Caffeine Allergy/Intolerance

I have had a serious problem with caffeine ever since I got the Gardasil vaccine. Whether or not the two are related, I have no clue, but I was an avid coffee drinker, soda drinker, what have you, before I got this vaccine. About two days after I received the vaccine I started to suffer something I cannot even accurately describe--my hands would tingle, I would feel like I was dying, I felt like I had the flu and I had a horrible fever. Beside the fact that I was having a bad reaction to the vaccine, I didn't realize that at the same time I was having a bad reaction to caffeine. All of the sudden, any time I had any coffee, soda or anything, I had a horrible panic attack and felt like, for lack of better words, like I was going crazy. I have suffered this since February of 2007. Just today I had HALF of a diet coke, no kidding, HALF, and the entire day couldn't even exist in my own skin. It is as if my body cannot metabolize it properly and it honestly makes my blood pressure go sky high---i'm talking like 150s or so without me even being anxious. What do I do??? What caused this?? Does anyone else have a similar experience??

From someone who is completely lost and feeling like they have no answers, there has to be someone else who has experienced what I have. And if not, then maybe I have no hope of anyone helping me explain what happened....I went to the dr. who administered the vaccine, who wouldn't help me, and countless others who dismissed my problems. But this is a last ditch effort to find someone else who either shares this problem or who can help me out.

Thanks.

[Dr_Aparna]

Hi,

Caffeine Allergy Symptoms




Caffeine allergy symptoms range from a minor rash to life threatening seizures. The severity of the reaction depends on what the person is actually allergic to and to what extent a person is allergic. Some of the reactions associated with caffeine allergies include difficulty breathing, shock, tongue, and facial swelling. These reactions are different than those associated with consuming too much caffeine which include jitters, headache, insomnia, and irritability. An uncommon component to caffeine that people experience adverse reactions to is tannins, but it does happen. Tannins are not only found in coffee and soda, but in chocolate and red wine as well. Adverse reactions to herbicides and pesticides used to grow coffee beans is a much more common culprit of adverse reactions. Keeping a diary of food consumed, physical and mental feelings each day, and physical activity will aid in discovering specific reasons for allergic reactions.
Caffeine allergy symptoms can be as subtle as tingling in the mouth, itchy skin, and minor swelling of the throat. People who have these reactions every day may not even notice them.
Many alternatives are available to replace caffeinated beverages and foods. Some people depend on drinking a warm beverage in the morning or throughout the day which can be replaced with chia tea, soy coffee, or Teeccino.
ref:http://www.christianet.com/asthma/caffeineallergysymptoms.htm

[Kelly_Fitz]

Right, I get all that, I know that, but my question is, how does that just happen out of the blue? And it seems to have been triggered by the vaccine I got. I had been having caffeine regularly for years before that.

And it's not as cut and dry as that either. It's as if my body can't properly metabolize the caffeine, and I wind up with ungodly high blood pressure after having as little as half a cup of coffee or half of a soda and I feel like I'm dying. It's even made it so bad that I felt like I was going to pass out. What causes this??

[utopiaem]

Kelly, I have the exact same problem.  Caffeine makes my heart race and gives me terrible panic attacks - and it came pretty much out of the blue.  I can't even take certain medications like Excedrin because of the caffeine content.

I don't have the symptoms the good doctor mentioned above, so I don't know if what I have can be classified as an allergy.  And I don't know what to tell you about why it happened so suddenly or what is causing it, but I figured you might take some comfort in knowing that you aren't alone.

[Kelly_Fitz]

I don't have those symptoms either! That's why I was so frustrated when that was the only response I got. I was thinking, there has to be someone else who has this problem!! I felt horrible for a long time because I didn't realize it was caffeine that was the problem. I think somehow it built up in my system and I overdosed on it--have you read anything about caffeine overdoses and how that happens?

I'm so glad you wrote back to me! I've been so frustrated for so long about this and I kept trying to see if I could have a coke--but last week was the last straw. I had HALF of a diet coke and I felt like I was going to die (not really, but you know what I mean) for the rest of the day. So I've decided it must be some kind of real allergy or intolerance.

Did anything seem to trigger your allergy? how long have you had it?

[utopiaem]

I can't remember doing anything different in my routine the week I suddenly was no longer able to drink caffeine.  One day I could drink it, and then a week later, after two panic attacks and feeling like my heart was going to explode, I figured out it was the caffeine.  It's been about four years now, and I know it's still there because around Christmas some idiot at Starbucks made me a fully caffeinated drink when I asked for decaf. I was on a subway train in New York when it hit, and I felt like I was about to explode out of my skin.

I have not read about caffeine overdoses, but I tended to only have one or two caffeinated drinks during an average day, so I doubt that was the cause of my issue.

The only thing I've found that makes sense online (I googled Caffeine intolerance - which was how I found you) was that people with anxiety disorders seem more susceptible to caffeine intolerance, something about it causing over-stimulation.   Anxiety disorders run in my family, and my mother, who has both an anxiety disorder and a heart condition, can also not drink caffeine. She just goes spastic if she does.

I haven't really tried to do very much research into the issue. Once I figured out what it was, I just avoided drinking caffeine.  I also stopped taking most cold and allergy medications because of the pseudoephedrine in them. Do you have a problem with those medications as well? They have a very similar affect on me.

[Kelly_Fitz]

I don't really have any problems w/ pseudoephedrine--I have in the past, but it's usually few and far between b/c I don't take it too much.

That's really interesting about caffeine not being tolerated well by people who have anxiety disorders--I don't have a "disorder" per se, but I have had problems with anxiety before and I still do sometimes. I just get too worked up about things, but it's so much better now that I don't have any caffeine. I'm 24 now--the first time I ever had an anxiety episode was in college when I was about 19 and I had started taking advair and singulair for the first time for my asthma/allergies. I'm still convinced that that's what has opened the floodgates for me, so to speak.

As far as anxiety disorders go, different things can trigger the onset of them if you have a genetic predisposition for it, and for me that's what it was and I've had a problem with it ever since.

Sorry--I kind of went off subject, but the anxiety was never unbearable/unmanageable and I had always had caffeine without any problems. I will always remember the day everything hit me and it was just hell--I was driving to visit my parents and all of the sudden I felt like I couldn't even be in my own skin, just like you described. From there it was just a downward spiral--I was just practically crazy for months until I figured out I couldn't have caffeine, which just killed me--coffee was such a huge part of my day!!

And I can't even have decaf--at least you can do that. I can't have any caffeine at all :(

Everyone kept acting like I was being ridiculous when I mentioned a possible caffeine allergy or intolerance--even doctors!! I just think it's upsetting when you can't even trust your doctor to hear you out and accept the possibility that you have developed an allergy to something.

[Fulci]

Kelly, I'm not having the same symptoms as you regarding caffeine and I didn't receive the Gardasil vaccine but my story is somewhat similar to yours. I've been consuming caffeine for years, diet sodas, coffee, energy drinks and even caffeine pills that they sell at Walmart from time to time.



About two years ago something slowly changed. At night, when I just got into bed, as I'm about to fall asleep I become in an indescribable state. I'm not sleeping but not entirely awake. Then my body is kind of numb and at the same time it's like if there's irritability and aggressively going on inside my body, as weird as this might sound.



In the beginning I only had to get up, watch t.v. for a few minutes to get really awake and after that I could go back to sleep. After a while it didn't work anymore. I had to get up completely and it's like I needed something to counter fight what was going on in my body. So I ate sugary stuff. Then of course I thought that maybe I had diabetes. Nope, since then I had 2 complete health check up and everything's fine. And I also have a glucometer at home and monitor it regularly just to see and I haven't have any problem with my blood sugar level.



After a while, the sugar was not enough neither.



So I cut back the caffeine, even to down to 2 diet soda at 8 in the morning and still if I go to bed at midnight, it will do it!!



BUT, here's the unbelievable part. Is that let say I get up at 7 am. I consume 70mg of caffeine (2 diet sodas or 1 and half cup coffee) then I'm ok and I can even take a nap in the afternoon with no problem whatsoever!! And then the day go on, without me drinking anymore caffeine. But comes the night, even if I go to bed at 1 in the morning, bam, it does it again!



That happens everyday, either that I take a nap or not. I have been up sometimes for 18 hours and having not consuming caffeine for 16 and the same problem occurs.



And finally, now, during the day, I have another symptom, my jaws get stiff, you know like if you were angry at something...



So like I said the symptoms are not the same but like you, I've been consuming caffeine my whole life and all of the sudden boom...



The only medicine I take is Effexor XR and I've been taking it long before this problem occur.



Like you said, I rally wish someone could explain to us what's going on because sometime I'm feeling like I'm going mental!



I've talked to about 4 doctors and 5 or 6 pharmacist and none were able to provide me with a concrete answer!

[Kelly_Fitz]

It doesn't sound weird. I can relate--even when I try to explain how I feel when I have caffeine, it's really really hard to put into words; so I usually end up sounding very strange and unbelievable. I've given up trying to explain it to doctors, because I know in my heart that I've developed an allergy to caffeine whether they want to recognize it or not. And there's nothing they can do for me other than tell me to stay away from it--so basically it all just comes down to doing what you know is best for you.

I was so mad about it for so long, but here lately I've just decided that the only thing I can do is either accept it and move on or not accept it and be miserable.

I hope you feel better--Have you ever looked up any side effects for Effexor?? I used to take SO MUCH medicine for my asthma and allergies for so long, and one day out of the blue developed a ton of weird symptoms--About a year later I stopped taking everything and all of my symptoms subsided. It's worth looking into.

Have you ever had any problems w/ anxiety/nervousness? I have issues w/ the stiff jaw thing also. It really got bad when I was pregnant, but it's gotten better since then. I say just try and cut out the caffeine completely for a few weeks and see if you don't feel better--and at the same time, see if effexor might be contributing to how you're feeling ;)

[Fulci]

Thank you for your advice.

I never had any "jaws" issues before, maybe one time or two in traffic lol but never had this problem...I was diagnosed with Disthymia in 2003 and been taking Effexor since so un less it slowly creeped in on me, I don't think that's what's causing my problem...

Of course the normal thing is to cut the caffeine completely. I did for a few days and it didn't seem to it at night (my problem) but I have to do it longer, like you said, for a few weeks to really see.

BUT, here's where I'm having so much difficulties. I never have been the most enthusiast and energize person so with caffeine in the morning, it give me a little boost to get me going. When I stop drinking it, I'm like a zombie lol That's why I'm having such a hard time stopping it.

So now, I'm in another vicious cycle, since I'm not stopping the caffeine, I recently started to take Zopiclone at night to help me fall asleep. But I hate pills, so I have to do something about this. The Effexor I've accepted it because I know that something wasn't right with me all my life and with it I'm doing much better. But this new problem, I don't need.

So what I will do is try to find if there are doctors that conducts food allergy test or something...Did you ever tried to find one to do this ?

[utopiaem]

Trust me, from one not-morning person to another: You learn to live without the caffeine.  

Since I found this community, I've been doing research and been contacted by people with similar issues.  It is frightening the things that caffeine does to a person's body. Frankly, I think we're better off without it.  

There are doctors that do allergy tests. If you have a primary care physician, they can probably recommend someone for you.  Caffeine is not standard for allergy tests, so I don't know what the doctor might do.  

Someone could make a good research paper out of studying the affects of caffeine on people suffering from an intolerance.

[utopiaem]

Trust me, from one not-morning person to another: You learn to live without the caffeine.  

Since I found this community, I've been doing research and been contacted by people with similar issues.  It is frightening the things that caffeine does to a person's body. Frankly, I think we're better off without it.  

There are doctors that do allergy tests. If you have a primary care physician, they can probably recommend someone for you.  Caffeine is not standard for allergy tests, so I don't know what the doctor might do.  

Someone could make a good research paper out of studying the affects of caffeine on people suffering from an intolerance.

[Kelly_Fitz]

Who else have you talked to that has our problem? I tried to talk to a few people but never got a response back. I feel like ever since I developed my intolerance, I feel worse all around even when I'm not having caffeine. My anxiety/panic attacks are way more intense than they ever used to be, and with that my blood pressure is also so much higher than it was and I'm only in my 20s. It's just so weird. Have you noticed that you're a little different in general as well?

And I totally agree that someone could make a good research paper about this. I would love to be tested for the allergy, but I have a little baby at home and not much time to go pursue that.

I think I'm just doomed to be miserable. My body reacts to antidepressants the same way it does to caffeine pretty much, so I can't even take those to even out my mood :( I'm taking them to feel less anxious, not more. I'm so frustrated right now.

[Fulci]

Hey guys, this problem is not gonna leave me soon I think...Maybe it would be nice if we could talk some more about it...Anyway, if you're intersted, I could leave you my "msn"...let me know what you think about it...

[utopiaem]

Kelly, I never really considered the caffeine intolerance as the catalyst for my increased anxiety. I always thought about it as being the opposite, but now that you've mentioned it, I have noticed that my anxiety is worse. As far as blood pressure goes, mine is actually slightly below average. But it certainly feels like my heart is going to explode out of my chest if I accidentally have caffeine.  

I've been contacted by people who have seen this forum but haven't spoken up. Not sure why, but I can dig up those messages, if you like.  It's basically more of the same strange symptoms.  

And Fulci, I agree we should chat more. It's nice to have others out there with my issues. I don't feel like such an oddity anymore.

I don't have MSN, but I do have AIM.

[Aloha_Tenshi]

Utopiaem, I have recently come to the same conclusion. I have an allergy to caffeine.

I have been drinking caffeine since I was 20 and suddenly at 28 it causes anxiety attacks. I had never had an anxiety attack before and was hospitalized for it. I had no idea what was going on. In hindsight I had drank an energy drink at work about an hour and a half before the symptoms onset.

I have had 5 attacks in total, all involved caffeine being take just prior to the onset. The last was Excedrin.

I became suspicious of caffeine after the second attack so I decided to experiment. I learned about anxiety attacks and knew that they wouldn't kill me, so I thought I would induce them, ride them out, and then take Valium if they got too severe.

That was my plan. They ALL got too severe. It happened like clockwork every time. I would first feel weakness in my arms and down to my hands. I would also find that somehow my breathing had changed and i would have hypoxia symptoms, feeling like there was no air to breathe because I had blown all the CO2 out of my system. causing me to be really short of breath.

I would move into the stage where I thought my heart was going to fail because it seems to be working too hard, and I get that feeling that this could lead to death. although  in my conscious mind I know thats unlikely, but just try to talk yourself out of that thought when you are experiencing a feeling that is telling you that you may die now.

I felt that I would pass out and my vision would deteriorate, muscular system  would be all wack,

and last be not least, the horrible feeling the I got in my chest that went up the back of my neck can be described as none other then anxiety! it is awful.


Many people might ask: "well if you were suspicious after the second time, why did  you test yourself 5 more times?"

The answer to that is I had to know, with scientific accuracy that caffeine was the cause of this termed disorder that I had never had before.

In there experiments there was one dependent variable and one independent variable.

drinking caffeine has six times caused sever panic disorder. a disorder that i did not have before caffeine. most likely it built  up over the years and now I am having a toxic reaction/allergy to it. I researched this and it is amazing connection

Stopping Caffeine intake for a month and no chocolate or other sweets that have caffeine. Get your life back. I was diagnosed with anxiety disorder, but now I don't use any medicine at all, just no caffeine. Just stay off the stuff and you will lose the panicattack response to caffine.

I hope I could contribute with my Experience. Gabriel

[Kelly_Fitz]

I felt the same way and still do every time I have it. I miss coffee so much. I was about to be 23 when my symptoms got bad--it was right after I'd had a diet pepsi, and the few months before I had been downing caffeine like it was water. I felt like I was going to die--I felt like I needed to go and breathe in a paper bag, even though I had never known what that had felt like before. And then it was just a downward spiral because I kept having caffeine, not knowing that's what was causing my problems.

I would get tingling in my hands and feel like my body just trying to shut down or something.

[jamie72]

Just a few words on the caffeine issues... Mine started with cranial bleeds. Cavernous Angioma. Apparently, raw caffeine on brain tissue aggravates the **** out if it! Long story short -I was having seizures -of course I didn't realize it because they were not convulsive. I bring this up because some of the symptoms I am seeing around here with the caffeine remind me of different types of seizures. Just some thoughts... So, if you are finding this debilitating in anyway -I would get things checked out.

Best,

[Kelly_Fitz]

after caffeine first started bugging me, i starting having horrendous headaches when i was trying to stop drinking coffee and everything. the doctor did a scan on my head and everything was fine--would that have caught any abnormalities?

how did you find out you had cavernous angioma? i've never heard of it. but i still don't feel quite right, even when i don't have caffeine. i just had a baby 3 months ago and all of the sudden, my body just feels so wrong. i'll get this strange feeling over my entire body and it won't go away for days. it's so hard to describe. but with that, my blood pressure has been high! and i'm only freakin 24. i keep going to the doctor and keep getting told that i'm fine, but i feel like there has to be some kind  of underlying condition...

[milcag]

I also have the same intolerance - I get anxious when I drink coffee, my mother too. It started 4 years ago, now I am 24... I used to drink coffe before that, but never more than 1 cup a day with friends, so It was easy to stop drinking it after I clearly noticed that it disturbs me. I don´t thing that is a big deal, coffee is not healthy at all. It´s a sort of help to get rid of the nasty habit :)

[imhereforgood]

Thankfully I stumbled upon this! I have been experiencing a lot of these symptoms ever since I was the beginning of the year; I would get horrible panic attacks, weakness in my limbs, my heart rate would shoot up, and I would grow restless (especially at night). The doctors have repeatedly told me that it was "the tip of an ice berg of a cold or flu". Now, I used to have a rather large cup of blended coffee on quite a consistent basis and for a short period of time, I had stopped the habit and noticed that I felt better, and now I'm consistently drinking it, I have noticed the symptoms slowly reoccuring. I have had countless urine tests, CT Scans, EKG Test, Blood tests, Chest X-rays, etc. this year alone!  So, I'm going to assume that caffeine is the root of my problems.......

[kimfar]

Recently, my daughter 16 was laying down relaxing after taking a Midol (caffeine), eating ice cream and drinking tea(caffeine). She suddenly developed numbness in her tongue followed by tingling in her hands, then shortly after it tingling began in her feet, difficult breathing and rapid heart beat. Within half an hour the tingling was in her whole extremities. It continued until the next morning. We went to her doc, bunch of tests, nothing, it was gone the following morning. A few days later after eating Taco Bell and drinking Dr. Pepper she told  me that the backs of her hands were tingling again and her heart was racing again. I called her doctor again, she thought it was probably a food allergy. She did more blood tests including food and respiratory allergies. Everything came back fine. The Doc told me to have her only eat natural non processed foods. For one week she only ate natural and drank water, juice, milk. Then, I started to research allergies with these symptoms and caffeine allergy/sensitivity came up. I decided to do a test. I let her drink a caffeinated soda but told her that it was decaffeinated (in case it was mental). What do you know within ten minutes she told me it was happening again! I have NO doubt she is allergic to caffeine! Now, she is caffeine free. Its been two weeks with no reaction.

P.S. She has been drinking caffeine; namely Dr. Pepper since she was five years old. Pepsi "used" to be a staple in my house. Not anymore! she was never allergic until suddenly this year. I don't know why, but its a fact!

[joeythepoey]

It actually scares me to read these psts - it sounds like my life.  Before my "strange experiences", I drank tea every day, coffee occasionally, and coke a little more than occasionally.  I never had even a hint of problem.  In fact, I used to brag because I could drink a big glass of anything caffeinated and still go right to sleep.  My husband couldn't have anything caffeinated past 4pm.  But then the anxiety attacks began.  My heart started racing, I had dizzy spells, my arm would pain, and my chest pained so much that I was certain I was having a heart attack (at 31!).  When I went to the doctor my blood pressure was even a bit below normal, but I felt like it was racing!  I was exhausted all the time and I felt like I had a lump in my throat - like you get from trying not to cry.  My doctor was confused - he sent me for thyroid testing and lots of other blood tests.  Someone in my family suggested I try eliminating caffeine.  I did and I haven't had one problem since.  Actually I have had a couple of episodes after, in weakness, I had a half-cup of coffee.  The strangest thing about this is ,like the others on this board, it came out of nowhere!!

[aug19]

I am glad to find this conversation. I too have been having something similar to this.
The "weird" feeling likr you are crawling out of your skin (cortisol), the racing heart beat, the sudden response to caffeine thou I have had caffeine daily for years! I too have thought I was going crazy.
The only thing I did find was that my adrenal glands were shot! Adrenal glands make hormones adrenaline, insulin, cortisol among others. I have found a holistic medical doctor that has tested me and has me on some stuff that I am finding very helpful but tonight I ate one of the kids halloween candy bars and my heart started racing terribly!
A GREAT book that shed some light on this is The Schwarzbein Principle 2 book. I wonder if there is a link between adrenaline overproduction by the adrenal glands and allergic reaction. Ironically I had some bloodwork come back that I had an allergic reaction going on. I wonder if it's an allergy to caffeine. In thebook I mentioned she says to stay away from ALL caffeine.

[aug19]

I am also researching possible gluten intolerance to explain these strange episodes!

