Angiodema?? (swollen tongue, lips)

[momtocole]

Hi, I'm new here. Just about 2 months ago I began developing strange allergic reactions. They have occurred on my feet, hands, back of knee, upper thigh, lip and now tongue. I have gone to the doctor before and they said it was contact dermatitis. I have not figured out what I'm allergic to yet and am still waiting for a call back from the allergy department. Last night, I woke up at about 3am with a swollen tongue. It really freaked me out. I took 2 Benadryls and thankfully it went down almost back to normal within a couple of hours. When it happened on my lip, it swelled to the size of a grape and the Benadryl took FOREVER to kick in.

Anyway, I went to the doctor this morning and she said swelling like this (tongue, lips) is called angiodema. She said if I continue to expose myself to this allergen (whatever it may be) the next stage could be anaphylaxis.

I'm really scared. I have 2 little kids and I'm terrified of something happening. I can't avoid the allergen if I don't know what it is.:(

Please help.

Thanks,
Becky

[AllergyWoes]

For a little over a year now, I'm 55-y-o female, I have had swelling of face, lip, and now (I think) bug bites swelling (thigh, wrists, shoulder, part of hand).  I think from mosquitos, but not sure.  Anyway, I have food allergies, preservatives, and other airborne allergies.  My first swelling episode was from putting a tsp. of cinnamon in my protein shake.  I had a severe face and lip swelling episode.  I've had about 20 episodes now.  Since then, I learned about histamine intolerance, and when I follow a strict low histamine diet, it helps.  Here's a link for some information:  http://naturimedica.com/histamine-intolerance-causes-treatment/
You should research Histamine Intolerance".  Avoiding meat leftovers, avoiding sausage, bacon, lunch meat seems to have helped me a lot, and avoiding certain preservatives.  DON'T EAT LEFTOVER FOODS, freeze extra food right away.  It seems like eating fresh food (no seafood) and fresh veggies is my best bet.  Now I'm being treated for an imbalance in the gut with Nystatin Powder and probiotics.  A pharmacist just told me she thinks I need 50 billions a day of probiotics for a month or. She said when she sees a lot of random swelling she thinks its from a gut imbalance.  I'm going to work up to the 50 billion, and try it for a month or so.  My allergy nurse said it would not hurt anything to take it.  About 25 years ago I was treated for a yeast overgrowth in my gut, (I think caused by antibiotics) and after a few years of treatment from my allergist, I did recover.  So, I'm trying to be patient and do what the doctor says (diet wise, avoid my allergy foods) and take the Nystatin (yeast killer) and the probiotics.  This swelling problem is pretty discouraging, and you don't think anyone else has the problem, but I see here that a lot of people do.  I am on allergy shots again too.
Now, when I first feel something starting to swell, I take 2 Benadryl right away (every 4 hours or so), and sometimes drink coffee, and a lot of water, and I try and move around a little, I don't lay in bed or just sit on the couch.  Today I starting reading about leaky gut, I don't know if that could be it not.  I hope this helps somebody.

[8urlunch]

I have exactly the same symptoms as many of you do--unexpected swelling one half of the tongue, lips and some time the face, knots on the feet and lumps all randomly occurring.  I am not allergic to anything but angioedema occurs when I eat certain foods and usually occurs at night while I am in the horizontal position.  Been to many doctors, no avail.  My allergist instructed me to take one Zyrtec and one Zantac daily to prevent the idiopathic angioedema. I have not done as instructed but when I feel the tingle, I take them both and this has helped minimize the reaction.  I have been all over, including to a endocrinologist.  Everything seems to be normal but she did fined that I was low in Cortisol, B 12 and DHEA-S hormones that relate to stress fight or flight.   It is related to adrenal fatigue in that the hormones are being consumed by the constant state of  adrenaline that the body cant manage.    This causes even the slightest stressed like mild allergic stimulants to randomly cause the reaction of tongue swelling, knots on bottom of the feet, genital swelling, and hand swelling.  In summary, we can only treat the symptoms unless we remove the stress that causes us to be in a constant state of flight or fight Adreniline Rush.  Would recommend Zyrtec and Zantac when you feel an episode coming on.  It should help.  Would also recommend taking supplements of B12 and probiotics.  

