I have a condition called idiopathic angioedema...anyone have any insight?

[UCLA Dem]

The name, idiopathic angiodema means "unexplained swelling."

In Feb. of 2004, after taking some aleve, I felt swelling in under my chin, in my throat, tongue and lips. It was fairly mild (in comparison to reactions some people have) and I have never gone into anaphylaxis or had to use my Epipen shot). I was still in college at the time and I ended up in the emergency room mid-terms week! In this first episode it was evident that I was swollen, but since then, no one else can tell when I'm swelling.

They originally thought it was just the aleve, gave me some benedryl and told me not to take any type of non-steroidal anti-inflammatory medications (i.e., advil, aleve, and asprin).

I discontinued any kind of advil, aleve etc, but the swelling continued off and on, happening at any time of day, no matter what I ate or how much sleep I got or what environment I was in (e.g., at home 50 miles away or at school). For the last 2 quarters of my undergraduate career I survived on benedryl and steroids. I've been to a couple allergists and am now working with an immunologist. She (as with the other doctors) thinks its an allergic reaction (verses something hormonal or related to my immune system), but to what I am allergic to she doesn't know. We do know however, that it doesn't seem to be a food, pet or common airborne allergy) I've been on a new medication (atarax, along with taking clariton, singulair and zantac; I only take benedryl as needed and do not take steroids)that seemed to be helped for the last week for so, but the swelling has come back in the last couple days. Needless to say I am very disappointed.

The condition is chronic and comes and goes. There have been times when I have been strong willed and determined enough to fight through the attacks without taking benedryl, which makes me feel horrible (i.e., tired and crappy), but sometimes I get so unnerved and overwhelmed, I give in and take it.

Some weeks are better than others. It has never cut off my breathing, but swelling around my throat still makes me very anxious. Plus, there's only a 50% chance they will even figure out what I am allergic to. That I really don't mind, I just want something that takes care of my symptoms. When I have swelling I just feel awful; swollen as well and anxious and scared. I've gotten to where I hate being alone because I'm afraid I won't be able to get help if I need it, and also because its harder for me to stay calm when I'm by myself. When others are around they help soothe me that I'm okay. A few times I've become very panicked and its so hard to calm myself down. I know I must sound like at big wimp, but its just awful and I don't want to feel scared or anxious anymore. Most times though, I manage to ride to the anxiety and keep composed, so I am functioning in my daily life just fine (i.e., going to work, shopping etc.)It does make me feel depressed at time because I feel completely helpless, no one seems to really know what the hell is wrong with me!

I was just wandering if anyone else has dealt with something similar to this and if you have some advice as to how to cope with it. I welcome any insight, whether it be to help cope with the condition or the anxiety and fear.

Thanks so much for listening.

[Warpy]

1. I'd talk to your doc about your anxiety level

because it sounds like that is what might need to be treated first.

As to your sensitivity, who knows? You may be allergic to an ingredient in perfume or other cosmetics, including those male colognes that smell like bug spray. You may be allergic to bug spray, and just get a whiff from time to time, even when it's not strong enough for you to smell. You may be allergic to something pervasive like cig smoke (which does it to me, so much for a social life).

Whatever you're allergic to, it seems the anxiety is making it worse. Talk to your doc about that.

[UCLA Dem]

2. I agree. Thanks.

I have talked to her about it, but she just says to stay calm. That helps, but then she says stuff like the condition is unpredictable and could get worse at any time.

Stuff like that sticks in my head. Since I've never really had a true emergency, I don't know what it will feel like.

When I get the most severe swelling, I'm not sure if my throat is actually closing up or its just the anxiety taking over. But either way, I agree, anxiety makes it worse.

[Paradise]

3. have you ever taken a quinolone/fluoroquinolone antibiotic?

these antibiotics come in many "brand" names like cipro, levaquin, et. al.

you might consider investigating whether you have taken any of these antibiotics, and,
if you have,
you may wish to investigate further,
i.e. "adverse drug reactions to (brand name of your particular quinolone/fluoroquinolone antibiotic)",
or just
"adverse drug reactions to quinolones/fluoroquinolones"...

in any event, you will be shocked at what you learn!

[REP]

4. Something Similar

I have venous stasis, which is edema in one leg as the result of deep venous thrombosis (blood clots). My left leg is sometimes so swollen that it is more than four inches larger around than my right leg, and sometimes the swelling is bad enough to crack the skin. I'm at risk for for another DVT, and those always carry the risk of death ... but since I had several that I barely noticed apparently, I don't get too worried.

Because of my kidney failure, I have edema in my face. Actually, I'm edematous allover, including some that interferes with my respiratory functions, and I deal with that by taking 120mg of Lasix daily. I still have edema, but it I can breathe.

I have had an anaphylactic reaction penicillin after decades of not being allergic to it, and boy did that scare the crap out of me! I could barely barely breathe; fortunately (in an odd way) I'm asthmatic, so my rescue inhaler in massive doses worked to open me up enough. Yikes! I sure sympathize; being that swollen is no fun at all.

[Maraya1969]

5. Hi, I just saw your post and I hope you can read this. I am severely

allergic to formaldehyde. I had paneled walls years ago and somehow figured out that they were what was making me sick. I had someone take them down and like a dope, the next day while there were still all sorts of little wooden splinters and before having the rugs thoroughly cleaned I played with my little dog on the ground.

Well, the lips swelled, the tongue swelled and the throat AND I would like to add that I got that anxiety condition called de-personalization or something you could explain like watching a movie of the world go by. It is very terrifying and I had always though it was just an anxiety symptom because I have been diagnosed with panic disorder.

I just spoke with a man at an allergy store and he said there is formaldehyde in all sorts of things. I bought a fairly inexpensive, (expensive????) air purifier $300.

And there is dust mites and cockroach droppings. I have special covers for my pillows and mattress and...............years later from the experience with my dog I am still having allergy symptoms and and trying to figure things out. (Actually I am full of shit - I have 2 cats now which I did not have before and I have been told NOT to have cats and NOT to let them in the bedroom. I only begin to listen again after I get real sick....which is like right now.):)