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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.
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17044077 tn?1453251630
OMG I can't describe my feelings i'm just so glad that i found someone who has the same problem as me  i was so worried about that,whenever i drink coffee i feel anxious and nervous ,i feel like i'm going to die or lose my mind it's hard to describe it, it's just horrible .
for everyone who had the same experience did you go to a doctor ??
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I developed a strong caffeine intolerance just after having my second son. Sadly I enjoy coffee. Even enjoying the sniff of many friends Espresso Martinis had me nauseous, jittery and twitching all night with no sleep. I and another doctor friend discussed once how having green tea and msg in a Chinese restaurant sent me so far off the planet I had to go to a doctor and get an injection to stop me literally jumping out of my seat. Very frightening. Experience has taught me it is definitely msg and caffeine together. We had both experienced the same problem and worked it out together. Never to be repeated again!
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Hi Kelly. I am having similar problems. Even decaf teas and coffees seem to be doing it to me now.  I also have anxiety. Mine seems to have started after taking my blood pressure meds for a few years now. This horrible feeling comes over me that I can't describe like I'm going to drop dead and my blood pressure goes sky high. I'm just now starting to research if this could be what my problem is. If you find out any information on this please let me know.  
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Hi Sandy.   Could you share where you got your info on sinus meds causing these side effects.  I truly know going off Singulair has made me intolerant to caffeine , alcohol and sugar . I would appreciate any info. We're you ever on a sinus med?   Thanks.
Gabby


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To Kelly and All.........I am 26 and in the past month have been experiencing many adverse side effects from abruptly stopping Singulair after having taken it for over a year. My body seem to tolerate it ok up until the last month I was on it. I started getting heart palpitations, anxiety, fearful thoughts and severe insomnia.  I am (was) a 2-3 cup a day coffee drinker. i was the typical single 26 year old .....working a job where drinking coffee was a regular part of my day.....loved finding new coffee houses wherever my friends and I went.....enjoying nights out having wine and drinking socially. That all ended when I stopped taking Singulair.   I can't touch caffeine or alcohol without getting heart palpitations which lead to anxiety attacks.  I realized a few days after stopping that caffeine was not my friend any longer. Then I tried wine and the panic and fearful thoughts set in.   I tried to introduce both back into my diet a few weeks ago and no luck.  I knew there was a definite connection to the allergy medication and reading these posts confirms it.   I see a new allergist in a few days and am going to share what I read here on this forum. THANK YOU TO ALL THAT HAVE RESEARCHED AND TAKEN TIME TOMPOST THEIR STORIES.   I am wondering if anyone else took an allergy medicine that caused the same.    I will post again after my dr. visit.  I pray she is receptive to what I share.   I know I what labs taken for sure.
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Hey everyone, it's me again, years later. I was 22 when I received the vaccine and am now 31; I have subsequently gotten married, birthed two children, and gone through a myriad of puzzling health problems. I'd love to tell all of you that I'M CURED! TIME HAS HEALED ME! IT'S A MIRACLE! But, alas, NO, I AM NOT CURED. I've gone through multiple odd health issues, ranging from early onset arthritis, bone spurs, chronic fatigue syndrome, mononucleiosis that knocked my on my rear-end for +6 months, along with a mysterious fluid-filled cyst that's living on the base of my brain, attached to my brain stem that was an incidental finding during an MRI of my neck and spine due to my severe neck stiffness during and after the duration of mono and my recovery. GARDASIL drastically altered the course of my life; there is no mistaking that. I have not been the same since and I will probably never be the same again. I hope that anyone out there who may be going through some hard times right now reads this and knows that there are others who, too, have suffered.
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My husband drank coffee for years but a few years ago decided to switch to decaf, He is now slowly trying to switch back to coffee but is not doing well. he has headaches, anxiety, face numbness...My question is this...If he continues on coffee, will these symptoms eventually go away? Does anyone know?
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I also have different reactions to different caffeines, but I started to keep a journal of my symptoms and noticed that it wasn't just the caffeine, it's how much sleep, exercise, stress, etc...in the day.  It has a lot to do with your adrenal glands.  Read my posts about what the adrenal glands are doing and you will understand how it all works.
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I also read about infections.  High cortisol amounts are related to infections.  An infection can raise your cortisol and your cortisol can be raised and the minute it lowers it exposes you to infection.  So it works both ways.  Stress is the same way.  Have you noticed that right after a very stressful situation you tend to catch a cold of some sort?  Also, for women, have you noticed around your menstruation time either right before or after you catch a cold?  I'm not saying your adrenals are bad or not working, I'm saying that it might be more than just a caffeine allergy or intolerance.  Basically, cut caffeine, lower your stress, and try to eat healthy.  Also, if you exercise more than your body can handle (even though exercising is good for you) you will release cortisol into your bloodstream.  Basically, keep a journal of your day to day activities and find a link.  It could be caffeine, stress, exercising, infections, etc... or a combination of a few.  If you tune into your body more, you will be happier in the long run.  Let me know if anyone needs more help with this.
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I have been going through the same thing and Drs make you feel like your crazy or a hypo.  What's happening in your body has to do with your adrenal glands.  Mine started after I had my 4th baby.  What happens is your body does not metabolize the caffeine correctly.  So if you notice, you drink the caffeine in the morning, but the afternoon your symptoms will really flare up.  Once your body starts to metabolize and break down the caffeine it surges into your bloodstream, (did you notice you got really tired right before?  The caffeine "crash") then to compensate for the caffeine your adrenals release cortisol, but so much is released because of how much caffeine is now in your bloodstream that your adrenals now have to release adrenaline to counterbalance the cortisol.  So one minute you feel like your exhausted then all of a sudden you are flushed in the face, have a racing heart, your blood pressure goes up, and so on.  So the cortisol makes you "hypoglycemic" then the adrenaline comes in and gives you a panic attack.  Basically your body builds up an immunity to the substance and now your adrenals have to work overtime.  I know everyone wants there caffeine, but there are def. safer alternatives to try and I'm sorry to say, but this probably will never reverse itself.
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Wow...thanks to everyone for posting. This just happened to me.
I am a coffee aficionado so it really hurts, but there's really no choice in the matter.
It's been about two weeks and I barely miss it.
I'm choosing to think of us as superior genetic hybrids seeded by an alien race long ago. We are emerging into our True Forms. The alien race shall return to the planet soon and we will be the ones who'll be spared from being put to work in their Mines. (We will be given decent admin positions)