[Be_swell_not_swollen]

I believe that I have had Angiodema all of my life (I am now 59). For the most part mine is set off by physical (not phycological) pressure or trauma.  For example, standing on a ladder will make my feet swell. Getting my lip bumped or sleeping too long with my lips presses against my pillow will cause swelling. Tapping my palms somewhat hard to close a can of paint or such will make my palms swell. Sitting on a hard chair (especially where the seam of my briefs are) will cause very localized swelling on my buttocks where the seam was. Etc. etc. Sometimes the swelling seems random. The most annoying is the swelling of the uvula. (Gag me!). This is sometimes a reaction to Listerine or the like. Obviously I rarely use such products. Swelling of the tongue is also quite annoying because it obviously make speaking and swallowing a challenge. Usually this occurred to one side or the other but once hit both sides simultaneously. Once my salivary glands swelled!  What is interesting to me is that I tend to be more sensitive  during certain time periods, often autumn but not limited to then. The sensitivity periods may last for months. After the period I tend to be less sensitive. Taking Allegra or a generic always has helped. My doctor tells me that I can take this profalacticlly but I do not like that idea.  My doctor provides me with an EpiPen or equivalent in case my breathing passages would swell. Fortunately this has not occurred. Mostly it is weird and an annoyance. Sometimes it interferes with my daily routine, mostly not. Blessings.

[moxie211]

I too have been having large welts and swelling over whole body, I have Myasthenia Gravis and have wondered about immune system also. I can be home, away, summer, winter just comes and goes randomly but always overnight or when I active for long periods of time ie just laying in bed. Have wondered if it's to do with circulation and immunity?

[TB1269]

Hello to all.
I too have experienced chronic Angioedema and Urticaria for 5 years after having a very bad reaction to a suspicious milk shake.  I have seen 4 doctors who could do nothing more than prescribe medication and really had no clue on how to treat the root problem.  I lost all confidence in them.  The medications were taking their toll on my and I was still having outbreaks and decided to take control of the problem and heal myself.

I went on a 40+-day juice fast juicing raw greens and vegetables and have greatly eliminated most of the Angio and Urticaria and rarely take a antihistamine for an occasional attack, and the attacks are minor and often the juicing stops the attack and clears up the swelling and rashes.  Amazing!.  I juice everyday and feel like a new person.

I haven't cured this autoimmune disorder completely, but will figure it out eventually, because I think I'm on the right track.

For those who are suffering and have not had luck with your doctors, please do some research about this and really look into it.  It works!!

[deb04072]

I'm 64, female, and have dealt with lip, cheek and tongue swelling for 15 years.  Went through allergy and blood tests at start, beta-blockers and ACE inhibitors back then.  Nada.  Go home and know there is nothing we can do.  

Adrenaline has been a trigger, but not as predictable nowadays.  Used to be I'd be under a burst of stress, and that night as I slept, my jaw and lip (left side) would swell.  Goes away by about noon.  In the beginning (divorce is very stressful) it was the full-fledged ER visits with tongue and throat (one side) involved.  Over the years it has been basically the lip and cheek, all starting at night.

So glad to find this community.  I have tried to stay away from any medication (being basically healthy, otherwise) but agreed to try a mild diuretic for my creeping blood pressure, and a hope that it would help with the swellings.  It helped the cycle of anxiety triggering blood pressure triggering anxiety a lot.  Pulled off two days ago.  Will revisit it with my primary care guy.

This condition has just been part of my life that has been an annoyance, but when I feel I need to sit outside an ER at midnight waiting to see if my throat will start closing (two nights ago) - it is time to start trying something. I don't have a background or history of allergies, but had a grandparent with RA and my mom had hives, so there may be some predisposition there.  And I have blood markers for lupus - so there is the autoimmune possibility.

I will watch posts with interest.  

