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Hi,

My problem has been a medical mystery to my GP, ENT and any Dr. that I have seen. 2 yrs. ago, I woke up at 4 am and felt a tickle in the back of my throat. I made the mistake of gargling with Listerine. The whole left side of my tongue and throat instantly became swollen to the point that I could not really swallow. I was still able to breathe but felt like I was choking when swallowing. I went to the hospital where they gave me a shot of steroids, Benadryl and used an inhaler. After an hour or so did the swelling finally go away. It's been 2+ yrs. and I get this reaction every now and then. At first I thought it was something that I ate but my last meal was around 8:30 and my reaction was at 4am. The Dr. said if I were having any reactions, it will be within 6 hrs. so that didn't make sense. The last couple of times that it's happened, only one side of my throat swells up but not my tongue. I started thinking it might be garlic that I've developed an allergic reaction to but that's not always the case either. I'm stumped and almost scared every night going to bed in fear that I will awake to my throat completely closed up! I have done all allergy tests and know what my allergies are but it still does not explain this early morning, one sided reaction. Has anyone experienced this type of reaction? Any info. appreciated, thanks!

Susan

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By chance I read your message. This sounds very like an illness which my mother suffers from. It is called pernicious anaemia. my mother is allergic to colours and nuts and has to carry an adrenaline injection with her at all times in case she eats a nut by mistake. During the night her face and throat swell up if she eats anything she shouldn't have. She also has to get vitamin B12 injections every month to give her an energy boost as her body does not absorb this vitamin properly. You should be able to get food allergy tests done and also have your vitamin B12 levels tested. Pernicious anaemia causes severe allergies in the form of swellings and rashes and also makes one very tired because of the lavk of vitamins.
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I have something somewhat the same... back when I was in middle school I would randomly have an area of my body swell up... at first it was just something small, the side of my tongue, a part of one of my lips... then it just went away.

Two years later it came back with a vengeance. About once a week during the fall season, a part of me became swollen so badly I couldn’t even move. Sometimes it was just one part of my body at a time… my right foot would become huge, red, and slightly itchy… or my lip would swell up and become hot to the touch. Sometimes it was really bad. I have a picture from one day when every part of my lip blew up to 3 times their size, and one of my hands was completely swollen from the tips of every finger down past my wrist. Sometimes my feet would swell so badly that I couldn’t even step on them, or my tongue would swell so much that I couldn’t even close my mouth all the way, although luckily it never impaired my breathing.

No doctor that I went to knew what was wrong—one even said that “well, if you haven’t figured out what caused it yet, how am I going to?” Can you believe that? So I stopped going to the doctor, got a prescription for an epi-pen, just in case, and just let it run it’s course. Soon it did stop, maybe within 3 or 4 months, it was so long ago I don’t remember.

For the next 9 years… NINE years I maybe got swollen at the most 3 times, and they were minor, minor cases, not lasting for more than an hour. Then, suddenly, about a month ago it started again. Now it’s not once a week, it’s once a day. Sometimes multiple times each day.

Sometimes I can feel it start in one part of my foot and move across it… I know it sounds weird, but I can. Or when my tongue swelled up last weekend (and the back part of my throat, too) I could tell by the tingles that have become too familiar what part was going to swell next and when it reached the peak.

I can’t stand it anymore… it’s impairing my job. So far all that has swelled up at work has been my feat, or –a new one- the front of my hip, but what if my tongue or lip swells up when I have to work? I can’t do my job like that. Even my feet are causing me to limp around the office…and try explaining why to your co-workers! Haha

The only consistency I can think of with this is that it’s seasonal… But what about this season and the fall of 1997 (I think) are the same, that has not been the same in all the years in between?

It’s a mystery to me… one I really, really wish someone could solve : (

If anyone else has something like this, please, please let me know… maybe if enough people compare notes we’ll think of something!
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I had the exact same symptoms recently and was diagnosed with reactive arthritis. I had a bacterial infection that brought it on. Perhaps you can look up information on reactive arthritis to see if that gives you some help solving your problem.
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Hello--was relieved to read these posts...just logged on and did a search on lips, tongue & throat swelling and this website popped up! I, too, have been having trouble with swelling. It started 10 years ago with my lips swelling (I attributed it to nerves at the time). It has re-occurred just a few times in the last ten years...only my lips...for which I took Benedryl and it subsided. In October, however, I attended my sister's wedding...it was a little stressful and I again started with the swelling...hands and wrists first and then my tongue swelled to about twice its size on one side only. I visited the doctor in my sister's hometown who prescribed an epi-pen for emergency use. She also was perplexed but did say she had just had her Dad in the emergency room the previous week for the same thing! She advised me to have allergy tests (have not, yet) but I can't pinpoint any similarity in my symptoms to anything I touch, taste or smell. I truly believe it to be nerves. It has happened twice since (one of these times it affected my throat on one side) and again last evening while sitting at my computer I felt the tingling in my tongue and it started swelling immediately on one side...I dosed down with Benedryl. I did not got to bed until the swelling had subsided (about 3 hours). It had actually swelled within 1/2 hour to twice its size. I am perplexed....I did ask the doctor if it could be stress...and she said that would be a possibility. I have felt anxiety the last few weeks.....but I sure didn't seem stressed when it started last night. I would be interested to know if anyone regards this as nerves.