It gets me past realizing I'll never have chemex-brewed, single source organic Tanzanian Peaberry again


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Allergy or Sensitivity or Intolerance?

When folks discuss this as laypeople, the terms we choose may not make sense to doctors. They recognize caffeine as a drug, so it is a drug reaction we are having in their mind.  But why it comes on so suddenly to some who used to guzzle the stuff is why we think "allergy."  I use drug sensitivity or intolerance when discussing this with professionals, but I read you loud and clear.

Pharmacology uses caffeine sensitivity as a marker when studying genetics and pharma reactions.  It is real, and if your doc is ignorant, tell themn to look into the National Health studies.
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JJen,

Do you sleep well?  Many have said sleep disorders are what made them tired all the time, but ALSO consider  HYPOthyroidism. Bro is majorly, and this is why he had hair loss, exhaustion, inability to keep himself warm and something else...can't remember...Doh!
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I tried black tea instead of green for a morning start...worse than coffee, I agree!!
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Kelly,

My brother was diagnosed as caffeine intolerant by the National Institute of Health, and they made him a testing subject.  They have been observing these people and the ways they respond to other drugs with similar effects on those who are sensitive to caffeine.  They gave him a suspect erectile dysfunction drug, and that was the worst panic attack he'd ever had in his life, he so wanted to act out in an irrational rage.  Thank good he was in an MRI under a doc's supervision and not some workplace.  They didn't let him leave until he felt more stable.  Men are more likely to have this intolerance, but as a woman, I can say don't underestimate its potential to ruin your life.

Folks in pharmacology understand this issue.  It is a marker for folks likely to have unlikely reactions.   Caffeine was the drug that tipped them off to this differing sensitivity among similar patients which plays out across all similar drugs.

And now I just developed this same mind racing agitated paranoid hostile cycle over the past month, though now I look back it was creeping up on me...I have plenty to be glum about if I don't work on it, but am typically able to trudge along like a good soldier. But I simply fell to pieces with paranoid, circular thoughts that my husband wanted to quit me and his sister encouraged it.  Not so, but what does a panic stricken anxiety ridden fool think when they are losing it?  I walked my feet to blisters trying to expend the explosive anger.  