[pedmund]

6/13/15 my 83 yr old woke up with swollen tongue and face. Been to ER every other day since and no one can finger out why. they thought it was hereditary angioedema, but ruled that out. He is in hospital as we speak. been to ER every day this past weekend. : ( very irritated. I had to beg him to stay in hospital for observation to try to figure out cause. They say it's not compromising airway though.

[rootb]

Last spring I began to have many of the same symptoms as many on these posts. Went to many doctors and allergists. To cut to the chase, everyone having these symptoms should be tested for Alpha Gal. This is a allergy to all mammal meat and by-products, caused by being bitten by the loan star tic. It is hard to identify because the symptoms come on multiple hours and even up to a day after eat mammal product. Your doctor will be able to diagnose with a simple blood test. It is tough to avoid all mammal by-products because it is hidden in so many foods such as over the counter breads that have meat conditioners added to keep bread fresh.

[RayHutch]

Hi, my name is Ray, I'm 62 years old and your symptoms seem very similar to mine. I started swelling in various body parts last November 2014. The swellings occur in my feet, wrists, lips, jaw, one side of my tongue once only thankfully, and usually last for about 24 hours. I was getting the swellings on a daily basis. I went to two doctors who were about as helpful as the proverbial, so I went to a Chiropractor / nutritionist who gave me some "Curcumin" tablets under the brand name of 'Pure Innovation". From the first day I took one capsule the swellings stopped. I took them for a week with no swellings at all, then stopped for one day at which time the swellings immediately returned so I took a capsule and the swelling abated fairly quickly. I then went for 3 weeks taking oner tablet daily and no more swelling. Then I fogot to take one tablet and about 0100hrs I started to swell. I took another tablet the following morning and the swelling again abated fairly quickly. Since then I have been taking one capsule each day and have had no more swellings. "Curcumin' is a natural product derived from the Indian herb Tumeric, and at a cost of $10 per week, it has been a god send to me. I'm replying in the hope that it may be of some assistance to you.

[mitchymitch]

Hello folks. I have also been suffering from similar symptoms. I'm a 45 year old guy from Minnesota, USA. Back in October 2014 I awoke to a very swollen right foot (inside the arch on bottom). I had NEVER had anything like this before.. it was alarming. It itched like crazy and went away after about 24 hours. Since then I have been getting the swollen tongue(only one half at first). I have also had the awesome experience of the swollen lower lip.. looks lie mumps (so embarrassing). I have had large hard itchy "wheals" on my butt cheeks.. right where my butt touches the chair while sitting. These all happen while sleeping. I have never had two areas of swelling at the same time thankfully. They all go away after about 24 hours. Ice does not help.. perhaps made my tongue worse one time. I have not been to a Doctor yet. I was excited about finding this forum because there is not too much on the net about this. This was all happening  in the last 4 months. I hate it. I have had the swollen lower lip about 3 times.. the tongue maybe 12 times. I got rid of all my soaps and got a new mattress and linen. I made a journal of all the "allergic reactions" and what may have triggered them. I thought briefly it was a nut allergy (still might be). I have never been allergic to anything. I had about 2-3 weeks without any reactions but a few days ago it started up again. I had 2 different acid-reflux episodes also in the last month. I have researched Acidosis, Amyloidosis, Hives, Allergies.. It seems like I have ALL these at once. I have a cat that goes outside occasionally and he is on my bed often. I thought maybe it was a tick related thing. I DO drink a LOT of soda, too much. I suspect that my PH level is way off and it may be ph/acid related. I also have some old lead fillings and I have a tooth that is pretty cracked up and should be pulled. Maybe it's the soda,  the nuts, or the dental stuff. I had surgery a few years back on my elbow and have a lot of metal in my elbow, Strangely, the only other time in my life I have had hives was immediately following my elbow surgery. I had INSANE wheals on my inner arm that looked just like 2 inch mosquito bites. The post surgery hives went away after about 6 months. I don't know what to do. I can't go out in public when my lips or tongue are all inflated and puffy. I would say 80 percent of my reactions have been on my lips or tongue. As I type this.. the right side of my tongue is swollen. I have always been a pretty stressed out guy but I have a hard time thinking it's stress related.
I hate this. There is a history of Lupus on my Moms side. I'm hoping maybe this helps somebody..

