Not theoharides. It was a woman. Can't remember her name.
Drs Akin and Castells run the Mastocytosis clinic at Brigham and Women's Hospital in Boston. They treat MCAS patients too but the paperwork to be accepted there is insane according to my LLMD. You cannot self-refer.Could it be Theoharides?...good idea. Afrin has a forums as well.
Dr Brent Goodman is a neurologist at Mayo, AZ. And there are now two immunologist there that he works with in regards to his POTS patients with MCAS.
Issue,Most of us with MCAS don't use Tagament as it can cause issues with an enzyme that can potentially cause more issues with histamine.
Zantac is my favorite for an H2, and I only use a half. My preference for an H1 is Allegra. It causes less issues with brain function, for me.
I am one that also has hypogamaglobulinemia with MCAS and POTS along with EDS. this we refer to as the trilogy. Seems many with EDS and POTS have MCAS. FYI, you need to use a H1 with an H2.
Using an H2 alone causes it to convert to an H1 and causes allergy symptoms to be worse.
GastroCrom has been a HUGE help to me. I find it to be extremely beneficial for many reasons. It is also a mild calcium channel blocker and helps with tachycardia of POTS. I was able to use it without ketotifen. Though some need both.
Singular wasn't a good fit for me. But some need it too.
As mentioned in the article; emotion, activity, heat are also triggers. For many, sex and arousal is a trigger.
Many women who just can't seem to get their hot flashes under control - it could be MCAS.
Alcohol is a big trigger for most of us.
Overly hot baths or showers are not good. We tend to have problems with regulating our body temperatures.
I have had times where I can go off my meds and stay strict to my diet and do pretty well. I have found being gluten free and mostly vegan to be a big benefit.
But put me under stress and meds are necessary.
I do have an epipen as I've had mast cell "attacks" with my heart. Called Kounis Syndrome. Appears just like a heart attack and the treatment is nitroglycerin and massive antihistamines along with saline IVs. But thankfully there is no heart muscle damage.
I also have to use herbals to keep my blood thinned out. Thick blood and blood clots run in my family. There appears to be a genetic connection too. We feel quit certain, My mom had it too. All the signs were there, just undiagnosed.
Yes, it can affect every function of your body and give some very uncomfortable symptoms. But it can be managed.
It's not a true allergy but an over activation or degranulation of mast cells. Sometimes there is no rhyme or reason for it --- it just is.
Thanks Who Me?
Sorry, I'm not getting my messages or any updates, not sure why.......@Cort ????? I don't personally get the eyelid problem, but one of my nephews does. His dermatologist calls it blephritis. He also seems to have MCAS. My mom had blephritis too and MCAS. I'm thinking there could be a connection. But don't know for sure. He has to wash his eyes with mild soap and put a cream on them. It comes and goes with him. Poor kid, he got all the bad genetic things.Issue,
I have pondered this as a possibility for me & my family (lotsa members manifesting ME/CFS, POTS, FM, IC etc in varying combinations). I've never had a typical severe allergic reaction to anything.
However in the past year I've been blessed enough to get in to see Dr Vera at INIM. Among other slight things showing up my histamine levels were high normal.
She diagnosed a bad case of POTS & began treating that. But this year have experienced, after sipping margaritas for an afternoon, severe BP drops about 12 hrs later (like 65/41). At first we didn't make the connection until it happened 3 more times.
Hadn't "caught" anything in years. Those same years had been severely disabled w MECFS (housebound to bed bound). Dr Vera began slowly treating my immune system: LDN & Vit D 3, then Inosine, then Reishi. I have experienced tremendous improvement in pain levels.
But about 6 weeks ago "caught" a cold. My NP suggested an increase in Vit D3 (CDC protocol for colds & flus) It did indeed cut my cold in half but my pain skyrocketed, sleep went wonky & my eyelids exploded with what looked like severe psoriasis. (Have had patches off & on for years)
Right now I've just come from the dermatologist & she declares this is an allergic reaction. My sister has had the same thing on her eyelids before & ive seen it on my first cousins at times.
Have you ever experienced this as part of MCAS? Or does this sound familiar to anyone?
Thanks again @Who Me? At first I assumed it was proriasis flaring in response to too much immune boosting but the dermatologist swears it is NOT psoriasis but an inflammatory response to an allergen...@San Diego knows pots and histamine.
As for your eyelids, who knows. Everyone is different. I have psoriasis and it's an autoimmune response. so maybe it's some other skin crud. (That's the medical term lol)
If you want anyone to get an alert you need to put an @ sign in front of their ID. You know you did it right if it's underlined when you post @Hezza
Thanks @Issie & sorry for the "issue" with your name- gotta love autocorrect or not so much. My sister would have break outs at the corners of mouth at the same time as the lizard eyes. She started using an expensive lip balm that has an antiviral in it. Cleared her right up.Sorry, I'm not getting my messages or any updates, not sure why.......@Cort ????? I don't personally get the eyelid problem, but one of my nephews does. His dermatologist calls it blephritis. He also seems to have MCAS. My mom had blephritis too and MCAS. I'm thinking there could be a connection. But don't know for sure. He has to wash his eyes with mild soap and put a cream on them. It comes and goes with him. Poor kid, he got all the bad genetic things.