[aml74]

Wow!  I can't believe I found this forum.  I am just trying to find some support so I don't feel lonely in dealing with my medical issues.
I have been wondering about Caffine.  I have drank coke/diet coke since I was 16.  It is my addiction.  More then once I have cut back and was able to stay that way for awhile.  As soon as I drink more of it again, I am hooked.  Caffine is what got me through having young children and working full time.  In recent years, it helped me stay awake before I finally got the Thyroid diagnosis which explained at the time why I was so tired.  
I continue to be tired in the morning, but I am able to pick up because I am on Adderall (adderrall) for ADD and seasonal depression.  It makes a huge difference in my ability to maintain energy to get through the day.
The diet coke I am drinking now is a comfort for me.  When I had surgery Wednesday, it was one of the first things I asked for after surgery.  Yesterday, I couldn't get enough of it.  I find it interesting that people are sharing that it causes hives.  Which I have had a lot of in the last year.  I came up with allergy to liquid adhesive that happended more then once and so my sensitivity to things is high.
How do you figure out foresure of having a caffine allergy?  How or what do I replace it with.  Diet coke seems to be the only positive thing to get me through the lastest reaction to the bandaging they did to me for my neck fusion and no one believed me.  They scared the heck out of me about the possible infection I could get with leaving my wound open.  I dont' understand why they couldn't stitch and were so stuck on using dermabond for closure which I said no to because of my reactions to liquid adhesive.
I appreciate the posts on the caffine.

[dinexdashed]

holy ****, I can't believe I found someone else who has had the same problem! I only received my first short of Gardasil & stopped after that because I thought it was the vaccine, but now I realize its a combination of that and caffeine. I can't have coffee anymore and I can barely drink a pop. I am going to see my doctor in a few weeks and I am definitely telling her about this.

[ramsy]

I have had the same symptoms!  I suddenly became 'allergic' to caffeine one day like I was going to jump out of my skin. I have had to avoid caffeine all together as I seemed to have developed some kind of intolerance.

[ramsy]

Maybe there is something in the Gardasil vaccine causes a change in your immune system so that when your system metablolizes caffeine, your body has a reaction the naturally occuring chemicals (adrenaline, cortisone, glucose, etc.) in your system. I would say this 'condition' may not be permanent, but  for now, stay away from caffeine if it is giving you adverse reactions until your system heals. I am angry at the medical community for keeping the Gardasil vaccine on the market - there seems to be so many bad reactions to it! My sister-in-law fainted in her doctor's office after she got the shot, then later that night had a car accident on the way home she felt so out of it. Seriously alarming.

[ChitChatNine]

I have to take synthroid and caffeine and/or other scripted meds can cause anxiety issues for me .. so I would say it may be something combined but I'm not a doctor.  Have you tried health topics above as well as CDC listed side effects?

C~

[k8tydid22]

I seem to have developed a similar intolerance to caffine-- it makes me nauseous and dizzy, tingly limbs, headache, and weakness.  When it happens to me at work, I just want to go home but am often in no state to drive so I have to wait it out and take a time out in the bathroom when I feel like I might faint or throw up.  Coffee, colas and sometimes cafifnated teas also bother my stomach and digestive tract-- does anyone else experience an digestive intolerance to high-caffine drinks?  Oddly, I've never had a major problem with chocolate.... but I refrain from anything with hydrogenated oils b/c that inevitbably bothers my stomach and digestive tract.  

[FurballsMom]

Avoiding everything that we know has caffeine in it is the best thing we can do for ourselves.  For some of us, like me, it is vital, since all those things have become such terrible allergens for me that I've become more than a little bit sensitive to those things.  Soda just simply makes my entire body feel sick, with or without caffeine in it.  Diet soda is worse.  Coffee, Chocolate and tea will just make me sick with headaches and vomiting.  I think that's enough to make someone totally avoid the things that have caffeine in them.  Even if there are other things in these items that make me sick, they are still all caffenated products that make me sick.  It's simply not worth even taking a taste of any of these things.

By tea, I mean the kind that is often referred to as "real" tea in America.  Herbal teas are in a different category.  Purists don't even call them tea at all.  Black, green and white teas all come from the same plant.  If you're allergic to one, you're allergic to the other.  If you are able to switch to green tea or white tea because of the lower caffeine content, do yourself a favor and read the information about green tea on mercola.com.

Soda pop is so bad for people in the first place, so we're better off just avoiding that garbage altogether anyway.  There is nothing healthy about any of it.  It's all bad.  Some of us have allergies to more than just the caffeine that is in colas, but did you know that colas are actually the worst of the worst in regards to soda pop?  Soda pop is worse for people than simply "empty calories".  There is the high fructose corn syrup, which is far worse for people than white sugar is.  That's not saying that white sugar is really all that good for people either.  Then there are all the chemical colorings and flavorings.  And, if it's diet soda, there are still more chemicals added to the mix.  Do we really want to be the manufacturers' lab rats and guinea pigs by continuing to drink this stuff, especially in light of what we already know that it does to destroy peoples' health?  It all makes me sick if I drink it, so the decision is easy for me to simply walk away from that poison.

And, since we're all either sensitive (hidden food allergy) or allergic to caffeine, I find it easier to just avoid the stuff instead of continuing to add to my daily suffering I have from the health problems I already have to deal with.

[aug19]

Research cafffeine intolerance with gluten allergy. There is a forum where people talk about the same stuff we are on here. It has to do with Celiac disease affecting the absorption in your lower intestines.

[oneeyedog]

Hey,
I had similar symptoms relating to both caffeine and small amounts of alcohol.  I'm a nurse, so naturally I looked up what might be the issue. It seems some people are more likely to become intolerant to both caffeine and alcohol due to differences in the way their liver metabolizes them. A liver enzyme responsible for the metabolizm of both does not work as effeciantly as it does in most people, which causes "us" to have difficulty metabolizing and causes heart palpitations, nausea, sweating, flushing, light-headedness, anxiety, and sometimes constant shaking. So, I'm thinking maybe the vaccine you recieved is metabolized through the liver and perhaps decreases this liver enzymes effectiveness?
Side note: A big percentage of Asian people are born with this liver enzyme problem, and they have high rates of alcohol intolerance. They call it the natural defense to alcoholism.

[soldy]

Hi,

What you guys are describing is sensitivity or allergy to extremely neurotoxic fungicide n

ow   registered worldwide for 84 plants  including coffee called AZOXYSTROBIN Small role plays also ACRYLAMIDE created during roasting process.If you add milion pounds sprayed on genetically modified plant you get results you are describing..Please check molecular structure if you can figure out what metabolite is a culprit.Have  a fun.

[quixoticle]

what you have described here is EXACTLY what i am going through right now. about two weeks ago i had stopped at a gas station to grab a cup of coffee, ended up having two (as i had some driving left), and after about 30 minutes i all of a sudden developed tunnel vision and lightheadedness and had to pull over to the side of the road and wait another 30 minutes before i was even able to focus on driving. once i got home i vomited a few times and did not sleep that night. now, i have drank caffeinated products all my life, and in recent months, and in times past, have been admittedly abusing caffeine products, drinking 3-4 big energy drinks a day, with a cup of coffee maybe in the morning and at night while studying. so, i was no lightweight caffeine consumer, and it took a lot for me to feel...well, i can't call it anxious, but more "in the zone". suddenly, all beginning that night, i too have severe and debilitating reactions to coffee, but they vary. i knew from that first night on that the culprit was caffeine, but i merely thought it was exacerbated maybe by some flu or sinus infection, which i am going to see the doctor about. the issues last all day, peaking about 2-4 hours after ingestion. the symptoms are those of a severe panic attack. but none the less i have kept drinking coffee in the morning every other day or so. i have suspected there was something really wrong with me. i am or have experienced most, if not all, of the symptoms you all have mentioned. and this is "all of a sudden" after that first night. i am so relieved to have found this site and read your comments. the key here to me that suggests that we are experiencing the same thing is that it happens so suddenly. this will be, and i might even print some of this off along with other resources, what i present to my doctor. what i am experiencing corresponds too greatly for it to be a coincidence. needless to say i am going to avoid caffeine for a while. also, did anyone experience any bloating or weight gain, especially those of you who kept ingesting caffeine not knowing it was the culprit, with also cold-like symptoms, such as slight-fever and shivering, and tenderness and distention of the abdomen (i thought for a day that i had somehow had a hernia)?

[hikanteki]

Hello,
I too just became intolerant to caffeine.  It happened along with diabetes.. :-\

I think mine is worse than yours.  When I first started having fainting attacks and lightheadedness (about a month ago) which ended up being diabetes, I immediately cut out all refined sugar, deep fried foods, caffeine, and alcohol.

Yesterday, I had literally HALF a cup of DECAF and my body started freaking out.  It was many of the symptoms you described -- I got lightheaded and felt like I was crawling out of my skin.  I had trouble breathing.  I was also insanely hungry.  I had a cup of orange juice which seemed to help... but then a half an hour later I started having the attacks again.  They lasted for at least six hours.

This morning I walked by the coffee machine at school and when I smelled coffee my body reacted as if I smelled something poisonous.

A few years ago I used to have 3 or 4 cups a day...but the past year I've cut back to maybe one every other day.  So I don't think I've overdone it either.

[vanslykea]

I have been noticing this for some time now, ever since I drank a couple of energy drinks one night at a concert after deciding not to drink alcohol. I thought that I had just overdossed on caffiene. I was up half the night from chest pains, trouble breathing, numbness in my arms; basically I felt like I was going to pass out. I thought I was having a heart attack and going to die. I also developed a rash on my stomach, chest, and back for the next week or so.

After having the flu and taking tylenol cold and flu, I began to experience these symptoms again. I had a full out panic attack for about an hour, and decided to make a doctor appointment. The doctor smiled at me the whole time like I was crazy while I was describing my symptoms, and simply prescribed anxiety pills. Now, I do not think that I am an anxious person. Sure, I can be at times, but I hardly believe that I need pills. I never get panic attacks otherwise.

After drinking a large coke at the movies tonight, I began to have the exact same symptoms as when I experienced the last two panic attacks. Trying to relax, and finally realizing that I couldn't sleep, I came onto this site and I am so glad that I did!

Realizing that I should probably cut out caffiene alltogether, even though I only have the occasional coffee or pop, the only question I have is if I have to cut out chocolate as well. I have the biggest sweet tooth and I would be crushed if I had to cut out chocolate  from my life. It never seems to bother me, but I am wondering if I will develop an intolerance to it as well. Or alcohol? I had a couple drinks after the movie, as well as a brownie, so I don't know if that is related to my reaction or not. I don't seem to have a reaction to these alone.

[chibidraco]

I'm really glad to find this thread so that I know I'm not alone because I thought I was going nuts.  The change in my system wasn't brought on by Gardasil, but by an allergic reaction to peanuts.  I'm deathly allergic, wound up in the emergency room, and got pumped full of epinephrine and benadryl.  
Two days later I started having full blown panic attacks.  My doctor said it was PTSD from the reaction, and while it was really scary I wasn't sure that was it.  About a month later I started getting a cold, so I took some Tylenol Sinus and I swear I thought I was dying....I was so light headed and it was almost like I could feel my body slowing down.  It's hard to explain.
Finally I started looking for things on my own - after NO help from my doc.  Over a two month process of daily panic attacks (I was completely miserable) I finally figured out it was caffeine.  After I stopped the caffeine it took me two more weeks to get it completely out of my system.  
I'm now caffeine free and having to stay that way.  I had a sip of my husband's coke the other day because I had a bit of lunch stuck in my throat and I was out of water, and two hours later I was having panic attacks.  I didn't think a sip would do it, but who knew.  I still can't take Tylenol Sinus either...the only thing I can take is Sudafed (the real kind that they keep behind the pharmacy counter, not the retooled junk).
I'm hoping this will go away one day but it sounds like that may not be the case.

[bassetfreak]

Any experience with caffiene and eye twitching?  I have had this eye twitching for several months, increased anxiety and heart palpitations.  It's looking like a caffeine issue?  How long does it take to get out of your body completely?  

[rickusaf]

hello everyone,
my name is rick and thank god that i stumbled onto this site.
it started about five years ago. at the time i was a cop ( now retired )
working long hours and different shifts. i was drinking a lot of cokes and
ice tea to stay alert because being a supervisor i was expected to respond to all serious calls.
one day during work, after consuming lots of cokes and tea, i was in my patrol car riding down the road when i felt like someone was sticking a cold ice pick in my left eye. i then started getting very light headed.
i pulled my car over and then started getting very short of breath ( as if there was no air to breathe ).  the next thing that i know i blacked out for a few seconds.  when i came to i started sweating profusely and the skin on my face was very very pale in color.  after this happened about three or four more times within a three hour period, i relieved myself of duty and went to the doctor.  of course they did a complete examination and then scheduled an appointment to see a neurologist and get a cat scan.  they thought that i may be having a mild stroke ( T.I.A. )
the results were negative and the doctor found me to be in excellent health.
after this i changed my dieting habbits and stayed away from all raw sugar products including cokes and tea. i then had no problems.
i am now on a flight crew with the u.s.a.f. and i started drinking lots of cokes daily again because i do love them so much.
two days ago, the same same symptoms returned so now i have to go get another cat scan and do everything all over again.
my question to everyone using this site is this.  could having caffine intolerance actually cause someone to faint and blackout like this ?
and what about the profuse sweating ?  what i do know is that right before i blackout, and right after i regain my senses, it terrifies me and i do feel like i am dying.
if anyone can give me any advice as far as these symptoms being caffine intolerant please let me know so that i can brief my flight surgon that this is what i suspect is causing my condition.
please email me at  " msg.rick.***@**** "  .  any responses or advice on this matter would be greatly appreciated.  thanks

[rickusaf]

the site would not let me leave my email address so if anyone can post comments on this site for me i can read them there.  thanks so much.

[gidget1973]

The ice pick comment is weird because I can relate to a similar symptom. Do your eyes hurt when you move them around your head? And headaches are sharp and on top of your head kind of behind eye? I think I have just pin pointed having a horrible reaction to caffeine. I have never been a coffee drinker, but two weeks ago discovered a new love of tea, chai etc. I began drinking like 6 cups a day, and double or triple bagging them. I have now experienced a vertigo sensation, depth perception issues, dizziness, sometimes a bluriness to my eyes, and my pupils are the opposite of dilated?? I have been really scared that something is seriously wrong with me. They come on as attacks not a consistent feeling. Have also experienced my heart speed racing for a few minutes at a time, to where I am borderline blacking out. It stops the second my heart starts beating normal, and then I feel as if I just ran a race. That symptom has been with me for years, but off and on, and I am suspecting soda pop during those years. As of today I am not drinking anything with caffeine in it, just to see what happens to me this week. I'll let you know

[rickusaf]

gidget,
what you described is exactly the symptoms that i was going through, plus add the blackouts and the profuse sweating once i regained consciouness.
i was reading more on the subject on some websites under the heading " allergic to caffine, or caffine allergies ".
the symptomtoms of being caffine intolerant can range from your heart racing to severe seizures.
i have to go in this week for another m.r.i.  before i can start flying again  i already know that they wont find anything wrong with me but once you black out it is a procedure that i have to go through to make sure that nothing is wrong, if you are on flight status.
i can see why most physicans would contribute these symptoms to migraines or a mild stroke ( T.I.A. ) , because the symptoms are just about identical in nature.
being very health conscious, after the first time this happened to me and nothing was found after the first M.R.I.  that i took and the doctors and neurologist could find nothing wrong with me, i started looking into this myself.  it did take me awhile to figure out ( because i might be a little slow )  that everytime i drank something with caffine in it ( cokes, coffee, chocolate ect. ) that the symptoms would re-appear.
there is no test that allergy clinics can give to check for caffine intolerence, but we all know our own bodies best and we can tell when something is affecting us.
we are constantly changing gidget. i know of one nurse and one doctor who were both in the medical field for about 20 years.  both developed an allergy to latex gloves after all those years of wearing them while at work. the nurses hands would break out all over and she would get short of breath and almost faint when she would try to wear latex gloves, and when the doctor tried to wear laytex, they would actually burn his hands and wrist and he also would get short of breath and almost faint.
so, we can become allergic to things that we once felt comfortable with at anytime during our life.
i will miss my cokes and expresso, and chocolate. i do love them so much but i know that since i have developed this severe allergy that consuming these items might make me not wake up next time i have a seizure.
let me know what happens with you and your case and thanks for responding gidget.

[Kelly_Fitz]

I am so happy to see everyone's responses on this issue. I could not be happier that I made the initial post and have had almost an outpouring of support and people with similar problems.

That being said, I hope everyone's doing okay and that you are at least somewhat enjoying your lives despite this near-debilitating problem. Rick, I am with you on the constantly changing bodies thing and the fact that it can come out of nowhere, because it did for me. That was the hardest part of all of it was that i had been "fine" for so many years and felt like I was being punished. I also had a few of those attacks where I nearly blacked out--I felt like I was dying and I was in and out of doctors trying to figure out what was wrong. It's been a really long road for me, first having the reaction to gardasil and then spiraling downward after that. It really unraveled my life for a while and I was extremely depressed and anxious all the time--I wasn't myself.

I laid off caffeine for over a year. I had my daughter and things seemed to be almost back to normal--she's almost a year old now and I couldn't be happier with my life. I'm sorry I haven't posted in such a long time, but kids and a full time job are pretty demanding :)

Don't get me wrong, life definitely still has its challenges. I still like to think that everything happens for a reason; even though it's hard to see that when you're in the middle of a crisis. I do have some words of hope for everyone--Along with the whole constantly changing bodies thing, I think you guys will be able to have caffeine again. I am somehow magically able to drink it again. I don't know if it's having my daughter, getting on an antidepressant or what, but a few months ago, I slowly started reintroducing it into my life and have been able to tolerate it again. So those of you who miss your cokes and coffee, it probably won't be forever. Just lay off of it for now, until you start to feel better at least and it's out of your system. And when you do start back, start back slowly. I think that having so much of it at once and all the time could be part of what contributed to some of us becoming intolerant. Who knows, just a thought.

[rickusaf]

the M.R.I.  was completed with negative results, so i am being put back on flight status.
sorry kelly, but because the fainting scared me so much, i am still never going to
intake any thing with caffine in it. i guess i will just have a caffine free life.
i also wish everyone luck and always remember,  caffine is not our friend.

[physguy]

I was so happy to find this post.  I am 27 and have been drinking coffee regularly since I was 17.  Last year, during a strenusous time in my life, I suddenly became intolerant to caffeine.  I was a college athlete, premedical student, and phd student during this time and never once had an anxiety problem.  Last year i suddenly could not tolerate caffeine at all.  I would get severely nauseated and developed very bad tremors.  The nausea got so bad that I was on heavy doses of phenergen for it and would feel like barfing while teaching classes.  

I am interested in writing some of this up - are people on this forum interested in being subejcts?  It would entail answering some basic health questions and the like.

Email me at:

***@****

if you re interested.

regards,

[physguy]

Sorry:

***@****

[physguy]

ok, so it wont do emails.

doctorgoodwin

is the name.  This is a gmail account.

That should work

[betty343]

wow, this forum is really interesting. I never realized that people may have the same symptoms as me. I'm a semi-recent college graduate. In college I was prescribed adderall (adderrall) (which I admittedly took a lot of because I had a really heavy courseload and I have been diagnosed with add since I was younger). I have bad allergies anyway that make me feel like someone is pushing on my sinuses and my eyes puff up. However, my senior year of college I noticed whenever I took adderrall my face got really puffy. Then, I noticed that whenever I drank coffee my face/eyes got really puffy. Then last year, I started having serious sleeping problems...right before bed my mind would start racing and I couldn't sleep. All this was followed by a panic attack (the er doctor said it was caused by a cappucino I had that afternoon). Anyway, all these symptoms are very strange. I have since realized it must be the caffeine I'm allergice to but its incredibly difficult to stop drinking caffeinated drinks because I'm a naturally sleepy person. What do you people do??

[k8tydid22]

I'd like to know too if there are any alternatives to caffine to stay awake or get a pick-me-up during the day..... I am so sleepy much of the time and would LOVE a power nap but can't take one at work.

[k8tydid22]

I am surprised you can take sudafed that contains psuedophedrine in it and not Tylenol because psuedophedrine can give many of the same symptoms as caffine-- heart palpitations, trouble sleeping, nausea, etc.  I have been taking it to help with allergies but I could not tolerate the 180mg quantities in AllegraD or Claritin D.  It made me crazy and I was up for days, not to mention feeling like ****.  So now just one 30 mg dose of psuedophedrine in the morning helps with the allergy symptoms and keeps me awake all day....but not at night.

[dotsky]

You mentioned that this issue starting during a strenuous time in your life and that resonated with me. I'm 42, drinking coffee since I was 16, lots of it with no issue. Two years ago I quit my job due to a new boss who was making my life pretty miserable. I got another job no problem but 5 weeks into the new job I had what appeared to be a heart attack. I was taken to the ER and run through all the tests which didn't show anything. The Drs. said I may have had a panic attack. For the last two years this has been ongoing. It is dramatically impacting my quality of life. Sometimes it's a couple times a week but more recently it's every day. It comes on fast, tingling in my hands, pains in my shoulders, skipped heartbeats and palpitations, then a overwhelming feeling of strangeness, of losing touch with reality. I have to get out of the room and try to stay calm. I couldn't have believed that coffee could have done this, but after reading these postings I'm willing to quit caffeine and see what happens.

