About three months ago my tongue swelled up. It was after a long period of itchiness and sneezing, and after some time in the ER on benadryl and … Prilosec? Something like that, it subsided, and I went in for an allergy test. Turns out I’m allergic to wheat and egg whites, but nothing else on the list pinged.
I start changing my diet scrupulously, and taking benadry every 6 hours. The itching goes away completely. The sneezing does not. I’m hitting once or twice (and sometimes three times) a day in which I suddenly feel like someone’s jammed something sharp up my nostrils, and I start sneezing uncontrollably. I’ve been put on nasal steroids as of last week, but they don’t seem to be doing anything.
Fast forward to yesterday. I’ve studiously avoided what I’m allergic to, only having it once, at which point my tongue started blistering immediately, so I know I have an ‘immediate warning’ if I hit anything. Still, I real labels and police myself like … A policeman, I guess.
Still, 6:45 yesterday I’m in my car and my tongue starts swelling. I immediately divert to the ER and check myself in.
Couple of differences this time:
The benadryl takes longer to bring the tongue swelling down. I attribute this to the fact that I’m taking benadryl every day now.
My uvula is also swollen. This is ultra, ultra-annoying, as it’s touching my tongue and pushing me towards gag reflex every few minutes I’m awake, and making it hard to actually sleep.
Now, one thing that is the same that the ER doctor said is inexplicably strange- it’s just the left half of my tongue. Both times. Right hand side doesn’t swell. Just the left half.
So, anyone out there have any anecdotes or thoughts on what the hell might be going on here, and / or what I might do about it? I’ve been referred to an immunologist, but I’m not sure if my insurance will cover it. Here’s hoping.
Sometimes, if I fall asleep on my back with my mouth open, my uvula will swell. It’s also swollen when I’ve eaten some herbed dishes, such as rice or stuffing, but it could be because soon after I did go to sleep with my mouth open.
What you are describing is called angioedema. It is commonly caused by allergic type reactions, but there is a hereditary version which does not respond well to antihistamines/steroids. You might need to be checked for the mutation. This version can become quite dangerous if not treated promptly with appropriate meds.
This Wikipedia article is a little heavy on the medical jargon, but should be a good place to start. There’s even a picture of a one-sided swollen tongue so you don’t feel lonely.
Yikes! That sound terrifying. I’m so glad you’re okay! But I have to put on my scold for a moment.
This:
does not mean this:
Sorry, but you’re now ALLERGIC allergic to something, and you can’t get away with cheating. Really allergic, not, “I don’t like that so I’m going to say I’m allergic,” allergic. Really allergic, not, “My gut doesn’t make lactase so milk makes me fart” allergic. This is a serious, lifethreatening allergy and if you’re fond of breathing, you can’t have it once. Not even once.
Did they give you an epi-pen yet?
(It was probably Prednisone they gave you, not Prilosec. Prilosec is for requent heartburn. Prednisone is a corticosteriod that reduces inflammation.)
You’re allergic to something. Not entirely sure what, but yeah. There was possibly a trace of Something in your car, like a smear of peanut oil on the steering wheel or a cleaning product was used that had shellfish derivatives. The immunologist will run some tests to figure out what your Something or Somethings are. Then you’ll do a whole bunch of research about all the “hidden” sources of your allergens and feel completely overwhelmed and powerless and probably mad at the world. Then you’ll start to figure it out. In a year you’ll have it all down like second nature and be able to tell other people how it’s really not that big a deal when you get used to it.
Call the insurance, but unless you have spectacularly crap insurance, they’ll probably cover it.
He’s had allergy testing already, wheat and egg whites. Also angioedema does not correlate well with allergen exposure and in many cases no direct cause is found. I’m assuming the OP is not taking an ACE inhibitor for blood pressure control (something like lisinopril). That class of meds is notorious for causing angioedema and surely any doctor would have stopped that med immediately.
Also, he was probably given Pepcid (not Prilosec) in addition to Benadryl and prednisone. Pepcid (and several other early reflux medications) blocks the H2 histamine receptor.
Pepcid is correct. Sorry- had been posting without sleep, and much stress. Interesting that angiodema doesn’t correlate with exposure. That’s both good and annoying. Good because that means there’s other reasons… Annoying because I really would like to know what the reasons are so I can do something about it!
And yes, no blood pressure meds.
The ‘only had it once’ comment was due to me being given a cracker by a friend that had wheat in it. He swore it did not. He’s a moron. Trust me, I am very very careful (and now double-check the packaging of anything in his house that he offers me.)
No epipen here. I’m starting prednisone today, which from last time I know I get about four or five side effects from. As none of the side effects include ‘tongue swollen and possible choking from same’, I’m willing to make the trade-off.
