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

[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...