Good luck to everyone!

[Kelly_Fitz]

At the same time that I got my vaccine and everything in my life started going downhill, I had also just graduated from college and was starting my first job and also had an incredibly mean boss. interesting.

[brotherjack]

My wife had a very similar reaction after getting a MMR vaccine she had to get as part of her U.S. immigration medical requirements, back in her early 30's (about 8 years ago now).  Many years, many nightmares, and many doctors later, it turns out the "caffeine allergy" is actually caused by a lesion in my wife's brain causing a condition known as temporal lobe epilepsy (TLE).  She has seizures (not the grand mal kind that most people are aware of, but smaller ones in the part of her brain where the emotions live that drive her crazy, literally).  Caffeine lowers a person's "sizure threshold" (for lack of a better word for it).   So, when she drinks caffiene - she has seizures, more seizures, and worse seizures than she does when not drinking caffiene.  When she has seizures, she has symptoms not unlike what you are describing.

I would recommend you see a competent neurologist for testing ASAP.

Side note - honestly, we don't have any way of knowing if my wife developed this lesion (and TLE) as a result of the vaccine, or just randomly at about that time in life, but she did start displaying symptoms within a few weeks of getting that vaccine.

[Kelly_Fitz]

i don't know if i have that problem. i don't have seizures--or at least i don't think i do ...what kind of treatment is there for the condition anyway?

[brotherjack]

My wife went for 8 years without being diagnosed, because "seizures" were the last thing in the world we thought she was having -- there was nothing about what was happening to her that either her, or I (or our doctors) equated with "seizure" activity.  it took a sharp psychologist to spot the symptoms, and a series of tests/scans run on her brain to confirm the diagnosis of temporal lobe epilepsy. In other words, you could very well be having seizures, and not have any idea that that's what they are.   Rather than listen to me ramble on, you can start here and do some reading (not that I think Wikipedia is all that great for accurate information, but it's a place to start):  

http://en.wikipedia.org/wiki/Focal_seizure
http://en.wikipedia.org/wiki/Simple_partial_seizure
http://en.wikipedia.org/wiki/Complex_partial_seizure

And yes, there is a whole vast array of treatments for seizure disorders.

[Kayrn]

I sympathize for all here suffering from adverse reactions to caffeine, especially those who had consumed it (via coffee tea coke etc) for years before symptoms occurred suddenly and for no apparent cause. However this reply is directed to the initial blogger and those having major health problems including caffeine intolerance after receiving the gardasil vaccine.

I deeply regret consenting to receiving Gardasil in 2007. I knew immediately afterwards in the office that I had made a mistake. But christ, a friggin HPV/cancer vaccine, who wouldn't want that? I know now I will never again sign up for something that sounds too good to be true, unless it's miraculously side-effect-free or it's been on the market 10+ years with positive feedback-even then I'd be skeptical.

I'm not going to give a laundry list of symptoms including my horrible intolerance to caffeine especially coffee, especially on an empty stomach, when just 2 yrs ago I practically lived off the stuff only occassionaly suffering from jitters or withdrawal H/A when not having any for a day or two. I am going to say I think the vaccine caused some major damage to either liver or adrenal glands or both.

As most Gardasil victims are reporting, I had almost fainted in the doctors office and within days I began having flu like symptoms that lasted what seemed like months. I had applied for life insurance at the time which of course requires many many blood tests for disease and disorders and the only abnormal were my ALT/AST liver enzymes which in a few months returned to normal. As for my adrenal glands which make hormones adrenaline, insulin, cortisol as chibidraco mentioned above, I have ongoing tenderness in the adrenal area (above the navel), blood sugar, blood pressure, heart rate, skin, diet etc issues which I had never experienced before this vaccine, but at least I am alive, unlike some given the vaccine.

I don't have the treatment or cure, but I think I'm on the right track making several lifestyle changes recently which have helped control the symptoms like: avoiding caffeine, alcohol, and aggressive exercise (which is like caffeine for me, inducing similar symptoms)
I try to eat only organic food, I'm taking a multivitamin and fish oil and using only natural hygeine products (shampoo, lotions etc) avoiding any ingredients that may be harmful to the body. A good source for this is www.cosmeticsdatabase.com

Unfortunately drug companies and even food companies are BUSINESSES! They are FOR PROFIT, they have put chemicals and preservatives in products to help the SHELF LIFE of their product, these additives have NO BENEFICIAL EFFECTS on the body, so why consume them? There is formaldehyde in vaccines for god's sake! And yes the FDA helps keep them from killing us in the immediate short term, but what is the long term effects of these vaccines, drugs and foods? I don't own a farm or have access to natural herbal plants for remedies, but I think it is far less risky to trust products who list all-organic, no chemical/antibiotic/paraben/sulfate/nitrate etc etc.

As for drugs, there are life saving ones obviously not found in nature and without people would die, these are either for emergency medicine (ie heparin for a fatal blood clot) or medicine replacing some natural biological deficit  (ie insulin for "type 1/genetic" diabetes) As for all these friggin commercial drugs like the purple pill that makes you happy but side effects include blah blah blah, these disorders are mostly preventable with lifestyle modifications and hey yeah if that doesn't work and you would rather have other symptoms than the ones you're experiencing (you're headaches gone, but now your impotent) then by all means it's your life to live, but did you really try to change your diet, exercise or reduce risks? Probably not, because it is HARD TO CHANGE and EASY TO TAKE PILLS. I am not completely against vaccines either. If your calling is to help people in indonesia who suffer from TB, which is airborne and fatal, then by all means get the vaccine. IT'S ALL ABOUT RISK VS BENEFIT.

I hope I have provided some insight to this topic even if it is just to make people skeptical enough to do their own research on the matter. I think it is going to get harder and harder especially in this economy to fight off easy dangerous options whether it be a $1 cheeseburger vs $5 salad or taking cholesterol/blood pressure/insulin medicine vs fighting obesity and heart disease with will power and change. And same goes for gardasil, I could have assumed I wouldn't get a virus that caused cancer because I was going to make an effort to reduce my risk by using protection and/or getting me and my partners tested, but no I was all about OMG an easier solution. We all might make mistakes, it's how we learn from them change that matters.

[Kelly_Fitz]

You are honestly the first person to have the same experience as me! I can't believe it. Over two years later and I finally found someone who was having the problems I did. I feel vastly better than I had felt right after the vaccine, but it has honestly been hell.

My blood pressure was affected as well--it was really high all the time; I still have days where caffeine makes me feel terrible, but for the most part if I lay off of it most of the time I can have it. How are you now? My life is definitely different now than it was then--I feel like I could have died!

[Emcd]

I am so happy I have found this thread of posts - I'm elated that my mystery intolerance to caffeine is shared by other people!!

I was always a little sensitive to caffeine, but after receiving the Gardasil shot, I became completely intolerant to it...and sadly still am!  :(

My symptoms are exactly how you describe it Kelly:  my extremities feel very weird, my heart races, my blood feels like it's going to burst out of my veins, and I feel like i'm going to lose to mind... like i just want to leap out of my own skin.  It's such a horrible sensation...and it lasts for up to 12 hours.  I also cannot mix alcohol and caffeine - really terrible reaction and I'm convinced I'll wind up in the ER if I ever accidentally drink caffeine while drinking (no more espresso martinis!).  I really really miss drinking coffee - I find that even decaf and chocolate are affecting me now. Very saddened by this - but atleast i'm not alone!

All my friends and family didn't believe me - and neither did my doctor.  So unbelievably frustrating.  However, now that I've found this page, I have proof that there's something going on between Gardasil and caffeine.

What can we do??  Our severe reactions need to be known, so we can warn other people. It should be in the gardasil commercials.

Thank you for starting this thread Kelly - thank you for being brave!  We all appreciate it!

(also great news that you can drink coffee once again - I am sooo waiting for that day!!)

[rickusaf]

everyone,
i had another episode after i had stopped consuming caffine for about one month.
my heart stopping was causing my fainting.  i am now grounded from flying and i have a pacemaker in my chesti was diagnosed with sick sinus syndrome.
if you have symptoms like i had, then you need to see the heart doc  A.S.A.P  and get it checked out.  caffine might not be the cause of your symptoms.

[zulu_T]

oneeyedog says:

>To: Kelly-Fitz
>Hey,
>I had similar symptoms relating to both caffeine and small amounts >of alcohol.  I'm a nurse, so naturally I looked up what might be the >issue. It seems some people are more likely to become intolerant >to both caffeine and alcohol due to differences in the way their liver >metabolizes them. A liver enzyme responsible for the metabolizm >of both does not work as effeciantly as it does in most people, >which causes "us" to have difficulty metabolizing and causes heart >palpitations, nausea, sweating, flushing, light-headedness, anxiety, >and sometimes constant shaking. So, I'm thinking maybe the >vaccine you recieved is metabolized through the liver and perhaps >decreases this liver enzymes effectiveness?
>Side note: A big percentage of Asian people are born with this liver >enzyme problem, and they have high rates of alcohol intolerance. >They call it the natural defense to alcoholism.

I too seem to have developed a caffeine allergy. Haven't been able to tolerate regular caffeinated coffee for a long time - oh, since I was 42, and I'm 46 now.

I can tolerate 2 or 3 cups of decaf a day and small amounts of chocolate every now and then.

Sad thing is, I miss regular coffee. I liked the lift that it would give me.

Your post linking liver enzyme issues and caffeine/alcohol intolerance was quite interesting.

I've seen some literature suggesting that caffeine intolerance may be due to declining DHEA (dihydroepiandrosterone) levels. This makes at least superficial sense as far as middle-aged individuals like me are concerned, since DHEA levels start to decline with the onset of middle age.

Besides having trouble tolerating significant amounts of caffeine, I also have trouble tolerating alcohol. Funny thing is that the problem with alcohol seems intermittent. One day I could tolerate a beer, no problem. The next time around, that one beer could throw me into a heavy anxiety attack, with no apparent explanation.

With a regular cup (not decaf!) of coffee the caffeine makes my whole body go haywire. The reaction first starts out as this weird, heavy rush that I feel in my head, like a super adrenaline rush. Then I'll feel like I can't breathe, my heart will really race and appear to be on the verge of stopping or exploding. Chest pain follows and then panic sets in, along with feelings of impending doom.

It's an extremely uncomfortable set of sensations. Indeed, before I really recognized what the problem was, I found there would be days where I could appear to tolerate regular caffeine, but find myself more prone to panic attacks or just find myself feeling constantly edgy and weirded out in a creepy sort of way.

On one occasion when some regular coffee was accidentally mixed in with my usual decaf I experienced the same symptoms. I went to work anyway, found my vision was getting foggy when I got there, couldn't concentrate or talk to anyone. Also experienced some significant chest pain too. So I tried to pass it off as an ordinary panic attack that would pass in about twenty minutes or so. An hour later I was still having the same symptoms, including chest pain, so I thought it was time to head over to an emergency room to get checked out.

I was promptly whisked in and put on an EKG. Apart from a very high pulse rate and a sky-high blood pressure reading, I was fine. Although they did see something on the EKG tracing suggestive of a previous heart attack. I wasn't too concerned about this since a cardiologist checked me out three years earlier and had seen the same thing, which he ruled a benign anomaly.

The only solution, really, is to severely limit the amount of caffeine in my diet. Whenever I go to a coffee shop and order decaf, I have to watch the wait staff like a hawk to make sure they're actually giving me decaf. I've had a couple of occasions where I got regular coffee by mistake because the servers were running off their feet and not paying attention.

[timijune]

Thank you sooo much for posting this.  I just figured out that I'm allergic to caffeine after being treated for acid reflux, concerns about my thyroid, as well as anxiety and panic attacks. I had no idea what was going on for a week, I thought I caught a really nasty flu or strep throat, because my throat was swelling up so bad that I could barely catch my breath. I had a lump in my throat all the time and started behaving oddly, I'm a student and I noticed that my notes were sometimes transposed and incorrectly spelled (not typical at all).  So finally after someone mentioned it and reading all of your comments, I think it's pretty safe for me to assume I've grown intolerant to caffeine. I stopped it altogether 2 days ago and haven't had the attacks since.

I wanted to thank you for the glimmer of hope you offered regarding reintroducing caffeine, I'm a morning coffee addict and this is really going to suck for a while.  It's good to know that you've had some luck drinking caffeine again, that was my question actually, has anyone else been able to come back to ingesting caffeine or does this seem to be a pretty permanent thing? I had no idea how unhealthy it was until now, and I know that I'm going to stop it all for now until I feel better, but I like my occasional chocolate and cup of joe, so I guess I just need to know if it ever gets better?

[Kelly_Fitz]

it does. it just depends on your body and how it heals and reacts to things. I noticed after I had my daughter that I was immediately different--and once I got on my antidepressant, I am like healed, somehow. I drink coffee/diet cokes like crazy now--not that it's good for me or that it always ends well, but I can tolerate it and it even occasionally does what it used to do and it'll wake me up.

Coffee has started upsetting my stomach though--I'll feel nauseous and have extreme heartburn that nothing helps. eh.

But the best advice that I can give you is stay away from it--as long as it's making you feel like that, you don't need it. And I used to get so hung up on wanting it to be what it used to be, but it won't. And it can't. Not until your body is ready. Drink a lot of water, eat healthily and try to do other things that can help you detox, as well. Exercise is an awesome way to sweat out toxins, feel better and get into shape at the same time. I run almost every day and that helps me calm my nerves and just feel centered.

I know how disheartening this whole experience can be, i've been through it over two years. I'm still dealing with a lot of the lingering emotional issues from it and how traumatic getting the vaccine was. I finally feel like I have my life back. If I had it to do over again, I never would've gotten the gardasil vaccine.

And to everyone else who just developed an intolerance, it could have happened the same way--your body could have reached its capacity for the time being. Feel free to message me any time!!

[gradstudent85]

I'm so glad I found this discussion group! I'm 23 and have never been a big caffeine consumer--2-3 cups of tea a week, maybe 1 or 2 sodas a month. However, I never had a problem with it until today. This morning I had a medium-sized coffee and 16 hours later I am still feeling nauseous, short of breath, slightly dizzy, and extremely jittery. After everything I've been reading online it seems that I am allergic to caffeine.

I have also been diagnosed with PMDD, and I read that caffeine can trigger PMS/PMDD symptoms in women with caffeine allergies. This definitely makes sense now--many of the symptoms I have had are similar to the ones I am having now. It never occurred to me they might be triggered by the Coke I was drinking to help with the fatigue.

How long do these caffeine reactions usually last? I'm going on 17 hours, and if anything I think I feel worse now than this morning.

[strawberry13]

So glad i am not the only one to suffer with this.  I was scouting the net this morning as i was having a particularly bad attack, and come across this site.  I am experiencing tremors, racing heart, insomnia or generally a panic attack. All because i drank three coffee's last night.  Silly I know when i had experienced this before recently.  As with many i have always drank tea and coffee, then about 3 weeks ago after a bad day, i drank tea late at night and had a severe attack.  Also at Xmas I had one when mixing caffeine with alcohol.  You really do feel like your going mad or going to die, surely your heart racing that much isn't normal arrh,  those thoughts just make it worse!!!  I agree with one of the other comments though, caffeine intolerance def seems connected to anxiety. Any how, glad i've found others who have same problem and i am not going mad!!!!

[skeenan947]

Hi,
I'm in the same boat as you -- I figured out a couple weeks ago that the cause of most of my issues (all the ones you mentioned) might be caffeine.  I didn't think of it as an allergy until I had an attack after drinking about 1/4c of my cappuccino this morning (yeah, I know I have a problem with caffeine, couldn't sleep last night because I had one this morning, and what do I go and do?  Have another one today.  Am I stupid or what :P), and decided to search caffeine allergies.  Turns out a nice little link on about.com explains many of the symptoms people are having:
http://mentalhealth.about.com/library/yourturn/uc091602.htm

oh, and by the way, I can't remember who said it, but a few people mentioned stressful times being linked to this -- I think that might be part of it; I'm dealing with the most stressful job I've ever had, which is saying a lot as I've been running multi-billion dollar web sites for a while now, and the pressure can be intense.  My guess is the reason these might be linked has to do with stress triggering adrenaline (epiphrenine) and coffee also triggering adrenaline, which intensifies the effect that just drinking coffee would normally give.

I've been drinking coffee since I was 12 and never had major problems.  I also used to stop drinking coffee for a week every month or 2 to make sure I didn't get addicted, but ever since work started getting extremely stressful, I upped my coffee intake a lot, and haven't stopped drinking it for about 6 months.
I've dealt with insomnia for years, but in the past 6 months, it's gotten really bad -- I'd be up til 3 or 4 almost every night.  at first, melatonin would help if I took 3-4x the recommended dosage, then my doctor gave me ambien, which worked for less than a week, then we tried ambien CR, which worked wonders...  for about 10 days.  I got fed up with prescriptions and started looking online, reading whatever I could find regarding my symptoms (biggest one being my heart feeling like it was going to beat its' way out of my chest), and found a bunch of articles about anxiety.  A few of the articles mentioned coffee, and also offered some herbal remedies and prescription drugs that might help with the anxiety.  The herbal stuff helped a little while; the doctor gave me a prescription, but I felt like God might be leading me to pay more attention to caffeine, so I started experimenting, and found that I would sleep a little better at night if I didn't have caffeine in the morning.
I'm a major coffee geek, so it's really difficult to overcome the hurdle of getting totally off of the stuff.  I own a really nice espresso machine and grinder, only use beans that have been roasted within the past 10 days, even do latte art; all you coffee geeks know what I'm talking about :P
Anyways, I decided to try Kona because it has half the caffeine, but it was still getting to me.  Trying decaf helped a little, but still the effects are almost the same.  Between what I read in the about.com article and what everyone has been talking about in this forum, I think I'm going to try cutting out caffeine for a while and see what happens.
Here's to sleep and no more anxiety attacks!
-Shaun

[Nora2353]

Well I am 23 yrs old, married, 2 kids, full time job, and my husband and I are youth pastors...so you can imagine my need for caffeine. I guess you can say I over did it though. I used to have 2 rock stars a day along with an occasional coffee (2-3 times a week).
But I stopped drinking everything with caffeine for a month, and right when I started back on the caffeine...it hit me!!!  Excruciating pain starting from the back of my head, down my neck, into my shoulders & arms, extreme dizziness, shortness of breath, tingling in my fingers, unable to focus, and like you all said...I thought my heart was going to pop out of my chest (like I was going to die).
I made an appointment with an allergy specialist, but until then I am assuming it is an allergic reaction to caffeine...HOWEVER, I had a Claritin in the middle of my Caramel Macchiato the other day and I was able to finish it in peace (with moderate effects).
My question is, can I just continue to have caffeine everyday as long as I have Claritin or Benadryl on hand or can that affect my health??? Because I really need my caffeine…I have been depresses over the fact that I cannot enjoy a coffee or a piece of chocolate anymore…I can’t live this way!!!

[zulu_T]

In your post you mentioned being able to take Claritin or Benadryl and then drinking a caffeinated beverage with few ill effects. This makes me wonder if the reaction some people get when they drink coffee is due to an allergy to caffeine itself, or to the pesticides coffee plants are sprayed with, or the dozen or so alkaloids and other chemicals that are naturally present in brewed coffee. Or perhaps a combination of all three items.

Claritin and Benadryl are antihistamines, as such they work to modify the body's response to environmental challenges which trigger large releases of histamines, which in turn triggers release of catecholamines including adrenaline. So it's no surprise they would attenuate the reaction to coffee somewhat.

[juleh65]

I too am a person who can't drink caffeine or eat chocolate etc. like many people who've contributed to this thread - have had many of the same reactions as decribed above and suspect I might have found out the reason why. About a year ago I was diagnosed with intestinal permeability, a condition where the gut lining is impaired and innappropriate or undigested molecules escape beyond the gut lining and into the bloodstream. This puts a strain on the liver which becomes taxed by the extra detoxification demands placed upon it. People with a 'leaky gut' are invariably low in glutathione, one of the chemicals responsible for liver detoxification (extremely simple explaination - see http://www.leakygut.co.uk/ and other sites for better explaination). They may therefore find it difficult to process caffeine as efficiently as the next person. On the other hand their bodies may have become sensitised to certain substances or their system is producing an autoimmune response to the substance (in this case, if their gut is leaky the autoimmune response may be causing inflammation peculiar to the individual - especially if their diet is too low in Omega-3s [Omega-3s are anti-inflammatory}).
Anyway there is a link between caffeine and intestinal permeability either as a cause of the condition or simply as a substance that aggravates the body if one has even a slightly impaired intestinal lining (lots of stuff on the net about caffeine as a irritant for LG sufferers).
If you look around on the net you will also notice a few references to a link between the Gardasil vaccine, the leaky gut and the autism spectrum disorder. Worth having a look at I think. In any case, some people who are having extreme reactions to commonly consumed foodstuffs could, in my opinion, get assistance from the leaky gut diagnoses and treatment.
Leaky gut is a serious business by the way. I currently work in a specialist ventilator assistance unit and one of my clients is now a quadraplegic due to having a leaky gut. His gut became leaky due to an extreme candida infection and his body's autoimmune system reacted strongly causing his myelin sheath irreversible damage (see http://en.wikipedia.org/wiki/Myelin_sheath).
Note: the above situation is extremely rare - most people do not react like my client. Leaky gut is treatable by the way.
Good luck to all and hope this helps someone!

