Idiopathic Anaphylaxis - Angioedema for no apparent reason

Posted by Tokorozawa60 @tokorozawa60, Mar 26, 2012

My daughter (40), her daughter (3) and I (61) have a history of Anaphylaxis of unknown origin. Both my daughter and I have had severe enough experiences requiring emergency medical care. My granddaughter experienced her first reaction at about 18 months. I would like to correspond with others who have this condition.

Liked by taterjoy

Not sure if this is the group to be asking, but has anyone else been diagnosed with idiopathic anaphylaxis? If so, I’m wondering what tests were run by your medical team (allergy?) in order to rule out potential “known” causes.

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@taterjoy

Not sure if this is the group to be asking, but has anyone else been diagnosed with idiopathic anaphylaxis? If so, I’m wondering what tests were run by your medical team (allergy?) in order to rule out potential “known” causes.

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Hello @taterjoy, Welcome and Thank you for posting to our Mayo Clinic connect community!

I have moved your discussion to our Healthy living group and would like to introduce you to members @tokorozawa60, @nicky1, @jayjayks, @abbywjohnson, @justanotherman and @danielnavarrete365, all who have posted about Anaphylaxis in the past. It’s been sometime since these members have posted, hopefully they will return after receiving mention notification and share some details with us.

While we are waiting for responses, please review this link http://mayocl.in/2qJKHy2 to a Q&A from Dr. Benjamin Wright on Food Allergies.

@taterjoy, What allergy testing have you had done so far? What symptoms have you experienced? Do seasonal allergies pose any threat to you? if so, what seasons are the worst?

Liked by taterjoy

REPLY
@taterjoy

Not sure if this is the group to be asking, but has anyone else been diagnosed with idiopathic anaphylaxis? If so, I’m wondering what tests were run by your medical team (allergy?) in order to rule out potential “known” causes.

Jump to this post

Thank you for responding, Jamie, and I’m sorry I did not see your reply sooner. I have no seasonal or food allergies that were distinguishable by a blood test just AFTER the incident, which covered (I believe) hundreds of allergens.

The only seasonal irritant that I know I am sensitive to is rapid temperature (heat/cold) changes, and historically, summers are the worst. A cholinergic response triggers hives, welts, swelling of the tongue and difficulty swallowing. I took Atarax for years beginning at age 26, and carried an epipen for emergencies. After a period of five straight years with no incident, I stopped taking Atarax. I’m now 60. The recent incident was a sudden, rapid closure of my throat which left me unable to breathe. It was very sudden. I was visiting a 93 year old friend inside a Residential Assisted living center. A CNA witnessed me fighting for breath and falling to the floor; she called 911 and I went to the ER for help for several hours. I now carry two EPIPENS and an inhaler, took Zyzal (and another allergy RX which I can’t recall) for several months, and have had to use the inhaler only twice since the initial, frightening incident in May. The CNA suspected strong cleansers or someone’s perfume. I no longer go inside, but pick up my friend and take her out.

I am also “sensitive” to MSG (it gives me a headache, puffy dry eyes, and stomach problems). My skin sensitivities include welts from eucalyptus & feverfew. And a reddened skin area (now seems permanent) where I used to wear a Fitbit. I really have no idea what happened to cause it this past April, but fear that I was exposed to a chemical or heat/cold transition that closed my throat. My epipens and bronchodilator are with me 24/7.

Thanks for tagging others with similar issues, Jamie!

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I have had every possible allergy test and I am not allergic to foods etc. I had tongue swelling with Penicillin, but when tested by allergist I was not allergic to it. About once a month I wake up with my tongue swelling enough to have to go to the ER, even if I take liquid Benadryl immediately. I read about the Mayo Clinic doctor recommending 3 medications to be taken everyday, I already take Famatidine because it helps with gas, now I will try Zyrtec and Montelukost daily. I have high blood pressure and my cardiologist worries about changing my medication because of my Angioedema even though I seem to have attacks when mredications are not changed. No way to live!!!!! Afraid to travel, there has to be a cause. Any other advice would help.

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