Eagles Syndrome at food and medicine intolerance

I was wanting to see if anyone has had food and medication intolerance that got better after styloidectomy surgery. I started having intolerances to gluten/wheat/eggs and some other food plus intolerance to penicillin and other meds. Symptoms are red chest rash, tight throat, itchy arms low blood pressure. Never turns into anything more. I was wondering about it being from the vagus nerve that controls so many things including histamine and inflammation. Just wondering if surgery helped. :blush:

Interesting idea, I do think the inflammation from ES maybe contributed to a possible autoimmune condition for me (only mild so not pursued a diagnosis!), & others have AI conditions too…

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My son had bilateral styloidectomy in December and it did not help his throat and tongue pain that flares up after certain food, preservatives, spices, etc. He does not have any of your symptoms but his issues flare up more directly from these certain things.

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I have some similar symptoms, but I have Ehler-Danlos as well. There is commodity with eagles and EDS. Have you looked into Mass Cell Activation Syndrome?

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Yes but I don’t have it. Do you have MCAS?

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I am having symptoms. I am going to ask allergist to find out.

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Kerri have you guys tried H1 and H2 blockers for MCAS? I am being treated for it, do not have a confirmed diagnosis as the markers are hard to test for and aren’t reliable. Sometimes the symptoms along with response to treatment is used for clinical diagnosis.

I’m still working through getting it under control however, when I started the H1 and H2 blockers, my pain reduced significantly. I had to go off of those in order to have allergy testing and I could tell the difference.

So right now I’m taking Zyrtec twice a day and up to three times and Pepcid 20 mg twice a day, and two nasal sprays one is a mast cell stabilizer. It’s the only prescription for MCAS I’m taking at this point.

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I tried all the meds for MCAS even though my tests didn’t come back positive. It made me more sick so I quit everything. I’m hoping that getting my styloids out it will help me vagus nerve which controls histamine etc. :slightly_smiling_face:

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Hi, good to head from u. My son had tried those in the past. He tried many different ones for awhile but he could not tell any difference except some caused bad dry mouth. No more problems needed!
He can’t do nose sprays but that was also recommended to him. I am so glad they are helping you. They do help a lot of people. I’ve done a lot of reading on it. Do u feel like the surgery helped some symptoms though? I hope so. It helped my son’s head and neck pain but not the tongue and throat pain at all. I still think the GPN nerve is the culprit as well as MCAS. Have u thought of having a consult with Pam, the admin for the MCAS group on here? I’ve often thought of it but can’t get my son to do it. She seems really knowledgeable.
Please keep me posted how things go for you. I’ll be thinking of you

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Fyi, When I said Pam on here I meant on the Facebook group

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