[Leccinum]

Reading this forum has been quite eye opening for me.  I had to stop drinking coffee back in the early 90s - I had been having up to 5 cups a day and decided to stop drinking it for a while, and when I started again I began to feel very odd.  Basically, it was like I could feel the motion of every cell in my body!  I was still able to drink tea and other caffeinated beverages and chocolate until sometime last year.  I too was diagnosed with general anxiety disorder and put on antidepressants and am unable to tolerate pseudoephedrine (I hallucinate on it).  Last year I started experiencing more symptoms, and had always had a problem with psoriasis on my scalp, which just got worse over time.  I started to develop hives, first in my armpits, and later on various parts of my body.  I did some online research into both the antidepressant I was on and caffeine - I stopped the antidepressant and kept having the hives, so I cut out all caffeine sources as well.  It has been more than 6 months since I stopped and I no longer have any anxiety, the hives are gone and my psoriasis (which I had for more than 10 years) has cleared up.  I also cut out aspartame, which seems to have alleviated a joint pain.  Last month, I had a piece of chocolate cake at my niece’s birthday party and ended up with a hive on my eyelid!  I decided to test again, and ate a chocolate chip cookie and got another hive, on the lower lid this time!  I am going to try introducing very small amounts of chocolate into my diet, and monitor my reaction.  To all of you suffering with this, it is good to know you are not alone - I am so grateful to have stumbled across this site.

[Dcd51]

This is really interesting.. 2 1/2 yrs ago I started having very similar effects when consuming caffeinated drinks such as coffee or soda.. I was an avid coffee drinker for awhile, and out of the blue one day I started to feel really sick, anxious , and had what felt like a horrible panic attack ( just about everything Kelly described) .. just like Kelly, it was out of hte blue which I dont quite understand ..I've never had a Gardasil vaccine though..I've actually had to stay away from all sugars and caffeine ( even the smallest piece of candy will make me feel extra hyper, then all of a sudden tired with a numbing feeling in my body) caffeine is even worse ; like I mentioned before the panic attack-type feeling.. oh yeah and since that first day, I  haven't been feeling like myself too often although I've avoided sugars...Dr.'s don't know what the hell it is, they keep mentioning Anxiety possibly , I've even been put on Thyroid meds because they said I had a slightly low thyroid but that just made things more complicated..this has consumed my life pretty much and is really uncomfortable.. I just hope I can find anything about this.. and hope anyone else who is going through something similar finds a way around it too.

[Kelly_Fitz]

Hey, I'm sorry to hear that you're going through that right now. It *****. I found that when I was having all of my issues w/ caffeine that I felt awful even when I WASN'T consuming anything w/ caffeine. I was a mess and my life was totally consumed by my problems, just like you said. I don't even have any advice for it because it s u c k s and there's really nothing you can do to get around it or feel better.

The worst part is the doctors. They don't care, they don't want to try and figure out what's going on and it just makes you feel even more hopeless.

Just know that you're not alone and I hope you figure out something that works for you. Feel free to msg me if you have any Qs or want to vent ;) That goes for anyone on this forum as well! Have a good weekend everyone :)

[jundi78]

Dears.. Boy oh boy am I glad to find this site...

Just like most of you, it all started with me about 4 weeks ago during a very stressful business trip. I ran to the ER ofcourse and had all sorts of tests which came out entirely negative.

Then, a few days later, I had another episode and again to the ER. Only it was a "better" hospital and a "better" doctor who was a cardiologist.

Since then, I've been living in hell... sometimes I feel like I am dying, sometimes I feel like I am going crazy... all in all, the pain was real and it was crippling. I got so scared that I became religious.

But guys, please think about this for a bit:

1- For us, it all started suddenly with a panic/anxiety attack,
2- During a stressful time,
3- We get frustrated with our doctors who do not or are "unwilling"  to "understand" us.
4- We constantly check the internet for the source of our condition.

These are the major signs of hypochondriacs and people with General Anxiety Disorder.  

You can see for example that some of you have suddenly started to be tolerant again for caffeine.. but only when they started taking anti-depressants.

Again, I am not saying that what you feel is NOT real. Or is that its all in your heads. I CAN FEEL THEM.

But my advise for you is to give your self a complete check-up just in case, and if the tests are negative then please go and see a psychiatrist. THEY CAN HELP. Just give it a shot.

Ever since I came to the conclusion that I might be hypochondriac my life became a bit easier. I'll wait and see if I get better, otherwise, I will go and see a psychiatrist.

[pjo888]

I have the same caffeine problem.  I've read that caffeine involves acetylation by the liver.  The rate one can process it is somewhat genetic.  A vaccine or anything else with the potential to depress liver function could make it worse or trigger this intolerance.  I believe that heavy metal toxicity especially mercury toxicity can cause the liver enzyme problems leading to gluten, lactose, caffeine and/or drug intolerances.  Tylenol will depress liver function, so that could also make any of these worse; better to take ibuprofen.

If you have dental amalgams, the book "Amalgam Illness" by Andrew Cutler is a really good one to read.  My alt doctor said if one has mercury toxicity, vaccines can all be quite dangerous because they often contain either aluminum which enhances mercury toxicity, or Thimerosal which is 50% mercury.  Both of them are neurotoxins.  

[zulu_T]

The reason why people seem to be able to consume caffeine while taking anti-depressants is that they suppress a whole range of biological functions, especially metabolism. This is particularly true of the older tricyclics, which are well known for their anticholinergic effects. SSRI's possess the same property, but to a much lesser
extent.

Put into plain English, anti-depressants suppress the body's natural responses to stimulants and alter the way we perceive their effects.

Funny thing is that I was on a course of low-dose benzodiazepines for a while and found they did absolutely squat to allow me to drink regular coffee without substantial discomfort.

[Dr_Subir]

You definitely have developed allergy to coffee. U should try avoiding coffee. And this is no way related to your vaccination with Gardasil. Infact you should be thankful to your doctor to have gone ahead and have protected you against cervical cancer by vaccinating you with GARDASIL, which is the only US-FDA approved vaccine against cervical cancer.

[Kelly_Fitz]

You are full of it. Please stop trying to advertise for the vaccine and shove your opinion on everyone, because I'm not buying it and I don't care. I know what happened to me and deep down you know that vaccines can cause damage and that they can have adverse effects.

You are a M O R O N if you aren't even OPEN to the fact that a vaccine could possibly have a new or adverse effect on someone. Haven't you read the other posts where women got the vaccine and developed a sudden, strange problem with caffeine?

You're probably one of the doctors who tried to throw xanax in my direction when I came in with sky rocketing blood pressure and felt like I was on my deathbed.

And jundi78, I am not a hypochondriac. Read the post below you for an explanation about the antidepressant thing--I am lucky that I've been able to have a few sodas here and there, but recently my luck has run out and it's all been giving me problems again. It's fine if you're a hypochondriac and that explanation works for you, but that's not what's going on with most of the people on this forum.

thanks to all who are supportive.

Kelly

[jundi78]

Well.. i HAVE stopped drinking caffeine since i posted my comment (almost a week ago). and the whole experience seems to be something like a bad dream... i guess it was caffeine after all....

piece....

[damiens_mom]

I have had anxiety / panic attacks in the past and I also have an intolerance to caffeine. I'm realizing after reading all of this that my anxiety and panic went away around the time I found out I had an intolerance to caffeine and I stopped having caffeine.
When I have caffeine I get bad heart palpitations. It's been about 4 years now since I realized I couldn't have caffeine. I've never mentioned this to my doctor I just stopped having caffeine. Except for chocolate (my weakness!) I still have that occassionally and when I have it in excess I notice the heart palpitations. I don't have any other symptoms that I know of but the palpitations alone are enough to make me feel like I'm dying.

[brownthing]

Wow. I am SO grateful I found this board early and haven't had to live with this for a very long time.  Like so many others, my caffeine allergy came out of nowhere. For the last 2 months ANY sort of caffeine, from food or beverage, has induced a panic attack. Heart racing, feeling like there's a lump in my throat, shortness of breath, feeling like I can't breathe, dizzyness, blurred vision, inability to concentrate, and even memory loss. I've even had trouble spelling and difficulty with reading comprehension!  That is MOST unlike me as I am an avid reader and spelling bee winner!!

The panic attacks are TERRIFYING if you've never had one.  I have NEVER had panic attacks before but have had at least 15 in the last 2 months.  Only this morning did I finally have enough. I had a cup of coffee at work and my throat began to swell shut. My heart began to race and I couldn't breathe. After convincing myself I had access to air and wasn't going to die, I finally did a google search: "coffee makes my throat swell shut" lol.  Lo and behold it brought me here. THANK GOODNESS because I thought I was going crazy.

I've also been fighting BOTH insomnia and sleeping too much. I could have 4 hours of sleep or 14 hours of sleep and still feel exhausted. Another thing to note is that anxiety and depression run in my family.  I also have mild OCD (which recently got MUCH worse.)  I've read on several sites how caffeine seems to exacerbate these conditions and I must agree.  I was just complaining to my friend how I felt like recently I was getting worse in terms of my OCD and anxiety. I even remember remarking "It's getting worse because now I'm having panic attacks!"  Who knew it was the caffeine!!  Shame on doctors for not paying more attention to people who complain about this or to at least acknowledge this growing trend. By the way, I did NOT have the Gardasil vaccine. Although, after reading this entire thread, there really does seem to be a correlation.  

Recalling what another person said, what can doctors do anyway?  All they can do is tell you to stay away from it. I have had CT scans, MRI's, echocardiograms, ear and balance tests, worn a heart monitor for 24 hours, blood tests out the wazoo and all came back normal. In fact, with the heart monitor they make you press a button when your heart starts to race so it can mark it on the printout to look for trends. When I pressed the button it showed that my blood pressure was actually LOW at the time of the attacks!  I was interested to read that in several other posts this was also the case.  SO bizarre!

At any rate, I'm cutting back caffeine entirely. It's just not worth the hassle no matter how much I love the stuff. Also, a hearty thanks to the original poster. Doctors don't always have the answers and it's through all of you guys being so willing to share your experiences openly that has provided relief for so many. I know I am thankful for the relief provided because I KNEW that it wasn't just all in my head.

Best,
Jen

[Tango7]

I am suffering too but in different ways.
I first got this problem about 8 months ago when I was in a department store and suddenly, without warning, thought I was going to be very sick.
There was nowhere for me to go and so I was panicing I was going to hurl in the middle of the store.
I managed to get to a toilet and stand in a cubicle, sweating, shaking and feeling very, very sick.
This happened more and more often until I could barely leave the house.
In my house, I was fine but outside, when walking, it was terrible.
I thought I was agoraphobic or even claustraphobic as it was worse in closed spaces.
However, after a stomach exam where they shoved a tube down my throat which revealed nothing, I realised it might be coffee.
I went on Nexium for a while and things got better but it clicked that coffee might be the issue.
I hated the idea of this as I'm in IT and spend hours doing coding or building websites and coffee gives me the kick I need to get stuck in. Without it, I'm lethargic and get little done.
Anyway, I stopped drinkiing coffee, tea etc and dealt with the come down, but I also felt much, much better.
In fact, I feel great until I have a tea or coffee. Once I have one, I feel very bloated, sick and a little confused. Needless it is to say, but I have stopped.
Now, here's the clincher. I can drink Red Bull or other stimulant drinks. Caffeine isn't the issue. The issue is the other substances in the tea or coffee.
I drink red wine but it keeps me awake and I eat chocolate but it gives me heart burn and so it's got to be the tanin ( excuse my spelling ).
When drinking coffee, I got so ill I really thought I must be suffering from cancer or something else that was going to kill me very quickly.
I love coffee, but I just can't drink it....

[BDM2008]

wow i read all of this and i think its whats happening to me.

i got the gardisil vaccine but i didnt think it could be that..

but everytime i would drink an amp or monster i feel weak and usually would get throw up a few times.

i have never drank coffee or tea. i only drink water everyday. no soda.

but last year i drank an amp for a 8 hour driving class but i felt so weak and sick thru the whole thing, so i stopped drinking those.

i had a monster in the middle of the night and threw up several times the next morning.

and just today i started taking the green tea fat burner because i want to lose some weight but i looked and saw that it has caffeine in it.

then i started thinking about it and realized it might be the caffeine.

is there anyway to be able to drink caffeine again with out feeling weak and sick?

Thank you
~B

[Peterbndrs]

who should i contact for caffeine intolerance problem? is there a particular doctor or clinic?

[allyzulu]

so happy to see this, and kelly, your symptoms sound a lot like mine. i've just had a rough 4 days of feeling like i had, or was getting, a flu. mild fever, exhaustion, dizziness, tingly limbs. things that if i went to a doc, he'd surely suggest panic attack cause that's what they like to say when they can't find a cause. but i think i may have traced it to coffee. and shingles. i had shingles earlier this year, on my head right above my temple. and while i was recovering, i kept a journal so i could figure out  what i was doing/eating that made me suddenly feel like **** for anything from 2 to 8 hours. of course i'd wake up, feel ok, get a cup a joe, and then 2 or 3 hours later, feel like hell.  being that i had shingles, i was aware that my nervous system was under stress, and caffeine seemed to attack my nerves directly. same with chocolate, and nuts.

that was 6 months ago, and i recently decided that a cup of coffee here and there wouldn't hurt. i think i was mistaken.

i was able to find some minor general references to this, but shingles is not really well understood, and possibly even less so when it affects your head. i wish there was some more research about this, heck i'd even volunteer myself to undergo testing. so i'm here to put "shingles and caffeine" in one place, so someone else might find it when researching. cause i can't imagine just living with this, when all you gotta do is stay away from caffeine. (only my favorite drink in the world).

[kucud]

Hi,
I am in a similar boat to all of you. When I was about 16 I was getting headaches and stomach problems and so a naturopath told me to go off a whole heap of foods and drinks, such as coffee, coke, orange juice, anything citrus, chocolate etc. It helped alot, the headaches went away and the stomach problems stopped. After this I was allowed to have these again but the only ones I didn't go back on were coffee and coke (I used to drink alot of coke, not really any coffee though). Since then I thought that I couldn't have caffeine because anytime I had coke after that (which was not very often) I would get nausea.
Further to this when I was 21 doing undergrad chemistry we were doing a prac on extracting and finding the amount of caffeine present in instant coffee and in just completing the prac I felt really nauseas and lightheaded.

So because of this I had not had any caffeine in a while. However, recently I have started to have tea every now and then. For a while I thought I was right, just having the odd cup of tea here or there but then I started have tea everyday. Since then I have been having similar symptoms as those described above. It would be worst at night, but I would sometimes get it during the day, but i would get heart palpitations, weakness in my left arm, headaches, lightheadedness, dizziness when standing, nausea and not feeling right in my body (it's difficult to explain). I have gone through many different options with the doctor and the gastroenterologist but still nothing.

Over the last 2 weeks I have had a forced break from tea, because I had my wisdom teeth out and could not drink hot drinks. During this time I have felt fine (except for a mild reaction to a painkiller) until I had a cup of tea last night and it all started over again. It wasn't until then that I thought of caffeine again, which has brought me here today.

I am happy that I now have a reason that I can work with, it will be relatively easy for me to avoid caffeine as I don't have it that much.  
Cheers

[martin10019]

I use to ephedra with coffee and didn't feel a thing and than one day I stopped to drink coffee and take ephedra for about one year. After that coffee free year I went to starbucks and ordered a none fat latte after
that coffee i thought i had to go to the hospital I thought someone put some drug or poisen in it. On the bus on my way home i called me friend and told him i think i am going to explode. This all started at the age of 32 now i am 38. I had panic attack every time I had anything with coffee I was a nervous wreck. Everyone I told about this thought I have gone mad or its all in my head until my best friend started with the same symtoms (symptoms) after drinking coffee as me. After that I did some research into coffee as well as some experiments on myself to get to the bottom of this problem. I started by getting blood work at my doctor I had my heart checked I even had a full body scan. The doctor told me that I had to high colesterol and my blood pressure was 145/90 to high for someone my age. After a few months of research i came to the conclusion that the main problem was my stomach walls. I started to cook for myself and changed my diet. I am still eating a lot of food by I am staying away from the processed food and I lost 20 pounds of fat. My bloodpressure went down but I have to say I also go to the gym and workout really hard. Regarding the coffee I do have a cup of coffee every day with food because my stomach is sensitive. In the beginning when i started to change my diet I had stomach pain here and there but I used one teaspon of baking soda with a glass of water and the pain went away in minutes. if you have a question my email is ***@****.

[Sarah036]

Hi all

I realised I had a caffeine intolerance about a year ago and I believe mine was cos I overdone it on the coffee- I started lighter life in May 2008 and part of the diet is to drink approx 4Lt of water a day - at least 2 of mine were black coffee- not your strong stuff just normal Nescafe anyway when the diet came to an end I started to get palpatations and head rushes and that horrible numb feeling in my legs.  After a particularly bad day of palpatations I went to the doctors and they gave me an ECG and checked my blood pressure - Which was very low but all i could say was my heart was racing. The doctor suggested i cut out caffeine and keep a food diary and told me to come back in two weeks.  Anyway about 10 days later without thinking i had a coffee from the machine at college and within 10 mins of finishing it I thought i was gonna have a heart attack - so problem solved don't drink coffee so all i did was switch to de-caf.  This was all well and good till I had an operation this July and had a bad reaction to the anestetic after about the 3rd day of tingly & numb legs, heart racing, head rushing and constant feeling of being drunk -i was trying to rack my brains as to what I had had that had caffeine in it- I mean normally it's just the coffee that affects me and nothing else- then it dawned on me it must be the tablets they were giving me- i let the doctors know and they said none of them had caffeine in but codeine can sometimes have this affect- anyway since then i cannot even take a paracetamol as it gives me the same affect - my doctor said i would be able to take the tablets agin in time but only last weekend i took two paracetamol and after about 1/2 hr my husband said I'd gone green and i got that numbness and head rush feeling and consequently spent the afternoon in bed in a awful state.

So my problem is now that i don't know what contains caffeine or if there is another name for it on food labels- all i've managed to find out is the obvious ones like most fizzy drinks, WKD's, coffee and energy drinks and i can't do this trial and error thing anymore as i just seem to constantly feel ****!

Oh and by the way i am reading through all the posts and finding them very interesting but have not read them all yet as I only found you tonight but i would like to point out that I do not take anti depressants, I do not take any regular tablets and the vaccine that i think you are talking about is just coming in in the UK for teenage girls and so I def have not had this and I was not going through a stressful time when it started in fact I was feeling great and the reason i am up so late is cos i got into reading this web site!

Anyway hope someone can give me some clues on the secret names of caffeine

Thanks

Sarah

[LeighvdB]

Hi guys

Came across your posts. I have the pretty much the same thing you do - developed a caffiene allergy out of the blue after dringking coffee, coke for years. Now, I can't touch a drop of coke or pupils dilate massively and I won't sleep for days. In fact, I'm now on two different meds to knock me out at night. (Serious big guns...) Anyway, it occured to me the other day - coffee is metabolised in the liver. And I think my liver now has a problem with metabolosising coffee - or is just doing so realllllly, realllly slowly. And then it hit me - my caffeine allergy started up a year into my taking Topamax, a drugs that's really hard on your liver. (You're supposed to get liver function tests done each year with it). And, as it turns out, Advair and Effexor are also infamous in regards to giving your liver a real bashing. Just something to think about... I for one am going to look into a test that checks just how long it takes for my liver to metabolise coffee - and see if it's normal or not. I want a doctor to SEE that mine isn't excreting it properly and possibly do something do change that. Sigh...

Good luck!!!

[LeighvdB]

Hi guys

Came across your posts. I have the pretty much the same thing you do - developed a caffiene allergy out of the blue after dringking coffee, coke for years. Now, I can't touch a drop of coke or pupils dilate massively and I won't sleep for days. In fact, I'm now on two different meds to knock me out at night. (Serious big guns...) Anyway, it occured to me the other day - coffee is metabolised in the liver. And I think my liver now has a problem with metabolosising coffee - or is just doing so realllllly, realllly slowly. And then it hit me - my caffeine allergy started up a year into my taking Topamax, a drugs that's really hard on your liver. (You're supposed to get liver function tests done each year with it). And, as it turns out, Advair and Effexor are also infamous in regards to giving your liver a real bashing. Just something to think about... I for one am going to look into a test that checks just how long it takes for my liver to metabolise coffee - and see if it's normal or not. I want a doctor to SEE that mine isn't excreting it properly and possibly do something do change that. Sigh...

Good luck!!!