Deb W.
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I was almost happy to see the posts regarding tongue swelling (one-sided) as mine has done the same for the last couple of months. I also have experienced hand swelling, lips swelling, throat swelling. I visited my doctor who said she had had her dad to the doctor the previous week for the same thing and recommended I have allergy tests...she prescribed an epi-pen in case of emergency. I'm perplexed. I can't think of any similarities in any of my reactions to the others. I believe it to be stress. Benedryl helps...but it usually takes 3-4 hours for my tongue to go back to normal.

My swelling actually started 10 years ago after my spouse died of cancer. My lips would swell...I'd take benydrl...it would go away. I also had cold hives in the '70's. Any opinions on whether or not stress is a contributing factor? Any information would be helpful. If it is stress....worrying that you may not be able to breathe causes more stress, etc. I have not had a problem breathing to date.

Your symptoms, cures please!

Deb
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I have many things to add - suffering from the same problems. The person that was thinking garlic - do follow that thought!!! I am very allergic to garlic - now. I am allergic to the drug sulfa - all sulfites, garlic; sulfa, onions; related - I recommend a detailed web search.

Stress can be a trigger; but my theory is that is atmosphere based and you just have not determined what yet; perfume - dryer sheets spewing out perfume and cations in your neighborhood - water purification chemicals airborn through your water pipes and or sewer manholes (you will discover the "water treatment" issues occur in the middle of the night on a fairly regular schedule. The odor "masking" agents put in municipal sewer systems. City street cleaning machines.

I suggest you pay very close attention to your surroundings when you feel a "tingle" and begin to make notes. Unfortunately, I have also noticed a correlation with menopause. These symptoms probably will get worse as you get older, so the sooner you can determine triggers so you can avoid them, the better. Oh - family gatherings - my suggestion is that it is/was someone's cologne or the many cleaning items they use in their laundry "offgassing" around you...


Good luck everyone - it is a tough job to stay a part of society once this begins. Rock ON! Tribalgirl

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I have been researching this for about a year. I have been suffering from this for the past 15 years. I can't stand it. I have been to three ENT specialists and a couple of allergists, even my GP. Answer: "Hmm, you do have swelling, it looks like your body is fighting something. Take advil for pain and prednisone for swelling. That's the best we can do. Let it run its course." The other one was "you have a condition called Epstein Barr which is autoimmune and there is nothing we can do. You will have this condition for the rest of your life."

It is so frustrating. It affects my job since it becomes so painful I cannot speak. The majority of my job is either speaking in public, and counseling people on an individual basis. It is had to do when you can barely speak. I am starting to become quieter since I am trying to save my voice for when it is absolutely essential.

I did have rheumatic fever as a kid so I thought this might have something to do with it, buat apparently not.
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Hi there;



Does anybody know about this complaint. A friend started 2 months ago with pain on the half side of her tongue. Sometimes the pain wakes her up and it is associated with mild pain in her same side shoulder and numbness of her arm. She feels tired but no other signs or symptoms. Her MD. told her that it was just a virus and do not bother about that, even he laughed at the complain but now her pain has become worse.