[darlena11]

Ours are called epi-pens here in the U.S. I have to carry one.

[leighrenee]

I too have swollen tongue. I have been diagnosed with grass allergies, and we live in fla so something is pollinating all year. the allergist that did the tests gave me an antihistamine that did nothing. so I am anxious to try some benedryl. I am also a nutritionist and yes changing your diet will help. no dairy, meat, processed foods and salt as that makes the swelling worse.
my new MD said I have acid reflux and I have not heard that can cause my allergic symptoms.........it is awful as I have a hard time eating and speaking..............ice chips on my tongue feel good but as soon as I stop the swollen tongue is still there
thank you.

[Brooke777]

I know it's years later, but was doing a web search for angio-edema and found this thread. Re that bite on your leg, you may know this by now, but if it was a TICK, you may have what's called "alpha-gal" allergy.. You may want to google it, but summing up, one would experience angio-edema upon eating pork, beef or lamb, and typically it's a delayed reaction, happening 3-8 hrs after consumption. The body is reacting to the same "sugar" that was caused by the tick bite, and is the same sugar that's in red meat.  

[Freedom1980]

Hi April!

Thank you for your story.  I have been suffering with this problem forabout 10 months and am desperate for some relief!  Would please tell me the name of the juice that helped you and where you bought it?  I appreciate your time and help in this matter.

Thank you,
Connie

[mrblobby0]

forgot to say I think the attacks happen to most people during the early hours because thats when the body is in deep sleep and the inmmune system is not functioning as it would during waking hours.
A common factor having read and spoke to people is this can occur during periods of stress which i can relate to also been told that excessive exersize can also cause it , I used to train 6-7 days per week when it first occured but that isnt the case now so who knows
Its good to know there are other people to speak to with same issues.

Bryan United kingdom

[mrblobby0]

I have suffered with swollen tongue and face it seemed to move sides from attack to attack. mine seemed to start 2 years ago out of the blue, had every blood test they could think of and all found negative the specialist wouldnt perform allergy tests as she said it is very common and not an allergy. I also had tests for I think the nane is elicta bacta a bacteria most people have present in the gut ,it doesnt affect most people but if the gut is irratated it can cause a reaction which can cause swelling to occur. That proved negative I have had 2 episodes in the last 3 weeks girst my tongue on the right side then last saturday my right hand swelled to twice the size it should be took predisilone and piriton after an hour it subsided also chest pain as though i couldnt digest food or drink. these seem to be common symptoms. mine usualy starts with sore tongue as though I have bit it followed by swelling. most attacks in people happen in the early hours it would seem the body produces histomine to fight an allergy that isnt there ,I am told the over production of histomine is what causes the swelling hance taking the anti histomine. I would advise anyone experiencing tongue swelling if frightened to call emergency services /ambulance as it can be fatal if it spreads to the throat. better to be sent home from emergency unit with medication than being a fatality.
Bryan United Kingdom

[Lezpye]

Hello Susan, my experience appears identical to yours and started about 8 years ago when I was 49. I have given up wheat products 18 mths ago and didn't experience any problems until about 3 wks ago and now it's a slightly swollen lip most mornings and a few hives on my legs below the knees, nowhere near as severe as before.  Please keep me posted if you get any new news, cheers, Les

[Pinxie]

Hi :) Ive been having this horrible horrible swelling happen to my tongue sibce a few weeks ago. I have never had this happen before so i was really scared and I dont have any allergies. Well, not that I know of.

I was sick with the flu and i couldnt keep my food down so my doctor gave me clopaman tablets, he told me not to have any dairy products with. I forgot and had cereal on a friday monday after i had taken the becos i had to take it and hour before.
My tongue soon started swelling and it became difficult for me to breath nor talk, my words were slurred. my muscle kept spasn like i was having a seizure and my neck muscle were also making me jus look up.
At the hospital they gave me lots of injections of things i dont know. And it came down. They gave me allegex. Thats what we call it in south africa. I went home and the swelling started at night time. I toom two allegexs pills but it wouldnt come down because im not having alllergy reaction because im not allergic to anything, its just the clopaman and milk that triggered this.