[Turgrodan]

I have reactions to caffeine too but mine are different than everyone elses.  So far I have not met anyone else that has the same type of reaction that I do.  Although its good to see that other people have problems with caffeine too so that I don't feel alone in my problem, it would be nice to find someone else that reacts the same way that I do.  Surely I can't be the only person in the world that reacts this way.  I discovered that I had problems with caffeine in 2001 when I was about 26.  Of course, every doctor that I've ever talked to dismisses it and basically says, "If you think it bothers you then stop drinking it.".  I can't have caffeine in any form without it causing problems.  i.e. coffee, tea, vivrin, chocolate, exedrin, decaffeinated coffee (has 4mg of caffeine).   My primary symptom is muscle pains.  Strangely enough, the muscle pains do not always occur in the same places.  After consuming caffeine, I will usually start to experience muscle pains within about 15 minutes but sometimes it won't start till the next day and it can last for several days.  Here are the places that I tend to have muscle pains: neck, lower back, bottoms of feet, knees, elbows, fingers around joints, the outsides of my hands, my palms on rare occasions, TMJ, wrists, bladder muscles which can cause difficulty urinating (stop/start), upper back, and shoulders.  Usually only 1 or 2 of these places will hurt at a time unless I've consumed caffeine several days in a row in which will cause more parts of my body to hurt and the pain will be greater in those spots and it will linger longer. For the last 9 years, I very rarely if ever consume anything with caffeine in it.  Sometimes its a real sacrifice because I get REALLY tired feeling at work some days where I just can't function and really need a pick-me-up.  I have bad allergies so I have to take antihistamines alot and the nondrowsy ones DO NOT work on me.  I know I still have a caffeine problem because I still occassionally allow myself to have something caffeinated if I'm willing to hurt for a few days afterward.  Another symptom I used to get is a feeling of being stabbed with needles randomly over my body every minute or so (even on my eye balls).  Although nowadays its just a small stinging feeling and some itching.  Another common symptom is that one of the glands on my neck close to my thyroid hurts.  I believe my caffeine intolerance\allergy was caused by several years of ingesting too much caffeine.  I used to drink about 8 or so cups of coffee a day.  Sometimes at work, we would make the coffee twice as strong as normal too.  For me the problem was somewhat of a progression over several years but I didn't know what was causing it.  Some of the first symptoms I started experiencing was knee pain and upper back and neck pain. For a couple years I thought I had pateller tendonitis from running and that I had injured upper back weight lifting but the problems would never get any better.  I think the problems really accelerated when I started using Vivrin to quickly wake up in the morning; that's when the gland in my neck started hurting and the TMJ started.  I went to many doctors for these various aches and pains until I figured out the problem myself.  The needle stabbing pain only started after I figured it out and was still trying to achieve the self-control of never having anything caffeinated.  It took me a good year or so before I had enough self-control to go long periods of time without any caffeine; breaking the caffine addiction was hard for me.   There have been periods now where I have gone a year or more without anything caffeinated.   If I had been having the bad panic attacks that you all are describing it probably would have been alot easier to stop drinking caffeine.

[Andib79]

So glad I found this board!  If I drink alcohol then try to drink ANY caffeine the next day I will be sent into a severe panic attack almost instantly.  The post that said that caffeine metabolized in your liver makes complete sense to me.  I can still drink SOME caffeine in moderation.  Say if I have a little soda..and drink it slowly.  Or my favorite Thai Iced Tea..which sent me into a panic attack while I was driving last night.  Very scary situation for me..and I should have pulled over.  But I had drank alcohol the night before.  And I had figured out the connection to my having drank then consumed caffeine, but didn't understand why all of a sudden I had NO tolerance.  Its nice to know that I have control of what sets the anxiety off.  I can live without caffeine.

[kate1122]

I am so glad I found this board- I have been going through the same thing as all of yall.  However, its a little different.  I have never consumed much caffeine- I have never even drinken sodas on a regular basis.  Back in high school, I used to drink coffee occasionally but I would be fine.  In the few years since then, I have developed intestinal problems that have made me unable to drink coffee, and I still rarely drink sodas.  But after taking a Midol this weekend, my body went into a weird state- I felt tingly and felt like I had a fever, my throat got really sore, and I had a mild panic attack.  I took the Midol at 2pm, and I absolutely couldn't sleep that night.  That was when I realized it was the caffeine in the Midol.  I think this has happened to me before but I never realized what the cause was.  So I am having the same symptoms as everyone else, it seems like its just an extreme reaction to caffeine, but the difference is that it seems like this happened to most of yall after you had been drinking caffeine for years- almost like your body overdosed on it.  I have only occasionally consumed caffeine and never been a regular coffee drinker... is anyone else similar?

[bluestlight]

    Its very funny I came across this posting because for the past 5 months, I really thought something was wrong with me. I am only 23 and drank tea and coffee everyday with no problem for years. I am prescribed a mild pain killer after a car accident and drank these things while on this also with no problem for a year. Then, all of a sudden--really out of nowhere, when I went out or was drving in my car or even in my house(although I felt most comfortable there) I would get a "FUZZY, DISORIENTED, CONFUSED" feeling. I thought maybe it was my meds allof a sudden? Even when I cut back I got the feeling tho. I got to thepoint where I was leaving work early to wait for ths feeling to pass. My heart would also feel as it was beating hard and fast.
    I really narrowed it down to after i drank anything with caffeine..even a few sips, I got this very scary feeling. I still thought it was the mixture of my meds with caffeine..however when i woke up i did not drink anything and realized this feeling that had plagued me disappeared. My boyfriend convinced me I was suffering panic attacks and working myself up "caffeine doesnt do that, it wont kill you". On my own, I just started drinking decaf tea and living normally. I decided to google the topic out of sheer curiosity, and to my suprise-- I am one of millions who feel this way. Now sometimes I still very mildly get it-- and wonder if other foods like brownies or foods with tannins may be to  blame?But i drink decaf tea with no issue, so I believe its just a caffeine allergy.
  when I did get "the weird feeling" the only thing that helped was sitting in my home, watching tv and relaxing until it passed. does anyone else feel that way? Really, the only thing I guess I can do is no caff from now on. Honestly, Im scared to even try decaf coffee-- doesnt this contain a little caffeine? any extra comments are appreciated.

[antouk]

Hello Kate,

I am kind of similar myself. I have never drank much caffeine in my life, the occasional Starbucks or a cup of coffee every two weeks if at all, though I have been addicted to chocolate I must admit.
Up until 6 months ago no problems, now every time I have some chocolate or a cup of coffee, I feel like crawling out of my skin and panic/paranoia that doesn't go away for at least 12 hours, sometimes more.
I have had intestinal problems for a year and a half as well,
Last summer when the problem started some of the things that were going on were: I was more stressed than usual, I started smoking again after quitting for 9 months and I was for a few months on the pill

I am looking into alternative therapies to clear this now, I can live without coffee no problem, but I love chocolate too much!

[toffolux]

I wish I had found this board sooner as I have been living in hell for over a year. Much of this recount is stated in retrospect, however at the time I could never put 2 and 2 together, nothing seemed to add up.

My first panic attack ever was in 1995, after being cooped up in an aeroplane for 22 hours. Everything was fine until after we had landed and were driving home I felt this anxiety attack come on. It was terrifying to say the least that I was actually willing to jump from the car on a 6 lane highway just to get some relief and fresh air.

Never having suffered from claustrophobia in my life I put it down to being in a confined space for too long.

10 years later after returning from another trip from the USA, (this time only 17 hours being cooped up) a few days after my return my wife and I decided to talk way into the night. We both love coffee and a large extra strong “bodem brew” with cream was the order of the night.  I woke up at about 5.00 am from the most horrific nightmare that I can only describe as pure evil. I got such a fright and almost instantly I knew something wasn’t right. Fear and panic overcame me, I felt like I was losing my mind, like a crazy person one sees in the movies. I ran out into the garden as if I could run from this experience. After about 5 minutes I came back in and asked my wife to take me to the ER as I was going mad or crazy. They ran all sorts of tests which came back normal infact they said I was in optimum health. This made the attending physician think I was experimenting with drugs. Finally the medical diagnosis made was a “PANIC ATTACK”.

How does someone with near perfect health have a panic attack? I had no real stress in my life everything was as rosy as it could be. We left with a packet of schedule 8 drugs in case I needed them. After that I was almost too scared to go to sleep.

Four months later on another trip to the USA, I couldn’t sleep on the flight, so I had a couple of drinks. Not being a regular drinker I thought this would help. It didn’t. Now awake I arranged a midnight snack would with 2 cups of the delicious strong coffee.
Seven hours into the flight the PANIC attacks started. Hot flushes to the face which moved like strong tingly currents down my chest and arms. Fear and panic started to overcome me. Fortunately I had two of the schedule 8 tablets with me from my last visit to the ER. Only 1 to be taken every 24 hours, I took them both. They did absolutely nothing. By now the flight attendants were panicking because all I wanted to do was open the door to get some fresh air. The strange thing is that part of my mind was in shear panic and the other part could see reason and logic.

I managed to hold on until we landed to refuel which was nine hours into the flight at Dakar in West Africa. No one is normally allowed off , however they let me get off and brought an ambulance around to meet the plane. I was not allowed to stay over in Dakar due to all the various diseases there of which I was not inoculated against. Fortunately the rest of my pills were in my luggage which they found for me. I took another two and the rest of the flight was history, I don’t remember a thing.

By now I thought I had acquired some panic disorder to flying and I still had some flying to do in the US and still fly back home. Believe me when I say that PANIC attacks while flying was the most terrifying experience of my life next to the awful nightmare.

One thing I noticed while in the US was that every time I drank coffee I felt a hot sensation coming over my face. I put this down to the heat of the drink.

The flight back home was without incident however on a scale of 1 to 10 and 10 being the previous panic attacks, this time they were hovering around 5, I just prayed for 17 hours.

By now I realised I had a serious problem but it wasn’t self evident as with other reports on this group, it was gradual. I kept on drinking tea and coffee although not to the extent I had before, however I still had not connected the dots.

Then a new symptom came along, a numbness of the forehead. This came and went for no apparent reason. I suffered a mild panic attack on another short flight back home but it was only 2 hours and I made myself stick it out. I think it had something to do with that part of my mind that still knew logic and reason. My desperate search for answers was prolonged due to my incorrect key words pertaining to claustrophobia and cabin pressures etc…

I then decided to go and see the physician who attended to me at the ER. She is a highly qualified specialist with a list of credentials a mile long. She remembered me and I gave a recount of the past years experiences. Not to worry, she finally said, I have a bag full of drugs that we can use to manage this disease. As I absolutely hate pharmaceuticals I was uneasy about this approach. I didn’t want to be managed; I wanted someone to tell me what was causing all of this.

ZOLOFT was prescribed and after taking only 2 of the lowest dose pills I was walking around like a zombie. I couldn’t even talk properly, mixing all the words up, so I threw them in the toilet.

She wanted to see me again in a week, but now I knew I couldn’t rely on the medical profession. I sat down and thought long and hard about my problem. By now I was absolutely convinced that my problem was not psychological but in fact chemical. I thought about my eating habits before and on flights as well as all the other times I had milder cases. This conjured up new search words for Google and Magnesium deficiency came up listing many of my symptoms. Searching further I noticed caffeine toxicity and intolerance also showing many of my symptoms. This was the furthest thing from my mind as I was still drinking coffee and tea without panic attacks but in retrospect I did feel uneasy. I also noticed that I was becoming frightful and movies that had violence started to freak me out. There were times that if a story or movie showed mental illness or suicide, I started to become fearful and an anxiety would come over me. Now I love a good action movie, I was in a war for two years for crying out loud, and now I was being reduced to someone who could only watch old musicals or cartoons and anything that was not out of Walt Disney was starting to scare the pants off me.
So I stared on a course of magnesium supplements, and they really started to help but on a scale of 1-10 my anxiety levels were still at about 3, so I started to only drink decaf and tea. The levels went down to 2. More research on caffeine and I found out the black tea also contained caffeine (45mg) as well as decaf coffee (4mg), so I switched to green and red teas and no coffee. The levels dropped to 1. There was still a buzz going on in my head, not audible but my head was just not right.

So now I started experimenting with different foods, and the final solution was sugar. So now I have cut out coffee and black tea completely and when I finally cut out sugar my Anxiety and Panic levels become ZERO. Finally I felt normal again.

It seems that for me, neuro stimulants was causing the panic attacks. What is an absolute disgrace is the response from the medical community. They are absolutely ignorant to this problem, quickly resorting to pharmaceutical synapse suppressing drugs, quite happy to let me walk around in a semi conscious stupor rather than accepting that there are other alternatives to their death defying disease management protocols.

If ever there should be a war on terror it should be aimed at these nincompoops.

[Jbeans401]

When I googled caffeine allergy I didn't expect to see so many people who experience the same thing that I do! At least I'm glad to see I'm not alone. I'm 23, and had all the same symptoms as many people here, my arms and hands were numb/tingling, even my stomach felt a little numb, my heart was pounding out of my chest and my throat kept swelling up! It scared the crap out of me, but when I went to the Dr and had all heart tests show up fine they said it was probably just a panic attack. How do dr's not make a connection?? If anything I've been LESS stressed out than ever, and I've always had coffee/tea etc, but it just hit me one night a month ago.
I never thought I could spontaneously become allergic to caffeine! But since I've had a couple of attacks I only drink decaf, and the couple times I had regular coffee or tea, sure enough my throat would close right on up! Also I didn''t see if anyone else had this problem, but over the past few years I had awful headaches, everyday and never even thought it could be coffee(since I've always heard coffee helps headaches) but since I've stopped with the caffeine- no more headaches. At all.
I wish I had found this board sooner! Or that caffeine allergies were known about more!

[n3722r]

I am also very glad to find this post.  My symptoms started a long time ago when I noticed that if I drank some coffee I would get very angry for no apparent reason.  I would tell people that coffee made me an ":Axe murderer!" so don't give me any.  However I still drank diet coke and decalf coffee.  Lately even those cause the same reaction.  I get unrealistically angry ( I am normally very patient), I also get swollen glands on the side of my neck and sometimes in my armpits.  The feeling is like a really bad flu, and I also get bad brain fog as well.  I notice it goes away in about 24 hrs, but I seem to get bad cravings for caffine that are hard to manage.  The doctors diagnosed me with depression, but I have conducted many tests on myself and now know this to be related to caffine.  

Does anyone have the type of reactions I do?  I also get the heart racing and sometimes sweats.  I think I am severly allergic to caffine.

[spaniard]

I have the same exact issue as you have.  Although we might have one thing different.  my heart rate was normal, but i felt like my heart was going to explode out of my chest.  i used to enjoy coffee all the time throughout college.  i had this great drink called a shot in the dark (hot chocolate with a shot of espresso. i had 3 shots in it)  i drank them at least 3 times a day.  and i never had an issue going to bed.  but towards graduation, i was starting to have panic attacks.  realizing that it was right after i had coffee.  then about 2 years ago, i was getting panic attacks every single day.  i saw a doctor, and we tried to associate it with the caffeine and sugar, and they did diabetes tests.  tests showed im not diabetic.  my blood pressure is fine, my cholesterol is fine.  so the doctor decided i stop having caffeine.  i did, and my anxiety kept happening.  i ended up controlling anxiety, but im afraid to have caffeine now.  i dont want that experience at all!  im hoping there is some sort of clue in this thread that i can present it to a doctor!  i hate living with restrictions, and asking people 20 times if its decaf.  i want my shot in the dark back!!!!!

[aprillove75]

This is amazing!  I new knew I was sensitive to caffeine, but this morning I had a cup of decaf, and all of the sudden I had a panic attack!  I had a few caffinated cocktails Friday night, and was in a panic attack all day Satruday.  I was going to call my doctor today after years of random panic attacks, and break down and ask him for some meds.  Instead I found this forum, took some Zoloft, and 20 mintues later, my anxiety is gone!  No more caffeine for me EVER!  Good luck to everyone here

[ElliePurple77]

I wish I had more time to write...I developed a sudden "intolerance" (I guess that's what it is) to caffeine and alcohol about 3 months after having my 2nd baby at age 31.  If I have one cup of regular coffee, within about 20 minutes I get a RIDICULOUS anxiety/panic attack, sweat, shake, can't think straight, upset stomach, sometimes diarrhea, and this horrible feeling of being terribly upset.  

With alcohol, I could have ONE glass of wine the night before, and feel like I drank a whole bottle of tequila and overdosed on caffeine pills the next day.

This all happened after a lifetime of coffee and alcohol consumption with no side effects at all.  In fact, I used to have a very HIGH tolerance for both!  I could drink 8 shots of espresso and still fall asleep (don't get me wrong, I only did that once in my early 20's because I had to drive another hour and couldn't stay awake....fell asleep on the restaurant bench with my unlicensed friend next to me).

I'm going to print out the relevant posts here and from some other sites and bring them to as many doctors as it takes.  I don't mind having to avoid coffee and alcohol, but this just can't be normal!  Plus, as an adult, I'd like a glass of wine once in a while, and don't want to have to worry if the waiter brought regular instead of decaf by mistake...

[Riiko]

I'm glad I found this forum as well as I have been trying to figure out if I am sensitive to something in the local pool or allergic to coffee. I had been off work on holidays for a month and when I went back, I had one coffee in the morning and felt like I was jumping out of my skin - my jaw felt weird and I was feeling anxious and jumpy.  In the afternoon I noticed when I was still that the skin on my legs was tingling.  That night in bed I was fully awake and felt like I needed to run a marathon. The thing that made me panic was that I had a buzzing, tingling sensation all over my body - particularly in the arms and legs and then waves of anxiety would come over me.  
I stopped drinking coffee and things started to improve, then yesterday I had a cup of tea late in the afternoon and haven't slept all night - alternating between tingling and burning and the occasional panic ie what is happening to me.
I think I need to cut out all caffeine.  But mine came out of the blue as well - I kept thinking maybe I am anxious but I wasn't, then as soon as I had a coffee - bang - I started feeling weird.

[TruthandGrace]

I am so glad that I found this forum!

I practically grew up drinking as much caffeine as I wanted, whenever I wanted. When I was 6 years old I developed an affinity for the taste of coffee & cream, and I had no problem drinking caffeinated beverages on a regular basis. When I hit my early 20's I would order caramel frappuccinos at Starbucks all the time...but then one day (about 6 years ago) something changed. One day I drank a caramel frappuccino from Starbucks, next thing I knew my chest tightened up, & even though I was yawning and inhaling excessively...it was still very hard to breathe. I felt tingly/prickly cold sensations all over my head, legs, feet, and toes to the point that they almost went numb. I became dizzy and light-headed, and my thought process was scattered, confused, & disoriented. It became a task to focus my eyes on things. I had the jitters and I was trembling within. My stomach ached and I had frequent bowel movements. I lost my appetite and felt borderline nauseated. My heart felt like it was beating out of my chest. The most creepy feeling of all was that I had this eerie sensation of being pulled out of my body into the 2nd or 3rd person...it was like my soul was trying to exit my body, so I tried to suppress this feeling because I thought I was dying. I told myself that I was just having a panic attack (which I had NEVER had before) or that my blood sugar was too high, but then I started to notice a trend that I only felt this way after I had caffeinated products. So I stopped consuming caffeinated products all together. But every now and then I'll eat/drink something that I don't realize has caffeine in it, until AFTER the fact of course.

For example, earlier yesterday afternoon I was in pain, so my mother gave me some extra strength Excedrin. I took 2 Excedrin, then about an hour later all of the caffeine-allergies started. I was so jittery, restless, and panicky that I felt like running down the block to wear myself out with the hopes that I would fall into a deep slumber, and sleep off the rest of this "high" from hell. I went outside for fresh air, then when it got too cold, I went in the garage and paced back and forth feeling faint, almost like my legs were about to give out. So I went back in the house, so at least if I passed out someone would witness it and call 911. While I was sitting on the couch reading, something told me to look at the ingredients of Excedrin, and lo & behold it contains 65mg of caffeine per aspirin...which means I had about 130mg of caffeine ravaging thru my veins. At that point, I knew that all I could do was drink some bottled water and ride it out.

What type of substance is this, that it makes people feel jittery, panicky, like they're dying, going crazy, and being pulled out of their body? I can't even drink half a can of mountain dew, because it has that "drug" in it (caffeine). Are doctors researching this?

[dizzytrucy]

Does anyone know how to get a test for caffeine intolerance or magnesium difficiency?  I have read a lot of the posts and have similar symptoms.  I just don't feel right.  My jaw feels tight, and it feels like my brain is not connected to my head - sort of dizzy, but not spinning.  I have no energy and feel sorta down.  I definitely have anxiety now and jump at the drop of a pin and I am more irritable.  I have had every test in the book from e-rays to MRIs and have seen every type of Dr including ENT, nerologists, chiropractor, TMJ specialist and the list goes on and on.  I stumbled across this.    I am 42 so I thought maybe it's age.... I don't even know where to turn.   I keep grasping at whatever a possible cause could be.  

[bluestlight]

          I posted on here a few months ago. After being a coffee/tea/caffiene drinker all my life I started suffering symptoms all of you have had out of the blue- very scary and disabling- i think the worst was the disorientation part, that dizzy fuzzy feeling where your not spinning-your just not all there. I couldnt even drive in my car. I wanted to give an update-- I stopped drinking caffiene for almost 6 months now and havent had that feeling at all. My symptoms and "panic attacks" have disappeared and I feel so much better. I even thought it was my pain meds at one point but nope. No Coffee, No Tea, No DECAF products either(they still had too much for me to handle), No Soda, No Chocolate, Nothing that resembles or mimicks caffiene like Guarana. Its a lot but its worth it.
         I dont think there are any tests currently that TEST for caffeine allergy- at least its what I heard. Most peoples doctors do not put two and two together it seems like. It seems most people who drank ALOT of caffeine or at least had it everyday are thepeople who built up this allergy to it..like too much of it backlashed on our bodies. Or maybe some sort of hormonal changes have made us more sensitive to it. I was wondering if this shows signs of some underlying issue??..as it seems so odd to allof sudden have a caffeine allergy.  Has anyone heard anything like this- i.e. maybe if your thyroid is underactive your sensitivity goes up?  

