Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Is this called "idiopathic anaphylaxis"? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1312917119 Message started by MastoGem on 08/09/11 at 08:11:59

Title: Is this called "idiopathic anaphylaxis"?
Post by MastoGem on 08/09/11 at 08:11:59

I recently posted something about my shortness of breath that is usually accompanied by nausea or a running noise and maybe sneezing and coughing. I happens when I eat the wrong thing and/or when I'm stressed. I just found a link describing the symptoms of anaphylaxis and I have to say that it sounds like what happens to me.

How do I know if I have "idiopathic anaphylaxis"? How does one test for this? or get diagnosed with this?

I ask because I don't know if I'm handling these episodes adequately. "Handling" lol. Actually I don't do shit, but wait them out. But if they are a type of anaphylaxis I'm guessing I should get an Epi pen and at least consider sitting in the waiting room at the ER without registering. But who's got the time?! I'd live there in times of stress.

Hopefully with Ramona's great advice this crap will stop happening as often. But please clue me in here. Is it possible that I have IA?

Title: Re: Is this called "idiopathic anaphylaxis"?
Post by Starflower on 08/09/11 at 11:33:34

What you've been experiencing does sound like anaphylaxis. It doesn't really matter what you call it... MCAD, IA, etc... Unlike people with food allergies, you don't necessarily need to use an EpiPen every time. It's a really good idea to have one with you (!!), but here's what I do first: as soon as I get one of my early warning signs... hives, dizziness, pain in my stomach, a feeling that I'm "off," etc... I take 50mg of liquid Benadryl. Usually that's enough if I catch a reaction early. I've learned not to wait and see how bad it gets before treating myself. If things are not better within five to ten minutes I'll take an extra dose of H1 and H2 antihistamines. The next step is to add prednisone (60mg). If that still isn't working or I'm having a very fast/severe reaction, then I would use an EpiPen... especially if I felt like I was going to pass out or my throat was swelling. If you use an EpiPen, call 911 or have someone drive you to the hospital... don't drive yourself. Lay down so your body doesn't have to work so hard to maintain your blood pressure.

Ask the doctor who diagnosed you with MCAD for a Rx for EpiPens... get a "twin pack" (two of them hooked together). If you use one take it with you to the ER and they'll give you a new Rx. I've only had to do this once in the last two years! You'll eventually get more comfortable treating yourself (which will reduce your stress!). It's much better for everyone if you don't have to spend a lot of time in the ER :)

Heather

Title: Re: Is this called "idiopathic anaphylaxis"?
Post by DeborahW, Founder on 08/09/11 at 15:41:49

My official diagnosis is Idiopathis Anaphylaxis. I have had it over 15 years at least and I have never once used an epi pen. As Heather wrote, some of us have figure out to take some extra meds and that will calm down the symptoms and avert a situation. I will take an extra allegra or zyrtec. After that I will add a singulair. If my symptoms get worse rather than better (I respond very quickly to meds, so I know within 5-10 minutes), then I will take my most powerful med: hydroxyzine. After that I would pretty much be passed out if that didnt work and I would need that epi! LOL

Although I have never had to use an epi, I always carry 2 with me at all time. I even got a great sunglass holder with a latch so I can latch the twinpack (inside the sunglass holder) to my belt loop if I am doing something and don't want to carry a purse.

Title: Re: Is this called "idiopathic anaphylaxis"?
Post by Riverwn on 08/11/11 at 17:35:54

Dr Castells definition of anaphylaxis is a sudden severe reaction that may be life threatening if not treated immediately. Your symptoms could be reacting and/or anaphylaxis. The thing is this--if its building slowly, its probably mast cells being bad--reacting... if its sudden then its both reacting and probably anaphylaxis.. the good thing is, we treat them the same way...

Heathers advice is excellent. Im very much hoping that as you change your meds for the better you will be much more in control of it yourself like Debbie is now--and shes a supermom :) You can do it---just dont be afraid to take more meds... in the end you will see that fear to take meds keeps you sicker longer and more meds means YOU control it, it doesnt control you :)
hugs
Ramona

Title: Re: Is this called "idiopathic anaphylaxis"?
Post by MastoGem on 08/12/11 at 06:30:30

Thanks guys I did get a epi pen twin pac. And the Benadryl does really seem to help with my breathing. I'm going to need a much bigger purse.

It's so nice to know you guys get it. I've literally hidden for years when this happens because I couldn't explain it.

And thanks again Romona. You just helped me realize that I actually have TWO different types of "breathing problems" - the ones that come on quickly about 10 mins after eating and last about 45 mins and a type that's so low grade that it just kinda hangs around in the background sometimes.

Title: Re: Is this called "idiopathic anaphylaxis"?
Post by Sandi on 08/14/11 at 18:13:25

The only purses I buy now have different "sections" the middle section is epi's, dye free benadryl, zantac, allegra and a copy of a quick emergency version of my condition for emergency use. That way no digging, reach in and grab!