We went back to the hospital and i was admitted. They told me it was jus an allergic reaction and never to take clopaman again.  During my whole stay my tongue never came down to its despise all the allergex and other things they gave me. I went home home sunday with again allergex and some prednisone to take in the morning. It helped a little bit but it had not fully come down to its normal size. Tuesday evening, it started swelling again. My tongue was getting thicker and thicker by the hour. It was rising. At about 2amin the morning i could not take it any longer, my throat was also hurting now and i felt like i was going to swollow my tongue or it was going to suffocate me. I had not slept a wink and my parents thought i was being paranoid. But we called the ambulance because we had tryed everything,  allegex, gaggling my mouth with salt water and rubbing my tongue with ice cubes.

The paramedics came and saw it was rising. They said it was anaphylaxis and took me to the hospital. I was admitted again and diagnosed with something ngitis at the end. I was given lots of medicine and injection. My blod pressure was low though. but my tongue just kept on swelling. I went to go see a specialist at the hospital and he put a. Camera down my nose and told he thinks its and infection in my throught but i will go to theater and have them put a camera down my throat. at night it became unbearable my tongue still had not come down since i got there.

The next day i went to theater,  came back and was told i will be discharged the day. I went home with pariet. The tablets were working and my tongue came down even down it still felt a little too big for my mouth it was a jus a little longer and wider. On wednesday night it started swelling again. I was panicking,  we phoned my doctor aunt and asked her what to do. She said i should take perdnisone bout 4 Tablets but they should have given me injection in case of sitiations like this and a list of things i shouldnt eat becos i must i have an unkown allergy. I took the 4pills of prednisone and it soon was manageable becos then the tip of my tongue was touching the roof of my mouth and it was wider and longer. If i put my tongue behind my teeth where its supposed to be it felt like i was going to swallow it and the front of my tongue now had the shape of my mouth as if it was being forced into that possition. I id not sleep a wink becos i was scared of suffocating to death in my sleep as my aunt said it would happen if i didnt do anything bout it.

So please help me u guys! :( Im only 15 by the way

[angelin7]

I started off with a swollen lip on  right side bottom then right side top then for the past 6 months I have had a very swollen tongue on the left hand side 3 times now.  Doctor says its an allergic reaction, but im not so sure, seeing as the last time I had it, I had an upset stomach so hadn't eaten.  Going tosee an allergy specialist in Sept but by the looks of this forum I will be asking for a thyroid check, as every time it happens im really tired and it always happens in the middle of the night.  Good luck to all of you, but looks like there no hope for any of us..........

[Nebraskan]

I am 58 and have idiopathic angioedema.  It started 3 years ago in the middle of a summer afternoon with my lips swelling.  I thought it was something I ate but soon found out that it wasn't.  I started having random attacks.  They could start anytime of the day or night and it wasn't related to anything I ate.  Sometimes I wouldn't eat anything & the swelling would start.  Often it would start in the middle of the night.  My lips, cheeks, neck, feet, finger tips would swell so bad I didn't want to be around people because it looked so bad.  Often the swelling would start with one side of my cheek and travel to my upper lip, the other cheek and to my lower lip.  It was so frustrating because I couldn't plan anything and often missed work.  I went to an allergist that subscribed Allegra, Zrytec and Zantec.  This helped somewhat but I was still having attacks.  I kept a calendar of my swellings and their severity.  My January 2013 calendar was filled with swellings.  Finally I changed allergists.  She had me go off everything for 5 days.  I was an itchy, swollen mess when I went into her office.  She did a couple blood tests to make sure it wasn't hereditary.  Luckily it wasn't.  I went back on Allegra (180 mg) 1 in the morning & 1 at night, plus Zantec (300 mg) 1 at night and Singular (10 mg) 1 in the morning.  The Singular with the Allegra and Zantec has changed my life.  Since January 30, 2013 (the day I started with the new medication) I have had only 1 minor swelling.  The combination of meds WITH the Singular is the difference.  That's ALL of Feb, March, April, May (except the 1 minor swelling) with no attacks.  I believe the 1 incident was because of stress.  I was working 12 hour days that week to meet a deadline.  I can finally make plans for the weekend!  I had 3 long, very frustrating years with idiopathic angioedema.  I'm hoping the success continues.  I am sharing this because I hope that it will help you too.  It is worth a try.  I used to read all these posts and was desperate for an answer.  