[NeeNee109]

I have developed a rash on my gums.  I also have a very rare blood disorder.  I questioned my doctors and no one knows what this is, I was sent to my dentist and she suggest that I get tested for Celic Disease.  I'm waiting on my results from 7 days ago.  I have removed wheat and glutin, but not coffee.  I woke up this morning and I did not have the gum rash.  I drank 3 cups of coffee this morning and I am now noticing the rash.  I also suffer from acid reflux.

Does anyone else have these symptons

[MrBdun]

Ive Been Reading Through These Posts, And There Is One Constant Thing. Weve All Been Able To Drink And Eat Caffiene As Much As We Want ALL OUR LIVES And All Of Sudden We Cant When We Hit Our 20's??? About 80% Of What I Read In These Post, The Symptoms Started In Our Twenties. I Wonder What That Has Do With It. I Was Put In The Hospital Because Of Anxiety Attack From Frink That New Nuero Drink (The Pink One) I Thought I Was Going To Die, As Well As All The Other Symtoms (symptoms) These Rest Of You All. Any Have Any Alternative Conclusions To This Besides Stop Consuming Caffeine? I Want To Know If The Symtoms (symptoms) Ive Had Have Caused Any Damage On My Heart.




I Miss Chocolate =(

[bmarv]

I to can't have anything with caffeine in it. Mine started when I had sugery for prostate cancer. It makes me hurt in the lower left side of my back when I eat or drink anything with it. The doctors can't figger it out and I pass all of their tests. Even a cup of decafe makes it sore. My question is What Happened?

[sandi0930]

Im am so glad I found this! I was so lost.  It started about 6 years ago when I started getting anxiety attacks....my body would start tingling, my hands would start to tense up and almost curl under like i was begining to go into a seizure, my mouth tenses up, my eyes start twitching, my stomach tightens like no other, i have shortness of breath, my heart beats very rapid, I get a lump in my throat like when your trying not to cry and become very nausea's, its a very uncomfortable feeling, sometimes lasting 10 minutes sometimes lasting hours.  Usually I have to take an Ativan to calm the symptoms.  For the longest time I didnt know what it was, and I still dont.  But everytime i tried to explain to Dr. what was going on they said it was an anxiety attack and put me on Ativan.  In time i figured out caffeine had some thing to do with this, that and certain kinds of alcohol.  I still wish i could find the exact reason my body reacts this way, it can be scary at times, esp not knowing anyone else that has these symptoms.  

[Monkmaster]

Your experience is almost exactly the same as mine.  I never grew up with caffeine, but I started drinking a lot of energy drinks in high school.  I never really had any adverse reactions until I was in college, when I started drinking about four or five energy drinks per day.  I didn't connect the caffeine consumption with the symptoms that I was experiencing: i just thought that I was just going completely crazy.  I would have panic attacks, pacing around my room thinking abnormal thoughts and having strange quasi- out of body experiences and hallucinations.- I would get strange urges just to get up and run out of my own body. I would experience violent and aggressive thoughts that I would never carry out, but scared the crap out of me.  Along with these thoughts I experienced many adverse physical reactions: sweating profusely, having tingling sensations throughout my body, and  having severe nausea and bowel movements; it was like my body was trying to get rid of a poison- and it would make me feel better to get everything out of my system.  I figured out that the caffeine was the culprit about six months ago, and I've slowly  improved... .  After about two months of not consuming caffeine it has felt like I've come out of a fog.  My mental faculties had been severely lacking, as well as basic motivation and organizational skills; I really didn't even notice how dumb and unmotivated I had become.  It's great that people are starting to become aware of this problem, because i think it might be a lot more prevalent than people believe.  If anybody is looking for some reading material, i found this this book to be informative and somewhat interesting

Welcome to the Dance: Caffeine Allergy - A Masked Cerebral Allergy and Progressive Toxic Dementia by Ruth Whalen

Thank you everyone for your comments and you are not alone!  I really want to start an awareness program because I'm sure there are thousands of people out there who have this problem and are completely unaware of it!  

[loutygirl]

I too had a sudden onset out of the blue chest pain, heart racing, and I kept going to pass out all the time, my body would start to tingle and I'd feel everything cloud over, it was severe for two weeks all tests came back negative for the two weeks the doctor said that two chambers in my heart were not pumping the blood right hence cutting off oxygen to my brain causing the fainting spells etc, when I first presented at hospital they said I had a high amount of caffiene in my system but I had only had one cup of coffee now they are putting it down to severe anxiety and stress.
That was a month ago Ive had no caffeine in this time so tried a cuppa this morning and wam I feel jittery and have chest pain ????

[dg100]

I found this post a few months ago when I suddenly experienced what many people here describe. I had NOT had a gardasil vaccine, but I did develop a very sudden intolerance to caffeine even though  I've been a coffee drinker for 20 years! I had a bunch of lab work done and found out I had a severe Vitamin D deficiency. Normal blood levels are 30-100 (don't know the unit of measurement they use) and mine was 14. Although Vitamin D deficiency is very common, doctors rarely test for it. This is unfortunate because this deficiency has been implicated as a possible contributing factor to depression, colon cancer, breast cancer and MS.

Anyway, I don't know if that is what caused my caffeine allergy or not, but I'm back to drinking my coffee and/or tea and I tolerate it just fine again.

Hope this can help someone else! (I'm kind of curious... If anyone else gets their Vitamin D levels checked, will you post your results?)

[Splicer4F4]

I'm 48 and have had caffeine issues since late 20's when I had many bladder infections and took lots of antibiotics all the time.  I had an active Epstein Barr virus too.  For all these years, I've been looking for answers because I want to be able to have caffeine.  My tolerance increases when I do a liver/gallbladder cleanse, take the antibiotic flagyl (which suggests a candida connection) or take Candistroy from Nature's Secret, but nothing is better than NOT having caffeine and alcohol.  And I do notice I feel slightly better when I'm diligently taking my calcium/D3/magnesium supplement.  It frustrates me to see my friends and husband enjoying caffeine without effect, and I think that's why it's so hard for me to just accept that I can't have it.  BTW, when caffeine (even in minute amounts) is a part of my life, I have muscle burning, depression, skin rashes, insomnia, bladder discomfort, thirst, mild headaches, bloated stomach, no energy, and exercise is a lot harder.

[icepepper]

I am so glad I found this thread.  I have had a handful of things that started happening to me about 6 years ago, and after reading these posts I am convinced that they are all related to caffeine.

Unlike most of you, my intolerance did not happen suddenly.  I believe it built up over a number of years.  It started when I was 22.  Over the years I experienced heart palpitations first, then a few years later horrible attacks of dizziness and brain fog.  I remember describing to someone that I would feel like I was drunk sometimes when going through my day-- even though I hadn't drank anything alcoholic for weeks.  The dizziness was bad enough that I went to the doctor (not like me) and they told me it was just stress and I needed to do self massage on my upper neck.

A year or two later the panic attacks started.  For me they were almost always at night.  Chest pain and EXTREME paranoia.  This is so atypical of my personality.  I am a very laid back, very logical person.  Happy and enjoying life.  The paranoia/panic attacks would be accompanied by an extreme amount of adrenaline.  I could feel it pumping through my veins every time a little noise or creak would happen in the house.  I would fall asleep then wake up with a huge rush of adrenaline and my heart would be racing.  I remember thinking, how can this happen when I am woken out of a dead sleep?  Shouldn't I be having a slowed heart rate?

Eventually I started experimenting with my diet because of awful muscle cramps.  Particularly in my feet and calves.  I cut out caffeine at one point and noticed one day that I hadn't had a panic attack in quite some time.  Then I started paying attention and sure enough, scary movie + big soda = panic attack at night.  At first I thought the movie was more of a culprit but I have since realized that it is definitely the caffeine.  

I now drink herbal tea at work and caffeine-free sodas, and it has made a huge difference in my quality of life.  I will occasionally drink some caffeinated beverages, but it comes with a price.  Since eliminating the caffeine, I realized that along with stopping the panic attacks, I haven't had heart palpitations or dizziness since.  And the muscle cramps have improved quite a bit as well.

I also wanted to mention that when it is at it's worst, I can even feel the caffeine in decaf coffee affecting my body.  So don't rule that out.

Also, has anyone seen this to be hereditary?  My sister has struggled with hives and dizziness for years with no end in sight.  I am going to tell her about this forum and see what she thinks.

[RazzleDazzleC]

I'm so glad I found this forum!  I, too, at 23 years old, have just developed an intolerance to caffeine.  

It started this last Monday - I had a sweet tea (which I drink a lot of here in the South) at lunch, and throughout the rest of the day started having PMS issues, the symptoms I always get one day out of the month right as my period is starting - severe lower back ache, fatigue, general crankiness.  But it wasn't the right time for these symptoms.  I rode it out, but a few hours into the afternoon while I was at work, I decided I needed some coffee to keep me going.  So off I go to Starbucks, grab myself a regular coffee with half and half, and drink it all in about a half hour.  Not too long after this (maybe 30 min.) I began to feel really weird.

I had never experienced anything like this before.  My muscles burned. My skin tingled.  My feet and hands felt like they were on the verge of falling asleep.  I felt horribly flushed and feverish.  The worst part was the mental aspect - this was hell.  For HOURS I had this bizarre sensation that God was peering directly at me and pulling me out of my skin.  I had a knot of dread in my stomach.  I felt like passing out.  My mind was buzzing, I couldn't focus, I literally felt like I was going crazy.  I had this sensible side of me telling me that none of my paranoia had any basis, that I was fine, that it would all be over soon and everything would get resolved, but I honestly don't think I would have been able to make it through the experience without having a breakdown if I hadn't had customers to focus on.  By the time I got home, I was feeling better - I felt like I was back in my mind and skin, so to speak, but the trauma of the experience was still with me.  

The next day, the paranoia felt like a distant dream.  I felt settled again.  At noon, I had a soda, and less than an hour later, it started all over again.  I wanted to crawl into a dark hole and hide - I wanted to cry, I wished I could pass out just so the horribly intense feeling of being pulled out of my skin would go away.  My heart raced.  It felt like my skull was trying to push itself out from under my scalp.  Again, I felt like God had this malicious intent toward me, that I was being pulled toward this inevitable end, and it scared.  The.  CRAP out of me.  I had to get up, go out of my room, and walk around upstairs; I stood near the window and just tried to not think about anything.  I had to keep moving to try to run away from these thoughts.  My sister once had Guillone-Barrea syndrome (however that's spelled), and the physical symptoms were so unusual that I honestly feared I was about to be paralyzed.

Then it clicked.  Caffeine.  That was the only common denominator for my two panic attacks.  

I immediately hopped online and searched for "caffeine allergy" and found a general medical info site that said there can be side effects to caffeine intolerance such as hallucinations and panic attacks.  And then I knew for a certainty that that's what was happening to me.  I've never had a problem with caffeine before - I didn't drink it all that often, but the past few months I have had a lot more than I usually do.  I'm not going through a particularly stressful time - quite the opposite, in fact.  And I'm in very good health.  

Still, I wanted confirmation that I wasn't really going insane (and the paranoiac effects had yet to fully leave me alone), and I was so relieved when I found this site.  I think I might have to avoid chocolate besides coffee, tea, and soda - I had a Rolo this afternoon, and my mind is still feeling a little...off.  I'm still a little obsessive about the "God is trying to kill me" thing, lol.  My powers of logic and reasoning are back in full force, though, so I now that I know what to avoid I'm confident that I'll never have to go through those horrible experiences again.  I do feel fortunate to have experienced this though if only because it allows me to now empathize with several friends I have who struggle with panic attacks.  

Phew.  I don't know that I'll ever have the desire to touch caffeine again.  Those attacks were the most terrifying ordeals I've ever gone through.        

[pyrmontboy]

My experience is similar to some of those in this forum. I am 32 and have drunk a lot of coffee since I was 16. Last year at work in the office one day, after having an espresso in the morning, I just felt like I passed out and came to again. I was also finding at night, after drinking coffee in the day, I would wake up with numb arms or legs. I got all the tests done at the doc's and the only thing they found was a mild Vitamin D deficiency.

But the problem has continued for about a year, if I drink any coffee now I feel worse, dizzy, brain fog and irritated, kind of like low blood sugar symptoms I imagine. It used to pick me up so much. I tried one just recently and the same thing happens.  The funny thing is I can drink a cup of tea and feel alright (although still a little dizzy).

I think the comment about the liver enzymes is onto something... but am perplexed.  Can I ask that people contribute some of their blood test results? If we find a common pattern amongst us we may just solve this thing and be able to sip on our lattes again.

[ke20]

Im 18 and similar stuff has been happening to me as well. Mostly panic attacks, hives, and other things like hives and palpitations.

I did some researching after spending a miserable summer doing nothing but sitting inside taking new medications that doctors kept giving me (what else can they do really) for my allergies and suspected asthma, but in reality all they did was make my condition worse. Eventually I stopped medicating and started getting smart.

I did some research, cut out caffeine, all processed foods, and medications and the panic attacks are gone. Also for my allergies I did something called salt-therpy which opened me up without using allergy medication.

Anyways, I am getting tested now for suspected gluten intolerance and hopefully this will be behind me as I already feel a lot better after cutting out certain foods and also processed foods.

[lindsay1978]

I have a similar experience to all of you.  I started on the coffee when I was about 13, and at 31 I was drinking about 8 cups of weak milky coffee per day.  I actually found that caffeine barely affected me.  However, after a weeks holiday, during which I never touched caffeine, I found that I could no longer touch a drop of it.  It took me a while to realise it, since I had been drinking a lot of alcohol on the holiday, so thought it might be the after-effects of that.  But, after a week at home, trying to have my morning coffee, I was getting very jittery, and also found that I wanted to grind my teeth all the time.  I gave up coffee, but now, after 2 months, I've found that I can't drink tea either.  It's a great dissappointment to me, since I loved coffee dearly, and had learned to love tea.  I have read that it's possible to have a sudden sensitivity to caffeine, but it's pretty grim, when you loved that caffeine kick as much as I used to.  Still, I just bought some caffeine-free tea bags and coffee, and will give it a go.  Because, quite frankly, I do not enjoy the caffeine overdose after-effects!

[StarWarsFans]

I'm so glad I found this.  I have been going crazy for the past two months trying to figure out why I keep passing out and having dizzy spells.  I've had a CAT scan, echocardiogram, holter monitor test, and countless amounts of bloodwork.  Nothing seems to be "wrong".

After reading this, I remembered that prior to having the dizzy spells, I had been taking BiOptimas AcAi to try to lose weight.  It contains 50 mg. of caffeine anhydrous and I took it 3x a day.  My symptoms didn't start until after I'd stopped taking it (it caused me other problems so I quit it), so I didn't think it was the problem or even mention it to the doctors.  

I think, however, that the damage is done.  It's somehow altered my body.  Anytime I have a soda now, I get dizzy just a few hours later.  I will never again buy  a dietary supplement off the internet.  I will always get a doctor's recommendation from now on.  You never know how somethings will affect you!

[guitarstruck]

These comments have been extremely informative.

Personally I have finally come to the acceptance that I have an extreme reaction to caffeine.  In my case it causes not only anxiety but also extreme irritability, short termper and a general reduction of my cognitive abilities including organization abilities, social skills and understanding.  My head just generally feels fuzzy.  Although the initial effect of the caffeine makes me more sociable, it mainly makes me introverted, depressed and unable to connect with people emotionally.

I'm normally a pretty sensitive person, but with caffeine I feel completely emotionally raw, like I'm on fire.  I've become aware enough to stop myself, but it can easily send me into a downward spiral of anger or depression from just a small negative event.

In addition, it interferes with my sleep even if I only have it in the morning.  At night it causes teeth grinding and exacerbates my sleep apnea -- I've found research that caffeine is linked with both of these.  It also causes or greatly exacerbates my tinnitus.

As if that wasn't enough, caffeine also makes me lose consciousness, half-way between falling asleep and fainting.  It generally only happens when I'm sitting down and not moving, but once it happened while I was standing and talking to someone.  I even lost a job because I was falling asleep uncontrollably in meetings.  I think it's partly a direct effect of going into shock, and partly a cumulative effect of loss of sleep.  (I went to a sleep clinic and they couldn't figure out what was happening, so they gave me an experimental upper designed for the military that eventually just made things worse.)

Finally, repeated exposure to caffeine wreaks havoc with my ability to regulate my blood-sugar levels, and then almost any food can send me into a hypoglycemic trance.

Interestingly, I'm also gluten intolerant (or celiac, not sure), and very sensitive to alcohol.

Anyway, if I have even a small amount of caffeine every day, life generally deteriorates to a living hell, and I become only semi-functional at home and at work.

Having said this, it's not so easy to keep completely free from it.  But the one time that I went without it for over a month, I felt sparkly and motivated most of the time.

For another interesting piece in the puzzle, read "Potatoes not Prozac", which explains how different foods affect neurotransmitter systems and blood sugar levels.  For me, I think a big effect of the caffeine comes from the way it dysregulates my blood sugar levels.  From what I've read elsewhere, it's common for allergies to cause a temporary rise in blood sugar.  But I understand that caffeine can increase blood sugar even without an allergy effect.

-Guitarstruck

[ythander]

Like everyone else who has posted here, I'm so glad I found this forum because I was feeling like some sort of freak in that at the age of 47 I had apparently developed a sudden and violent intolerance to caffeine after decades of being a happy coffee drinker.

Although I once drank as many as 10 or 12 cups a day (I don't drink alcohol, so coffee is very much a social activity for me), I did cut down a lot on my doctor's advice because I developed hypertension in my 30's, and there were no other contributing lifestyle factors (not overweight, not a smoker, etc).  And I'd been having a lot of difficulty with insomnia, so I wouldn't drink any beverage with caffeine after lunch time.

On a recent vacation (when I should have been happy and relaxed), I ended up consuming 3 or 4 large glasses of Pepsi one evening, followed by 2 cups of coffee -- then had terrible insomnia, and ended up not sleeping at all that night.  Felt like my adrenalin or something was extemely elevated, my pulse was racing the entire time, the whole "crawling out of my skin" feeling.  So, having not slept, I promptly started drinking coffee to keep my energy up so I could function during the day, but carefully cut it off at noon.  I was so exhausted, I thought I'd sleep like a log that night -- unbelievably, despite having been awake for 40 hours at that point, I could not fall asleep.  My anxiety level was through the roof, I was really panicking thinking I was going to have a stroke or heart attack because I was already aware that my blood pressure is way too high (I am now on medication for it).  I only slept after having an alcoholic drink, which knocked me out because I am so unaccustomed to alcohol.

A few days later, I happened to notice the same adrenalin-charged, anxious, heart-racing symptoms a short while after my usual morning coffee and decided to give up coffee to see if caffeine was the culprit -- and started feeling normal again.  But until I read the posts on here, I couldn't grasp the idea that I had suddenly become sensitive to something I had consumed since I was a teenager.

[lover_of_roses7]

First off, thank you all for your posts. It is SO NICE to read from other people who are experiencing this.

I have a really important question: how long did it take you to feel normal? I've been off of caffeine (all forms, including chocolate) for a week now and I still feel terrible...

[icepepper]

For me it is not long-- as soon as the caffeine is out of my system I feel normal again.  So it's usually a matter of maybe 6-12 hours after I had the caffeine.  Although getting off of caffeine took maybe a week.  I would get withdrawl (withdrawal) headaches at first.

[ania89]

Hey guys, I admit I didn't read the whole thread, but I don't have much time;) so I just wanted to post this:

The REAL underlying cause of your allergy to coffeine (and other symptoms) may be MERCURY TOXICITY. Actually, mercury is present in many VACCINATIONS as a "preservative". It is also present in amalgam fillings (50% of amalgam is mercury) and sea fish. There are many possible sources of exposure.

Anyway, mercury is highly toxic. The symptoms of mercury poisoning often last for years (I heard that after 18 years only HALF of the mercury in our body is gone) and often this condition is not detected,

I suspect mercury toxicity in my case. I'm not 100% sure, because it's hard to detect by typical tests. I've had hair analysis done and it showed VERY low level of hair mercury, but this can actually mean that you DO have a mercury problem, because your body cannot excret mercury effectively, therefore it's stored in muscles, kidneys, brain etc and not excreted. Almost every vital mineral is also LOW in my case and hair Zinc  was elevated, I read that's a strong evidence of mercury toxicity.

Anyway what you should do is CHELATION or DETOX: it can be done either with drugs like DMPS, DMSA, EDTA or naturally with: chlorella, cilantro, bentonite clay baths, MSM, alpha-lipoic acid etc.

So I'm pretty sure that mercury is the cause of my problems and here's one another thing which refers to caffeine:
I had some allergy tests done (for IgG reaction which is a reaction that occurs 8-72 hours after eating sth, the other type is allergy with IgE which is immediate).

So basically 4 things came up: I had a STRONG (in a 0-4 scale I had 4) reaction to GLUTEN, strong (4) reaction to milk, some reaction to chicken (1 on the scale), and, yes, CAFFEINE - 3 on the scale. Other foods like vegetables, fruits, seeds, nuts, soy etc. caused no allergic reaction (0).