Then I realized I am likely suffering as my brother does.  It's nice to know I can do something about it.  Sure, it's a drag to have to give up caffeine, but I gave up tobacco, I can do it.

I read at another site where folks are coming to grips with caffeine anxiety that to go cold turkey can also antagonize the anxiety reaction for weeks if not make it worse, like giving up nicotine, so a withdrawl over time might be smarter, like one cup of green tea in the morning? I never want to feel so outside myself again...My poor family!!

About your HVP vaccine, having had cervical cancer, you are better off with this vaccine, but continue to have paps, sometimes the vaccine doesn't take.  I've not heard about this reaction to the vaccine and have been very observant since my mother died of cervical cancer at 40.  But I am post menopausal and this caffeine thing came out of the clear blue sky and rained all over my parade.  I don't think it's the shot, but who knows?

Thanks for being so brave as to start this discussion off...You saved my marriage, I hope.
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I have been dealing with the same issue for awhile now. I'm sure very sure when it started as I've never been a huge coffee drinker. I didn't even start drinking it occasionally until I was in my mid-20's and had 2 kids. I already had dealt with post-partum anxiety issues, so that was there before the coffee - however I was an avid diet coke drinker, going back and forth from caffeine free to full caffeine, so maybe that played a part. I was on anti-depressants for years, then came off them and had massive panic attacks and just figured it was my system adjusting from the years of anti-depressants (turns out I wasn't depressed, just married to a bleep-hole).

After my divorce, as a single parent of 4 kids, I went back to school full time and, obviously, figured I needed some coffee to make it through a day of studies (I was 34 at the time). I would have panic attacks all day, often right in class. I never connected the 2 until my mom started having the same issues. I totally cut out caffeine for several years, and things were fine. I could have coffee occasionally, but I would sometimes react, not severely though. Then once I got my degree, I went to work full time which was more stressful than school as the hours were really long and I had to get up really early (night owl here). That and co-worker pressure caused me to start drinking coffee again. My workplace has 5 coffee shops in a minute's walk and it's just a given that we all go out for a coffee twice a day. I noticed I was starting to feel dizzy, not sleeping well, having heart palpitations (I've had an EEG and it was normal, so no issues there) so I cut out the coffee and started drinking green tea. It seemed okay but I noticed the other day I had black tea and OMG it was WORSE than the coffee, by FAR. The coffee gives me a headache and heart palpitations, but the tea makes me want to crawl out of my skin. Is there a major difference between the types of caffeine in those 2 things? I've tried it several times and it's definitely the black tea that is causing issues. Also, I seem to be okay with alcohol. If I'm having a tea episode at home, I'll have a glass of wine and it'll go away instantly. So I feel like while I'm glad to have found I'm not the only one so sensitive to caffeine, I feel like I have such a different reaction to coffee vs tea and I haven't seen anyone with that same issue so I do feel like a freak or that I'm imagining things. And, again, alcohol doesn't bother me in the least (although I must state that I come from a long line of heavy drinkers that all lived into their 90's or even over 100, so maybe that's genetic).

Anyway, just thought I'd make a post to commiserate with everyone. I spent quite some time reading the whole thread and it was very interesting.
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Hi Kelly,

Had been reading about caffeine intolerance and came across this page.  I have had this problem my whole life and now in my 40's.  Sinus medicine as well does the same thing.  You might want to get a hair analysis done...you may have low functioning adrenal glands.  I found this out about myself a few years ago which will also cause you to have panic attacks.  Coffee, stress, alcohol, sugar ...etc. any stimulants wreaks havoc on adrenal glands.
Sandy
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Decaf coffee still has caffeine in it. It is a lot less than regular coffee, but I still react after a couple cups of decaf.
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A few observations after reading some of the posts here (from someone who also has a caffeine intolerance, not an allergy)

I took me YEARS to figure out (maybe accept more accurate) that my anxiety and insomnia were made worse by caffeine….any caffeine. Because I had insomnia and slept worse, I had a greater need for caffeine in the morning - what a vicious cycle that I STILL fall into on occasion. The answer for me is to avoid any and all sources of caffeine and a big part of this is knowing all forms of caffeine (and other stimulants) - it is hidden in several ingredients in our food and beverages and folks should research this and know what to avoid.

