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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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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Deb W.
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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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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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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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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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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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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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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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