I read that mercury interferes with enzymes that are necessery to digest gluten and kazeine (milk protein). Maybe there's some reaction with caffeine & mercury as well. All I know is that caffeine allows the mercury to pass the cell wall, but I'm not sure what it means.

I wish you all the best and take care!
Ania

[cougheeman]

I think there are a whole lot of people out there thinking they're going crazy, but they're suffering from caffeine intolerance.

I've had this for about 7 years now, and the symptoms kept getting worse every time I accidentally consume caffeine. It only really affects me if whatever I had, was made directly from coffee beans. I really have to drink a lot of instant coffee to get the same symptoms. It also just hit me one day out of the blue after years of heavy filter coffee drinking.

I don't really want to repeat everything that happens, because everything has been mentioned before. But what I've learned over the years, that maybe able to help someone out there who accidentally ingested lots of caffeine, is this:

I've noticed that in some coffee shops, espresso is served with a all glass of water. I don't know if the water is to help overcome symptoms of caffeine intolerance, but it sure does make a huge difference. Just drink a tall glass of water every 20 minutes or so,  for about 2 hours, and you will feel a whole lot better.

Another thing that seemed to help that I stumbled upon while trying to find out what is wrong with me, as a medication called concor that a doctor prescribed to me. That seemed to block whatever caused my heart to beat so damn fast (I think it was just adrenaline) But I'm not a real fan of meds, but I keep some with me in case I really get a bad case.

But I haven't really needed to take any pills for at lease 2 years now, because I did what is the only cure for this problem. I stay away from caffeine. Switch to the alternatives, that's the only way.

I'm glad to hear there are many others with the same problem. What makes me angry about my whole ordeal with this condition is, that my previous doctor diagnosed me with anxiety disorder. (He didn't know it was caffeine that caused it, or maybe he did and wanted to make a buck, which is why I think this condition is not recognized by many)
Anyway had problems getting life insurance at some point because of the doctor's diagnosis. So my advice is: stay away from the doctor, and caffeine

[Cheekystrut]

I can relate to a lot of the symptoms, I always felt like I had a allergy to caffeine. But for some reason never looked it up or google it. Why I don't know, I wish I had. What I found was right away when I researched it. The symptoms were right there. I think the best way to describe it, is a "not being able to live in your own skin" this may sound strange to others. Another thing was in the website I found linked a lot of mental disorders to a caffeine intolerance. I suffer from anxiety. I'm on paxil 10mg. They help but I notice I feel awful still when I slip up and get coffee ice cream, or a half cup of coffee. I'm actually up now because I had coffee, chocolate and a screwdriver... bad combo. I instantly felt sick to my stomach, my head just felt sick kinda anxious and nervous. And I have insomnia now. Also when I have caffeine even small amounts my thoughts race and I don't want to be alone I want to talk to someone. This all kinda sound bazaar, but that's how it feels. When I don't have it in my system I feel great totally normal. None of the symptoms on anxiety. So research yourself there is documents by doc that back this and break it down to the science. Also to the people that have sensitivity or allergic reactions to caffeine, are you also sensitive to marijuana? Just curious. I have a ill reaction with that and wanted to know if there was a link between the two?

[sleeplesst]

Dear fellow sufferers,

Like many of you I have had years that I drank a lot of coffee; habit where I worked, and an addictive one. In the weekends I ended up with terrible headaches that disappeared after another cup of coffee. I should have stopped right then and there. Now I am to the point that I can't tolerate a sip of coffee. It completely messes up my mind, as many others have described. I have no proof of this, but wonder if it is related to oxygen supply to the brain (reduced upon caffeine withdrawal; compounds that stimulate blood flow seem to help (I am a Ph.D. biochemist using myself as a guineapig sometimes). As already noted by others, theobromine (chocolate) also messes me up, meaning that dark chocolates are off limit as well.

I believe that the problem we are suffering from is called multiple chemical sensitivity (see e.g,. wikipedia). This poorly recognized syndrome results in ever increasing sensitivity to fairly common chemicals, like caffeine. It is described in various research papers, including: Multiple Chemical Sensitivity:  Towards the End of Controversy by Martin L. Pall, Ph.D. from Washington State Univ. Apparently quite controversial, but I am believer. If only there was a cure!

Washington state also has a forum on this subject: http://wsmcsn.s5.com/

I wonder sometimes how may people are now committed to psychiatric hospitals which would be fine if caffeine wasn't there....
If anybody has a solution......

[Serjon]

HI Kelly and others, I have just come across this page and found it very interesting. I my self have been living with a caffeine allergy now for about 16 to 17 years now. It started all of a sudden. I used to drink coffee and soda daily then all of a sudden I just started to feel real bead every time I consumed it. My heart would race uncontrollably, I would shake, feel anxiety and have feeling of doom. It progressed very rapidly to having those feeling along with swelling of the tongue and airway. I didn't know what was the root cause at the time. I was rushed to the emergency many times because I couldn't breath. The doctor did do allergy test, however, they didn't have a test for caffeine but the results came back extremely hig for chocolate.

With time the allergy has only become worse, I have eliminated all caffeine out of my diet all together. At the samt time I developed an allergy to caffeine I also developed one to aspertame. That was why I was having such a hard time to pin point what was causing my reaction. One morning I would have a reaction after I had a sip of cofffee and the next day because I put a piece of gum in my mouth, it didn't make sense.

Like you I didn't get any support from the medical community. They act as though its just not possible to have a allergic reaction to caffeine. My family doctor did end up supporting me  after a while (who has since retired) I went to a walk in clinic last year and when asked if I had any allergies the doctor told me that was impossible it was all in my head because he don't know anyone one with a caffeine allergy :s  I have just come to ignore these people, you know your body better tehn anyone else does. People could call it allergy or any other word the wording don't make a difference its the reaction thats important. About 10 years into my allergy I met a woman who too was allergic to caffeine and aspertame. I don't know if the two usually go hand in hand or not but for the two of us it has.

I now carry an epi pen and refrane from all caffeine products. Caffeine is not an ingredient that is commonly listed and it has over 100 latin terms. A lot of medications have caffeine so be sure to check with your pharmacist before taking anything. As a rule of thumb if in doubt I stay away from it and if its dark in color I stay away.

I 'm glad this board exsist to make us all feel that were not alone like the many in the medical community makes us feel.

Good luck to you all :)

[mattyboy45]

I had a bit of a different experience that led to my caffeine sensitivity.  In my mid 30's after developing a severe back problem i started casually using marijuana after never having even tried it in my youth.  

One night out of nowhere i had a massive panic attack and ended up in the hospital thinking I was having a heart attack.  Tried smoking a few more times after that in lower doses but still had similar symptoms so I completely gave up marijuana.  Funny thing though.... the anxiety took a long time to go away and i became extremely sensitive to caffeine when i never had been before.  

Anxiety is a strange and complex thing.  It's as though once your brain is programmed for it it can become difficult to shake.  One thing I found very helpful during an attack (this might sound funny) is to try and be productive.  I found that if I got up and found something to "burn" off that excess energy my anxiety calmed faster than if i sat around worrying about whether I was dying.  it sounds ridiculous but if you consider that anxiety is like a snowball it makes some sense.  

Panic leads to concern which leads to more panic which leads to higher heart rate and BP, etc. which leads to fear of heart attack, death and hence more panic...  

I remember one night wanting so badly to stop focusing on my spiraling thoughts of panic that I just went into the kitchen and started meticulously cleaning.  My wife woke up the next morning and the thought Mr. Clean had paid a visit.  haha!  

It did help me though.  I think it's the same in theory as the fact that exercise often helps anxiety.  It's almost as if there is just a mass of pent up mental energy inside of us and things like caffeine, alcohol or in my case the adrenal response from too much marijuana can cause that energy to explode to the surface.  

It's a very complex combination of mental and physical factors.  In her 30's my mother developed caffeine sensitivity as well except with her it was just racing heart rate and sleeplesness and she did not experience the extreme anxiety i do but it shows that maybe i do have a genetic factor involved.  

A few times at work after drinking coffee i thought was decaf I just ended up jumping up early to go back to the job which had my boss scratching his head as i usually milk coffee breaks for all i'm worth. :)

So, that's my advice that those with panic attacks can try....bury yourself in an energetic function that forces you to think of something other than how your skin is crawling, heart is beating , etc.  

Just my experience, but during an anxiety/panic attack the absolute worst thing I could do is "lay down and try to relax".  All that does is freak me out even further.  

Mop the floor, clean the brid cage, VACCUUM.  That's a great one because you can do it as fast as you like.  Maybe not for everyone but that is what has worked for me.  The energy needs a release valve.  Sitting or laying and worrying just makes things worse.  

[batfly]

I noticed I have started to get bad effects from caffeinated beverages too.

If I drink more than 1/4 cup I start getting dizzy and my hands will get red and itchy and breaks out in a rash...

I noticed this just started happening the past couple of years... I am almost 40 and I use to drink many caffeinated beverages throughout the day without issue...

Something in my body changed... not sure what...  I have reasoned in my mind it must be because I am getting older?  But I also noticed the change happened after I stopped drinking city water... I have been drinking pure water that is generated from the air...  No chemicals like chlorine or fluoride in my drinking water...

Curious is there is some sort of weird conspiracy going on with our food supply? Hmmmm?

[burkey1]

I have had a caffeine problem since I was at secondary school in the early 80s. I had been drinking coffee and cola while studying. Suddenly I had a reaction like I was drinking alcohol not straight soft drink. It set me on a high I started skipping and singing then suddenly my arms and legs would tingle and I would pass out.
We started keeping a food diary and found caffeine was the link. I have avoided it for years.
Last week my decaf coffee from a shop I have been to before was not decaf. My tongue started swelling my face tingled then went numb. The girl I was working with was worried as I stopped making much sense. She arranged to have me taken home.
My system has gone into such overload I have not been able to work for a week. My tongue is no longer swollen but still tingles. My reaction times are off stopping me from driving. I have trouble with my legs and hands going numb.
This is the worst I have had so far. It worries me about what may happen if I have caffeine again.

[jack225]

Got the same problem as all of you, and I never touch caffeine. I got the impression that a lot of you guys even though you know that caffeine is causing your symptoms you still consume it. That is crazy!

[winnie555]

i have taking this energy drink which contains little amount of caffeine,but somehow i cant stop myself from taking it. somewhere last week, i developed a rash on the lateral part of my face which is really itchy...could it be as a result of the caffeine??...please help me

[hairflipper]

Even touching caffeine seems to affect me irrespective of the dosage. For example, after using less than 1/8 tsp of a sunscreen containing cocoa butter, I get a slight buzz, increased urination, and my sleep onset takes few hours. It applies to green tea extract also and whether the caffeine is oral or topical. Don't know if this is an allergy or because of heavy metals.

I become less functional as the days go by because of the cumulative loss of deep sleep. I don't mind avoiding chocolate or coffee but I am more concerned about the cause of coffee intolerance.

Maybe in celiacs, they are deficient in certain minerals and it changes the brain chemistry or because of dysbiosis. Research also showed that rats with sterile guts are more risk taking.

This is the post which says that caffeine enhances cellular uptake of mercury according to Haley.
http://orbisvitae.com/ubbthreads/ubbthreads.php?ubb=showflat&Number=45573

[dizzygrl85]

I wouldn't be surprised if it has something to do with hormonal changes, since you mentioned that it got better after having your daughter.

I used to work at Disneyland, and in order to keep that required "peppy smile" on my face at all times, even when I didn't feel like it, I relied on energy drinks. Usually about one a day whenever I had a shift. I don't ever drink coffee, can't stand the taste, but the energy drinks worked. That was about 3 years ago, and I never had any sort of bad reaction to it. I also loooved Dr. Pepper. Right around that time, I got married and started the birth control pill.

Long story short, in the past 3 years, I've had all sorts of scary symptoms, vestibular migraines, dizziness, lightheadedness, feeling cold and shaky all the time, and just general weakness. It was awful! I finally figured out that it was the pill, so tried switching to a different kind. Well, then I got a whole new set of symptoms, panic attacks. I'd NEVER had one before, but these would come on randomly in the middle of the night or whenever my body became stressed (like a tiny sunburn) or experienced a change, like the weather going from sunny to cloudy. It was all the time, and I often felt like I was about to die. Shaking all over, breaking into a cold sweat, feeling like my head was floating off and I was about to lose consciousness, while my heart pounded like crazy. It often lasted about a half hour or so, during which I would drink hot water to warm up until it wore off. Then I'd feel fine, just incredibly weak and tired.

I also made a correlation that this would ALWAYS happen after consuming any kind of caffeine. If I had even half a can of soda, or took an Excedrin, I would without fail get an attack a few hours later. It made me so sad, because I love the bubbly taste of soda! I've slipped up a few times, hoping it won't happen, but it always does, sigh. So apparently I'm now intolerant to it.

I've recently stopped all hormonal medication, hoping my body will revert to normal again. It's been a tough month so far, since I'm so out of whack still. I feel jittery most mornings, like I want to crawl out of my skin, and I've had more recent attacks. But I know it also takes time to adjust, so I'm hoping it will get better with time as I readjust. I've done a few "tests" and tried soda as an experiment, and some times I've been absolutely fine, to my amazement. But other times it happens just like before, so I think I'm better off sticking to water and juice, just to be safe. Probably healthier anyway.

It's just so weird that after 20 years of having caffeine with no problem, something like this can just suddenly develop!

[bebe11568]

Wow, I thought I was the only one.  This happened to me about 3 months ago after taking the drug Cipro for a UTI.  I have been an avid caffeine user for years.  I always had an energy drink in the morning and maybe a coffee or two later in the day, and even on some days take a diet energy pill.  After years of this and feeling amazingly fine I had a reaction to the Cipro which had me in the hospital after fainting.  Ever since that day I am unable to drink caffeine or decaf.  Everytime I do I have a major panic attack even later in the day when the caffeine should be out of my sysytem.  The caffeine has even casused me to have severe hypoglycimia(sp?).  After a drink maybe half a cup of coffee in the morning by nighttime or even before sometimes I can't keep my blood sugar up.  It's crazy.  Nobody understands what I am talking abouit.  Thank you all for posting. Now I don't feel alone, budt I do miss my coffee:(

[icepepper]

I posted on here earlier. Interesting about the cipro.  I also had a UTI a few years back and took that same medication.  Now I'm wondering if it's related.

[seattlemom2plus]

I am glad there are people posting on this.  I have been a coffee drinker since I was little and only this past year and a half have I been having an intolerance.  It takes about 10 hours to build up in my system because usually by the next day I have cold like symptoms, lots of mucus, sore throat and tired.  So interesting to read others symptoms.

[tehmollykatherine]

Oh my gosh, this EXACTLY HOW I FEEL!! Right now its 2:30 am and I tried going to sleep and BAM! This has been going on for about a year, and I mistakenly had Barqs root beer earlier today, just a tiny bit! Like maybe 10 ounces, and I forgot it was the only root beer that had caffine in it (of course my luck...)

It honestly makes me feel less insane to hear that I'm not alone in this! Someone needs to study this, were suffering and need answers, this is serious stuff, I mean, feeling like I'm dying sometimes and explaining what I feel to my doctor he just looks at me with a blank stare, dumbfounded. I've felt so lost and alone!

[seattlemom2plus]

Yeah everyone says oh just cut down but it seems like its all or nothing with it.  Frustrating indeed. :)  Glad others are posting!

[tdotpopcornz]

wow, iam so glad i found this comment of yours because just the past 4 months i suddenly became severly allergic to caffeine, at 44 years old, after drinking pop my whole life.  I just now over the past 5 weeks, started to putting it all together.  started with a suspicion and then on a trial basis went off caffeine for a week, with no physical problems then i tried one glass of pop and i went into this like weird feeling, like the room was spinning, started wheezing, my fingers tingled, dizzy and my heart was "racing" and on top of that put me into a panic state...weirdest thing...went another week without caffeine and was stupid enough to try one more glass of pop 4 days ago and wham...felt like i was dying again! ...your not alone, thats for sure....iam done with caffeine for good this time...scary experience...

[seattlemom2plus]

yes I have to question what is different...is the ingredients in coffee?  or have I been neglecting the symptoms all my life?

[avricardo]

Hi guys.

I seem to have a milder problem than most people who posted here, but I'd still like to share it with you as I am not entirely sure if whati I have is caffeine intolerance, migraine triggered by caffeine amongst other things  or insuline problems.

I used to drink at least 4 coffees a day, including espressos. When I quit smoking at the age of 25 (7 years ago), I reduced my caffeine intake from 4/5 to 2 per day.

Three years ago, I had a horrible experience, which was mixture of a panic attack with a very strong migraine. My head was aching in a pulsating way, I tried to go to bed to make it go away, but when I lay down, I felt like vomiting. I then went online to look for a doctors number (I had just arrived in Paris for a year of Uni studies and didn't know any doctor there), but I couldn't stand the light of the computer screen. Went back to bed, and the same cycle happend at least 5 times and I thought I was going to die - couldn't lie down, couldn't vomit nor stand any type of light. Finally I fell asleep and felt better after sleeping for 3/4 hours.

In the following weeks, I went and saw a number of doctors and was finally diagnosed with migraine. Some doctors recommended that I drink coffee when the migraine is about to start, others recommend that I don't because caffeine can be a migraine trigger. The latter seemed to be right. Nowadays I know that If I have nice goog-quality strong coffee I'll have a migraine for certain.

However, having been consuming (should I say addicted to) caffeine for so long, I still have a little tiny bit in the morning - maybe 20ml of weak coffee mixed with soy milk (I also seem to be lactose-intolerant, but this is less problematic to me).

Anyway, the point I want to reach is that when I'm feeling tired, usually in the afternoon, I crave things that have caffeine and sometimes I only realise I'm consuming it (I become like a wild animal in search of what I need) I realise I am consuming and that I should probably not but then it's too late and BAM I have a migraine.

So it's like an addiction and when I realise I've had what I should not have, I say to myself I deserve it.

Now, besides the problem of going for caffeine almost unconciously, I have another one: I have migraines even when I didn't have more caffeine than I morning tiny fix.

I also sometimes feel unsociable and irritable. That had never happened to me before starting having caffeine-related problems. But since I started having them, that's happened to me so many times and I had no idea it had to do with caffeine. But nowadays think it does. Someone else here also said this happened to her/him.

I no longer drink and soda, good-quality strong coffee nor açaí smoothie with guaraná syrup (so common in Brazil) and I will try to stop my 20ml morning caffeine fix for good (I was 'dry' for a long time but then started having it again).

Finally, I am not sure if this is related to caffeine at all, but I've also been having strong sugar and afternoon-naps cravings. I read somewhere that it's got to do with the fact that I am not getting enough insuline naturally (if I understood well), that that makes me tired and as consequence I feel Iike drinking coffee and having sugar. Because I tend to avoid the coffee (unless I do it 'unconsciously' as I said before), I go for the sugary treat and for the nap, the sugary treat need is so above average that I found myself hiding (from friends and family) when eating sweets. As for the nap, it's embarrassing: I'll sleep anywhere after lunch: library, classroom, home, work. Usually a 15min nap does the job, but a lot of times I don't have the structure and the rest of my day is ruined because I'll either feel extremely tired of have coffee and then have a migraine as a consequence.

Anyone with similar symptoms and/or advice?

Warm regards from Brazil.

[icepepper]

It's possible that consuming the caffeine was masking an energy issue.  I found that without caffeine I have to make sure I sleep more at night or else I go through the same cycle you do.  With caffeine I could do 6 to 6.5 hours a night and be okay.  Without it I have to do 7 to 7.5.  I also have to make sure I eat every couple of hours.  A small snack, like an apple or nuts.  If I try to go with the traditional three larger meals then I also end up tired around 3 PM during the large gap between lunch and dinner.  I was previously using caffeine to get through that slump.

[seattlemom2plus]

I have the same issue with the sweet cravings except I notice this more with having coffee.  The less caffeine I consume, the less sugar I crave.  The 3-6 PM slump I do tend to get, I try to do exercise or go for a walk when this happens.  Right now I am back to getting a coffee fix :( but going to try again this weekend with switching out to tea.

[Stephs1994]

bebe, you are on to something with the Cipro.  I googled it and here is what I found:

"Just like BAYCOL and other fluorinated drugs, ciprofloxacin is a potent inhibitor of the thyroid hormone-regulated P 450 enzyme system in the liver. Of all fluoroquinolones, ciprofloxacin and enoxacin have shown the greatest inhibitory capacity (4).

   P450 IA2 prevents the metabolism/inactivation of methylxanthines, thereby causing increased serum concentrations of drugs like theophylline and caffeine, which in turn causes excess CNS and cardiac stimulation. As mentioned above, CIPRO also elevates serum fluoride levels."

Take note of the part where it says it prevents the inactivation of caffeine!!  It must somehow cause a permanent decrease in this enzyme system responsible for metabolizing caffeine.  And it looks as if the fluoride is the culprit.

I also have a caffeine sensitivity.  I figured it out last November.  Looking at my records, I found that I had taken Diflucan in September of 2010.  I looked it up--Diflucan is a compound that consists of fluoride!