Thanks,





Esme.
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In the last month I have had four reactions to something undescribed. The first, I woke w/ tightness in the chest, that same morning I had fresh fruit and 1/2 bagel and before I could finish my entire mouth, tongue, throat broke out into mini blisters. I took benedryl and a few hours later they went away but my entire mouth felt burned (like when you drink really hot coffee). The next, I had some of the same fresh fruits around 6 p.m. At 11 p.m. I went to bed and was fine. When I woke the next morning around 6 a.m., my lips, tongue, underneath my tongue, cheeks and neck were severely swollen. I took more benedryl. I went to an urgent care clinic and the dr told me the next time I may not be so lucky, that I was on a sudden and severe escalation, gave me steroids for 5 days and prescribed an epi pen. My GP told me it was pollen. I went to an allergist and they tested me for everything, did blood work, etc. Two weeks ago I was at work and I could feel the same tingly feeling coming on and my secretary could actually see it all progress over 20 minutes. I took more benedryl. That night at dinner I had cheeseburgers and french fries- and I thought I would be calling 911. More benedryl. The next morning when I woke my lips were swollen and the fleshy part under my tongue was swollen- more benedryl. So the blood work- testing everything from my thryroid to a disorder called acquired angioedema- all came back w/in the normal levels. They said they didn't really know what to tell me except watch what I eat and keep my epi pen handy. How do I watch what I eat when I don't know what to stay away from. How do I keep my epi pen handy when this is happening 6-10 hrs later. What happens if the escalation is so severe when I'm sleeping I don't wake up? What's happening to me?
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I have much of the same symptoms- unexplained for the past month- four reactions...swollen tongue, lips, mouth, throat, neck. Allergy tests reveal that I am allergic to no foods or pollen. Blood work for testing everything to my thyroid to a disorder called acquired angioedema all came back well w/in normal limits. All I'm told is to watch what I eat- how am I do to that when I don't know what's causing the reaction- and to keep my epi pen close- which is hard to do when the swelling is happen 6-10 hours after eating, usually overnight. What is this? Even the allergist is perplexed. With so many people w/ the same symptoms, how is it possible that no one can explain? I'm scared to go to sleep for fear that I will swell so much that I'll die in my sleep- my tongue and lips are easily 4 times their normal size. It's truly grotesque.
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I have been suffering these symptoms as well as a matter of fact, just this morning left side of tongue swelled and Benedryl took it away in about 3 hours. I am very glad to have read these postings and will share my story.

I first had these symptoms about 4 years ago. It started with my lip one night I could feel it growing with this tingling sensation and I continued to let it go to see if it would go away, I ended up going to emergency as my entire face below the cheeks was about 4 times its normal size,... too say the least it freaked me out. I have had batteries of tests Liver, pancrease, thyroid, went to ENT, Dermatologist, allergist to no avail...bottom line I had "acute edema". I went through every food and changed diet to find out it was an allergy. Nothing. Had syptoms early on where heels would swell, Genitals, arm, hands but most of that has not occurred for sometime it now seems throat (soft tissue of upper palat (Not a pleasant feeling but has not cut off airways), Lips, Tongue

After researching I did find one thing that was extremely interesting. I have never been allergic to anything, but before this started I had a Urinary Tract Infection and was treated with a Sulfate Drug Septra, also know as Bactrim (it was banned in the UK due to extreme side effects). I had a severe reaction to it, fevered and rashed severely, stopped taking it and remained fevered for two more days went back to doctor to get a new prescription. The symptoms all started about 2-3 months after this and I go through peaks and valleys with the symptoms. I try to take 24 hour reactine when I dont feel right, and for the most part it seems to work. But I do stop taking it to allow my system to work with out it. Can go weeks or months without symptoms sometimes. But seem to be getting less frequent.

No idea any more, and the doctors just don't seem to want to explore it...nor do they blame the drug, stating it was safe for use here in North America?

Coincident not sure but I am still researching.
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Just last night, my wife had exact same symptom. We went to the ER, the doctor said my wife has alergic reaction to her blood pressure medication, Lisinopril. She has been taking Lisinopril for 9 years with no problem, but the doctor said, some people might go for several years like my wife before they show this reaction. They admited my wife to the hospital so they can monitor her for 24 hours before she can go home. Now, she needs to get a different kind of blood pressure medication.
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I know this is a response to an old post but I hope it helps.

You can react to food items and other things you have been exposed to more than 6 hours later. 24 hours is even possible. I have been told to take no pain killers but Tylenol. Aspirin, Alleve, etc can be triggers. this was confirmed when I recently had surgery and was takin Percocet during recovery. 2 hours out of surgery and back into ER with swollen tongue. Keeping detailed diary can help. Detailed means spices... everything! There is also something called the Elimination Diet you go down to basic food them slowly add food one a week till you find it. They still don't know what causes mine. I have tested negative for all allergans. But I will keep you all posted. EPI pens can be a life saver don't spare the cost of getting one if you need it. benadryl will not always work fast enough.
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Hello, It was interesting reading the posts. I recently went to a first aid course and were talking about allergic reactions and anaphylaxis, and how there is a percentage of people where no one knows what they are allergic too, even with tests done. She was going through symptoms of anaphylaxis and asked if anyone has any of the symptoms on the list. I said that I went through a faze when I was younger where half my tongue would swell up, or my bottom lip, hand, foot would totaly swell up so I couldnt bend toes or fingers or large area of flesh on other parts of body after feeling an itchiness on area before it swells. I said that I had no idea what the reaction was too, but I had been to a doctor in past who said that only if it starts to effect throat then would give steroids. It has never effected throat thankfully and only ever happens in a blue moon and not all at same time. But After reading one post where someone had it regularly when younger then went 9 yrs only having it 3 times and now has it always and is effecting his work has made me think "is it just dormant for a while and will come back worse?" The lady on first aid course suggested getting allergy test done and seeing doctor again.
Its been about 2 yrs since last swelling. What does anyone think? I always thought it was dust mites biting me
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