Omaha, NE

[RE13]

I started having angioedema face and lip attacks 5 months ago. I immediately went to an allergist, who wanted to give me an immune suppressant drug and after having tested me negative for Hereditary Angioedema, refused to give me food allergy tests to pinpoint what was going on. Two months later, I went to an excellent Naturopath who prescribed 1,000 mg twice a day of powdered Quervitin, I've been taking it for about 4 weeks and have been feeling great! I did have a minor swelling last week, but it was slight enough that only I could tell it was there. I'm no l no longer need to take Benedryl before bed. On addition, my doctor ordered allergy blood tests to check for delayed reaction allergies. Sure enough, I have them! I am already Celiac and have been gluten free for 7 years. I will meet my doctor next week and will discuss eliminating my delayed reaction foods (dairy, eggs, almonds) with the hope of reintroducing them successfully in the future. Don't lose heart people, in figuring out what is causing your angioedema. For me, Quercitin has been almost an immediate way to drastically reduce my swellings and hopefully, diet changes will eliminate it,

[Edmond23]

Every 4 weeks give or take a couple of days, my husbands tongue -left side only -swells and is red and inflamed looking. Painful and the left cheek is numb for a while. Went to the emergency room and he said, I see this all the time and it's the blood pressure medicine. So he went to his doc and went off of it for 4 weeks. Anyway, it didn't help and he has had 4 more attacks. He will take antihistamine then it goes away until the next month.

Had 2 MRI's and found nothing. Had a tongue biopsy-very painful-wouldn't recommend it to any one- found nothing. Cannot associate it to any food and the doctors do not know.

Will go off of the aspirin for a while and see what happens. I guess it's the process of elimination, trial and error.

Anyone with suggestions, please let us know.
We'll keep searching and I think the next thing is to not take any aspirin for the next month.

[Verchen]

Hi all,

Just started some lip swelling last week on a trip to FL.  Thought it must be something related to the floral and fauna there, but it has just happened 2 days in a row back home.  I don't have anything as severe (yet) as most of you on this site and my recent episode started with sinus pressure all day and then some slight lip and eye swelling that night, no swelling the next day but a severe sore throat and today no sore throat and a little spot of swelling on my lip.  Calling doc tomorrow to start my journey.

I can't help noticing that some of you don't have the symptoms when pregnant.  That suggests some kind of hormone thing is going on, don't you think? Maybe taking birth control pills (they make you think you're pregnant) will help?  

[Sharko]

I'm 29 years old, never had anything more than seasonal allergies. Just had a baby 4 mos ago and was breastfeeding. 2 weeks ago after eating a piece of Hake (white fish) had an anaphylactic reaction - received 2 shots of epipen in ambulance and was hospitalized for 2 nights. Stayed on prednisone, zyrtec, and pepcid for 1 week and 3 days. That last day, I decided to see what would happen if I stopped the zyrtec - immediately starting getting early symptoms of anaphylaxis - stomach cramps/diareahha, swollen tongue, throat swelling and mouth tingling. I quickly took zyrtec, 2 benadryl and 2 prednisone and was able to stop reaction - didn't need epipen this time and avoided going to the hospital. Blood work from hospital show no allergy to white fish and negative for scombroid fish toxin! I'm taking zyrtec and pepcid 2x a day but my tongue and throat is still swollen - never went down from first incident. Can't do skin tests bc I can't get off antihistamines. Anyone have answers? I don't buy the idiopathic anaphylaxis diagnosis...