Observing several other posts, I would encourage folks to think about why they need caffeine in the first place. Usually it is not sleeping well ironically due to caffeine consumption and intolerance. But….the morning sleepiness may be due to a sleeping disorder such as sleep apnea. For me, this seems to be the case. SLeep apnea leads to morning drowsiness, which leads to caffeine intake, which leads to insomnia, which combined with sleep apnea leads to even greater am sleepiness and need for continued stimulation through caffeine. What a vicious cycle! Also, sleep deprivation can lead secondarily to daytime anxiety and depression (heard these symptoms to some degree in the posts) and then those need to be treated. In addition for me, I have Periodic Limb Movement Disorder (similar to Restless Legs Syndrome) and caffeine and Aspartame (phenylalanine) make me legs go absolutly bonkers at night.

I'm not really sure where I going with all this but I guess the bottom line is to consider the NEED for caffeine as possibly a symptom of some other medical condition (like a sleep disorder). The best I can advise is that we are not going crazy, that we have REAL issues around caffeine, that some doctors are willing to work with us (try Nurse Practitioners), but that in the end, WE are responsible and have the only control over our own healthcare.

This is and has been a tough nut to crack and I wish everyone the best in their own journeys:)

p.s. I did find an article re: possible genetic relationship to caffeine intolerance  -  http://heartcurrents.com/coffee-risk-slow-metabolizer-fast-metabolizer/
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I also have been searching for remidies to my conditions that doctors can't find or assume. i have read that it might not be the caffine itself but the pesticides that are being used over abundantly to produce more coffee and money. These affect more than the insects! Don't you just love the greed in humans for money?
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I get similar weird sensations when I drink coffee. My heart starts racing my mind feels like it's going to explode I get jittery nauseous and just feel like im going to die over all! Went to starbucks todaly ordered a decaff coffee... about an hour later the feeling kicked in... and got worse and worse. Got home 4 hours later thought id lose my mind! It finally fades off slowly. Im guessing what I got was not decaff! I did use to have anxiety in the past but I never took any medication...
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Caffeine causes me to go crazy.
I am 23 with a 15 month old child. I have never experienced this reaction to caffeine before this year! I have been drinking energy drinks for 4 years with no problem, and now for some reason there is a problem. When I drink any kind of caffeine it affects me for over 10 hours! Jittery, anxiety, fast heart rate, cant sleep, basically I feel like a crazy person!!
Anxiety runs in my family so maybe that is triggering it. I know I need to stop drinking caffeine but it has been so normal for me to drink it for 4 years... And now I can't??

I too am confused on what caused this to happen... Maybe it was from the change in my body from having a child? I don't take any medications but I have had those vaccines.
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I originally posted back in 2010.  Well, after YEARS of being tested for EVERYTHING (gastroenterologist, endocrinologist, obgyn, urologist, neurologist, and psychiatrist -- usually 2 or 3 of each) it turned out that even though I was relatively thin I had (*have) severe sleep apnea.  No snoring.  Not fat.  

Got a c-pap machine.  Can't stand the stupid thing, so I have to take ambien to sleep with it on otherwise I rip it off in my sleep.  But after 3 months of finally sleeping through the night with this thing on MY SYMPTOMS ARE GONE.  I honestly thought I was dying.  

Just for sh++s n giggles, get tested for sleep apnea!!!  I cannot believe the answer was there the whole time, but none of 17 specialists figured it out.  They all ALL said depression and anxiety.  You know who finally suggested sleep apnea?  My THIRD psychiatrist!!!!!!!!!!!!!!!!!!!!!!!!!!  

I hate doctors.  So quick to wave everything away.  Except my new psychiatrist and pulmonologist -- they saved me.

Love to all........
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hi killey , actually my problem it is not exactly the same as yours but i think the have something in common ,, i was an avid coffee drinker two years ago and like your situation suddenly i cant tolerate it any more ,  i actually told all persons i now my problem but know one could help me ,, in fact this problem made me lost my friends because of anger and depressions plus the panic attack i got ,, cuz after this sensitivity has evolved i became so strange with them and depressed all the times cuz iam addicted to it and at the same time cant tolerate it !!!
my syptoms were confusion ,, concentratin inability , not friendly and happy as before actually i got depressed more and became lonely ,,
i dont know should i cut it down or reduce the dosage or what !!?? and am happy that someone had a close problem    
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