[HRoss]

Welcome to all newcomers to the 'Why can't I have caffeine?" club.  My story is just like yours - one night I could have caffeine, and did several times a day - and the next night I was in the hospital hyperventilating and fibrillating.  24 years old when it happened.  I'm female, which also seems a commonality we have.  It runs in my family, too.  My mom and both of my aunts are caffeine intolerant.

I just want to scream at evey barista in the world about this condition.  They don't care or understand.  I've given up on Starbucks and Dunkin Donuts because reaching over to get a decaf instead of a regular seems to be too much of a strain for them.

Once I bought bulk coffee beans from a grocery store and guess what - someone had filled the decaf bin with full caf coffee.  And this isn't something to be taken lightly for most of us.  For me it leads to :  Severe headache, diarrhea, dizziness, palpitations or fibrillations, inability to sleep (for at least 24 hours after consumption), shaking, cold and hot flashes.  Just a complete disruption for at least a day.

So my plan was to find a good brand of coffee, get a french press, and make my own.  Seattle's best decaf is good, so is Medaglia D'oro.  Both are difficult to find, so I stock up when I can.  Auguson farms sells a chocolate milk powder that, when added to espresso and a cup of ice makes a DELISH iced coffee.(morning moos)

If this was a penis problem, you know doctors would be all over it, there would be awareness campaigns and charity runs.  But since it is a problem predominantly with females, we just get ignored.

And here's what I want to know.  Since caffeine is considered a drug, why isn't it controlled?  I think anything with caffeine in it should have dosages listed on the label.

Caffeine intolerant unite!

[HRoss]

As a side note, this all began after a REALLY bad cold/flu.

[seattlemom2plus]

I am so glad people keep adding to this thread, keep the information coming.  I also notice that after the caffeine builds up it also starts disturbing my vision does anyone else have this happen to them?

[matt787]

This happened to me a long time ago, and it took a great deal of researching to figure out what was going on.

You don't have an allergy.

You had an idiosyncratic toxic reaction to something, not caffine. This caused damage to your nervous system, likely your GABA receptors. Your brain has now become more sensitive to certain chemicals. Everyone will tell you that you have gone crazy. But if you just avoid the stuff that bothers you, eventually, over a few years you improve.

This is very similar to benzodiazepine withdrawal, things that bother someone with that condition also cause bother to you. Avoid those things.

I had this happen to me twice, I stopped complaining after the first time, because all the doctors said I'm crazy. Well I may not be a doctor, but I am a scientist, and I researched for years to figure out what had happened to me.

The first time it happened after having avalox which is a quinolone. For months after I had all sorts of problems, couldn't have chocolate, or caffine at all. The next time it happened was after the flu vaccine. It wasn't the vaccine but the antibiotic that they put in the vaccine to keep it from contamination.

[seattlemom2plus]

I do agree with this theory, my husband loved strawberries when he was little but one day became allergic to them, then 9 years ago he quit smoking and months later was able to enjoy strawberries again.

Ugh why is caffeine so hard to quit :(  How long does it take to get out of your system and what helps you ween off?

[tulakmato]

Hi everybody,

I´ve just found your thread and my story will be long. I am a doctor, suffering from the same problem as you for more than 10 years !!! So far I found no solution to my problem. It all began in a period of my life when I was permanently stressed, worked very hard, having frequent viral and bacterial infections. As these were like nose, throat, lungs or paranasal, I took ATB and never stayed home (this is the way doctors cure themselves). Apart form being exhausted for a long time I was in perfect health. Having one of my frequent "non-cured" infections I went into a party and had some alcohol (I do not drink regularly). A cup of coffee next morning and that afternoon I will never forget. After being completely all right, out of the blue I had a feeling I was going to die. Many had described it here perfectly, I have nothing to add, but no one can understand until he experience it. Severe anxiety, chest pain, fainting . . . ECG normal, BP normal, I was sent home from hospital as beeing completely fit. But from that very day I was never the same. I cannot even look at the coffee, you could use me as an indicator of how much caffeine is in which product. . . Even though I do not drink coffee, I still experience anxiety, chest pain, vertigo after any caffeine or adrenalin impuls. Even when I am stressed without caffeine all this can come. I have been investigated thoroughly several times and apart from a suspicion on "parcial autonomic failure" nothing was ever found. I consulted psychiatrist of course, as I believed, that connection with my stressfull way of life is clear. I was told to have nothing to be cured, from her point of view I am completely healthy. If anybody has more or wants to learn more, I will be more than happy to stay in contact.

[icepepper]

Interesting you mention the infections.  What is ATB?  Antibiotics?  I did mention I remember having an infection and taking ciproflaxin during a period when I first remember having the caffeine reaction/attack.  Also, it was maybe a year before the first caffeine reaction, but I had taken minocycline for an extended period of time as well.  It would be nice to have some solid cause to point to as the source of this caffeine intolerance.

It has been maybe 4 or 5 years for me since I started having these reactions to caffeine.  I too have found no cure other than not ingesting caffeine.  I have found that I can occasionally drink maybe half or a quarter of a soda without ill effects... but not on a regular basis.  I can even feel the caffeine in decaffeinated coffee and dark chocolate.

[seattlemom2plus]

very interesting input indeed, I have noticed even breaking out in cold sweats from a cup of coffee... I so need to kick the habit :(  I can go a couple of days and then I start to feel better and then go back to it only to feel crappy again.  Thanks for sharing everyone it gives me a lot of motivation.

[tulakmato]

ATB is for antibiotics indeed. We have to distinguish between allergy and hypersensitivity, which is not the same. Some of you have allergy and some perhaps a kind of hypersensitivity/intolerance. To me, it seems like after an overstimulation of a autonomic nervous system there is a sudden reset in the way how our body reacts to adrenergic stimuli. Therefore some of us mention infection, stress . . . Comment from matt787 is very interesting. There might be somethig in that. Sadly, I am not a kind of doctor dealing directly with this kind of problem, so it is the same for me just like for you. After being investigated a said I am OK, I have to deal with the problem myself.

[icepepper]

So I read a little bit about the enzyme that you mentioned Stephs.  There is a family of enzymes called P450's, and ciproflaxin is an inhibitor for the one called CYP1A2.  On this website:
http://www.pharmacytimes.com/publications/issue/2007/2007-11/2007-11-8279

It also says that Ethinyl Estradiol is an inhibitor... which is the main component in oral contraceptives.  Which are something I take, and probably many of the rest of you take.  In fact over the years I have found myself going to an extremely low dose birth control pill because my body acts more favorably to it.  

I was almost certainly taking a normal dosage pill at the same time I had the ciproflaxin.  Maybe the two combined did something bad in terms of completely inhibiting this CYP1A2 enzyme (which is one of the enzymes responsible for breaking down caffeine).  Then the caffeine will more quickly build up to toxic levels.

On a different note, I accidentally took a vitamin pill that had as much caffeine as a cup of coffee the other day (it's been about a year since I've had caffeine, and then only half a soda).  I did not get the dizziness or anxiety or adrenaline rush.  I did not sleep though and was having hot flashes all night, which is what made me go back and reinspect the contents of what I ate that evening.  

At any rate, there may be some hope to ingest it in small doses if enough time has passed in between.  Although I don't think I could ever go back to having it every day.

[Zipper77]

I've had a caffeine allergy for 16 years now, starting at 17 years old. I didn't know what it was for the first four years. I had severe joint pain and would break out in hives each day.

Finally, when I realized it was caffeine, I began taking a benadryl each morning so I could still have caffeine.

When I got pregnant 11 years ago I stopped the caffeine and benadryl completely. The hives and joint pain were gone, but instead I've struggled with extreme fatigue almost every day for years. I started drinking green tea and then progressed to coffee about 2 years ago because I could handle the fatigue anymore. The joint pain came back with a vengence and my knee swelled up with fluid.

Whenever I have caffeine from any source, I still get hives each day, and now I also get panic attacks and rapid heartbeat if I am in an enviroment that would make me nervous.

The problem is, if I don't drink something with caffeine, I am so tired I get nothing done and the whole day feels wasted. For increasing my energy without caffeine, I've tried about everything. I eat healthy with protein for breakfast everyday. I eat complex carbs and I'm not overweight. I get enough sleep and exercise. I take a good multivitamin. I really just need caffeine to stay awake and be productive in the daytime and I don't know what to do since I can't have caffeine. It's very frustrating.

[Chick7423]

I have suffered two episodes within the last month and had to go to the emergency room for the first one and my symptoms include racing pulse my blood pressure shoots up extreme anxiety diarreah (diarrhea) lightheaded and then I get the shakes bits it's more like convulsing because it's worse then just the normal shakes. The first time this happened I had started a z-pack and thought I was having a allergic reaction but a few weeks later it happened again and the only thing that was the same was I had coffee tea and chocolate within the same day and that evening it hits me. And it's the most horrible feeling and it seems like once I get in that state it's hard for me to get back to normal i don't feel back to normal for almost a week. I went to my dr who prescribed me Zoloft blood pressure meds and clonopen as needed but the blood pressure meds made my Bp to low because after the episode passes my bp returns to normal. It's comforting to know that I'm not alone in this.

[mrscadur]

I have ALL the same symptoms as you and everyone acts like I don't know what I'm talking about or they think I'm over exaggerating. Have you found any answers? I too have been a coffee drinker for years and "bam!" out of no where they started happening. Well I hardly drink caffeine now but at times I have a cup or some soda, seems like it messes with my mind and even feel that my memory is getting bad now.

[wenweb]

Hi.  I've read many of the posts here and it's nice to know I'm not the only one with this weird, out of know where problem.  It seems most of the posts here are from women.  I am 32 and just started having episodes in March of this year.  Out of know where I had what I thought  was a heart attack one morning after drinking only half of a cup of decaf coffee.  I wasn't stressed, just relaxing on my couch watching TV.  I went to the ER and they checked me out.  They couldn't find anything and told me to follow up with my doctor and avoid caffeine.  I've been to many doctors since and have cut out caffeine, but no answers on why the sudden caffeine intolerance.  I will say though, I have Hashimoto's thyroiditis, low Vitamin D, and mitral valve prolapse (MVP).  My cardio said in fact that MVP is common and I could still have caffeine.  So I had a little decaf off and on and still got palpitations.  I'd also feel like I would be in a hypoglycemic state, extremely weak, like I'd pass out, so I'd eat protein and lie down for 20 mins. or so and feel better.  
I've done a lot of research and I'm wondering if there are underlying causes that make us all so intolerant of caffeine all of a sudden.  I wonder if there's any connection between liver function and estrogen dominance that is causing this.  Your liver is where caffeine and many other substances and hormones are metaboloized.  So if your liver is not functioning effectively, I would think that toxins would build up in the liver, metabolize much slower and make you more sensitive to foods, chemicals, etc.  Also, I read that caffeine increases estrogen in the body and interferes with the liver's ability to metabolize estrogen, which can cause the body to have too much estrogen.  In addition, the adrenal glands indirectly produce progesterone which counteracts the effects of estrogen.  When caffeine is consumed in excess, that burdens the adrenals which can in turn lower progesterone levels.  The combination of this Estrogen Dominance and impaired liver function may very well be contributing to caffeine sensitivity/intolerance.  Does anyone else have low Vitamin D and/or endocrine or autoimmune diseases here that is experiencing this caffeine intolerance?

[Smithy1185]

I was a big ice tea drinker, woke up April 13, 2011 and had all the same symptoms have not had any caffeine since May 1, 2011 and I feel great.  I hae spent probably hundreds of hours trying to research why overnight i cannot tolerate caffeine and came up with nothing.  I went to 8 doctors had countless blood tests, cat scan, any other tests and all doctors said your fine come back in 6 months and don't have any caffeine.   One doctor did find a stomach polyup and removed it and a esophgus ulcer which is now healed.
I was also under alot of stress at the time.

I would rather never have caffeine again than experience for a moment how bad I felt back then.  I felt like I was dying for 4 months before I felt better in July 2011, even after stopping caffeine about 2 weeks after I started feeling bad in April 2011.  It took about two weeks to figure anything with caffeine would make me feel extremely bad.

[coolestmasiulis]

Ohhh I am sooo glad to have found this community!  I am a 31 y/o female and I just started having this intolerance within the past few years.  Like many of you coffee didn't used to have this affect on me --  but now even a half of a cup can make me feel like I'm having a heart attack.  Mine seems to be triggered when I am extremely tired and/or hungover, which usually leads me to think I need a coffee pick me up.  Its weird because when I am awake, the coffee doesn't bother me, its after I go to sleep. I just had an episode this past Sunday.  I went to bed at 10pm, woke up at midnight with my heart racing.  Dizziness, muscle fatigue, panic attack, hyperventilation, diarrhea, fever sweats... I feel like I'm on the verge of death!  The past few times I have taken a 0.5 mg of Xanax and it seems to help me fall back asleep and when I wake in the morning all seems to be fine.  I take no other medications (other than the Xanax on only a need basis, probably every few months) and I am completely healthy with no underlying health issues.  I am prone to anxiety and I feel like this could definitely be related to the coffee issue, although, the night-time coffee episodes are worse than any panic attack I've ever experienced. I drink green tea every morning, which obviously has caffeine in it, and if I drink green tea at night with dinner or something it doesn't have an affect on me either.  Neither do sodas.  Just coffee.

I wish there was more information or insight I could provide because these episodes are nightmarish... and again, out of the blue!  I feel for all of you!  Stay away from coffee and talk to your doctor about Xanax.  Good luck, I feel for all of you and I hope for some more insight.  

[ameden]

First off in general I am glad I am reading this post, sometimes I am thinking I am going crazy too. I know this post is old but I too am experiencing some weird things as well that are driving me crazy. Everything started about a year ago for me which all I can relate to at the time or at least what I think started everything was coffee.

I used to drink coffee (about a pot to a pot and a half everyday). Before that I used to drink diet Pepsi (about 30 cans a day, YES I said 30 cans) but I quit that years ago. I suffered with my weight all my life and lost a ton of weight and no longer drink soda now for years. Even though once in a while Ill squeeze one in here and there its pretty much gone. Anyways about a year ago I started experience a weird symptom when I drank coffee. I would start too feel which I can only describe as a tightness in my lower esophagus, near the bottom part of my throat. That would happen gradually and get worse. Then one night I was laying in bed and my right arm started to tingle, freaked the crap out of me. Then my left arm that night started to tingle and it tingled/numbness for months after that. I continued to drink coffee. Along with that my heart would feel tight which of course freaked me out. I had multiple EKG's, Blood work labs and CAT scans and everything came back negative. After all that I just ignored my symptoms even though they were driving me crazy. Then about a few weeks ago I started to feel like I was getting itching/pain in my veins  It seems to follow a vein of some sort and I was getting abdominal pain. Now I think "maybe" I have an ulcer issue and that could be the problem. Who knows, I have a Dr. appointment next week to rule out the ulcer (or maybe that's what it is). Even now as I type this I have a slight tightness in my chest near my heart. I'm not freaked out because I am used to it.

Concerning what Fulci said I felt I needed to respond to you which also makes me wonder and I am going to research, but you mention the weird feelings you have when you sleep. Like your body falls asleep before your mind does. Let me tell you that this has happened to me my entire life every night including when I was a young child, but it wasn't until I was 18 when I finally figured out what it was. It sounds like you have something called "Paralyzed Sleep" or "Sleep paralysis" Google it and it will blow your mind. It's a form a narcolepsy. Its basically when your body falls asleep before your mind does. Do research to find out if that's what you have.

I find it fascinating that this was mentioned with this topic since its what I have. According to research those who suffer from this or narcolepsy it is known that over stimulates can make conditions worse. I wonder if there is a correlation to narcolepsy and caffeine. Anyways I could go on forever, but I would have loved if someone told me what I had a long time before I found out. So I hope that helps.

[caffeine_allergy]

I have the same problem! When I drink caffeine, my heart races, my skin crawls, I start to feel really drunk, I throw up and I have diharrea. It feels like my skin is literally crawling all over my body and I feel like I want to jump out of my skin. Also, if I drink a lot of caffeine (like an energy drink) I black out. Its like my eyes go into tunnel vision, everything goes completely dark, and then I faint.I can still hear everyone around me, but I can't see or control my body. I'm only out for a few seconds and then I usually stand up and vomit immediatly. I have also hallucinated because of an energy drink.

Like you guys, I haven't always had this issue with caffeine. It seemed to hit me around age 21. It occured around the same time that I started taking birth control and a presription for acid reflux. I don't know which one triggered the allergy, but I think it was probably one of those. I am no longer on any medication, but I still have severe reactions to caffeine. This morning, I ordered decaff coffee (for the first time in years) and I am not convinced that it was decaff because I am having these same symptoms. Pretty much, my entire day is ruined! I will end up lying in bed alone all day because I am too drunk feeling and sick to go have fun with everyone on Thanksgiving and I definitely can't even think about eating anything because the thought makes me vomit :( I would love to hear an opinion from a doctor who doesn't brush this all under the rug or think that I am crazy.

[Mazzarino]

Hi everybody,
i'm in trouble since 7 months, not only with caffeine, but also with DECA, tea and probably with chocolate too.
I discover it -out of the blue- "thanks" to panik attack, which are very close to what is probably "hell".
MD doesn't seems to have an answer so we better protect our-self by avoiding most of these very "common" substances..
Good luck everybody,
Sal. (italy)

[deanna20]

OMG! Me too... I am 20 years old, and I have been drinking coffee since I was 12.. at high amounts.. all of a sudden out of the blue, every time I have it,  my heart rate gets dangerously high, I feel like Im going to pass out, I get weird aches throughout my body, a lump in my throat that feels like when you swallow too much french frie at once, both of my hands tingle on the left side, and I panic and think im having a heart attack.. damn, I wish someone could really explain it!

[felixthehat]

Hi Kelly,

I suddenly became unable to have caffeine in 2008. Even a half cup of tea causes the same symptoms in me - my hands and face tingle, I feel like I need to go to a hospital for hours. After the initial reaction I am so tired I feel like I could die. I have gone to the hospital a couple times thinking it was a heart problem but all tests were negative. I'm becoming more and more fatigued as the years go by. I also get very fatigued when I take depression medication - doctors keep telling me it's depression, but I don't think it is. A friend of mine in med school recently suggested caffeine intolerance is a classic symptom of chronic fatigue syndrome, or could point to an auto-immune disorder. I hope you can find a rheumatologist to check you out. You are much too young to have to feel like this, and it only gets worse if you don't address it.

Best of luck.

[felixthehat]

Hi Kelly,

I suddenly became unable to have caffeine in 2008. Even a half cup of tea causes the same symptoms in me - my hands and face tingle, my heart starts pounding - not exactly that much faster but much harder - high blood pressure is the reason, I think. I feel like I need to go to a hospital for hours. After the initial reaction I am so tired I feel like I could die. I have gone to the hospital a couple times thinking it was a heart problem but all tests were negative. I'm becoming more and more fatigued as the years go by. I also get very fatigued when I take depression medication - doctors keep telling me it's depression, but I don't think it is. A friend of mine in med school recently suggested caffeine intolerance is a classic symptom of chronic fatigue syndrome, or could point to an auto-immune disorder. I hope you can find a rheumatologist to check you out. You are much too young to have to feel like this, and it only gets worse if you don't address it.

Best of luck.

[danguy]

I have a very similar problem, but the reaction didn't start until I had an apendectomy, which was shortly after I stopped my low carb diet. Up until then I could drink 10 cups a day without problem and eat 3 or more loaded plates of spaghetti. Yesterday I had a Tim Horton's Coffee, which is my usual Sunday ritual, at about 3:30 and some macaroni at 6:30. By 9:30pm I couldn't sleep. I felt like I had overdosed on caffeine. The chief complaints being jaw pain, chest pain ( down the center of my ribs) inability to get a "Good" breath (while I don't feel short of breathe per se, I do feel like every breath I take is only about 1/2 of what I need) and though my heart rate stays normal, it is pounding like my heart is ready to explode. My chest pains are almost completely muscular, but I have had some relief recently by seeing a chiropractor, and I have been to the hospital 2 or 3 times now with what was sure was a heart-attack. While this has been getting more and more frequent, I hadn't made the connection to coffe until yesterday. So today begins the rest of my life without coffee, and if that doesn't work the next step will be removing wheat from my diet.

[JJen17S]

I don't want to sound repeatative, but this was happening to me recently as well, but I learned to cut caffeine out a yr ago. The bigger question for me is I am tired and weak all the time. Does anyone have suggestions on natural forms of energy that have been effective, because anti-depressants such as wellbutrin and prozac have the same effects on me as caffeine does which I also cut out. (even headache medicine). Any suggestions would greatly help!

[YeagleJeff]

I quit drinking. I quit smoking. it is hard to quit caffeine. coffee was just very important when doing school work as energy drinks for working out. I think it might be heart related, because I like to run, but for a while my run time was getting worse and worse. I quit smoking and drinking. i figured the combination of cigarettes, alcohol, and caffeine i consumed per day was the reason for the panic attacks (probably didn't help). I figured quiting 2 would solve the problem. I could just work more to avoid drinking and smoking. coffee is what i use when i work and energy drinks when i work out.
For me it feels like a heart problem but it could be different.
It first happened at work and hit me like i was having a heart attack.
I can't think straight
I start to hate people (more).
My stress gets worse.
I have read that being too stimulated can make you ineffective. That stress and caffeine can push you over. For example a little coffee and a little stress can make you more effective but too much can make you ineffective.
I think it might be a little more than stress though