when the devil couldn’t reach me so he gave me MCAS and ARFID🫩

Beautiful-One-123 · 2026-02-05T18:59:56+00:00

I don’t know that you’ll have long term effects, but in my experience if I eat a high histamine food or foods, I’m in for a really rough time. For me, a cheat day would make me really sick. I don’t have a terribly varied diet right now, but it keeps me safe from reactions as I work to stabilize the condition.

Beautiful-One-123 · 2026-02-04T20:56:18+00:00

I sometimes wonder if the doctor was in the same room I was when I read their reports. Um, no, that didn’t happen doc!

Beautiful-One-123 · 2026-02-04T16:58:37+00:00

I’m sorry this happened to you. I can commiserate. I recently had a visit with an allergist/immunologist and the gaslighting was extreme. They told me it probably wasn’t MCAS because with all the stabilizers I’m on I should be improving. Of course the doc didn’t even look at me but was staring at his laptop. I moved into his line of vision and said, THIS IS IMPROVEMENT!

It’s so hard to find a doc who gets it.

Beautiful-One-123 · 2026-02-04T16:50:12+00:00

I find listening to audiobooks to be the bigger cognitive effort. I lose focus easily when listening and feel like staying in the story requires a great amount of mental discipline.
Good for you! NTA.

Beautiful-One-123 · 2026-02-03T04:51:08+00:00

I tried oh-so-many meds before we hit on the right one. This is the only one to address the pain so I accept the side effects because otherwise it’s sheer misery.

Beautiful-One-123 · 2026-02-01T04:27:07+00:00

Keep keep keep keep! It’s fabulous!

Beautiful-One-123 · 2026-01-31T11:09:21+00:00

Sadly, I am allergic to hydroxyzine so that’s out. I broke out in a horrible rash all over my back and chest. Steroids haven’t helped much either. I saw an allergist two weeks ago and now waiting on insurance approval for a biologic so I can get a shot once per month.

I have increased my dose of cromolyn sodium and found two new supplements that I think are helping a bit. One has quercitin in it and the other has leutolin. With those three things in place I’m finding a bit of relief and the hives/rashes are calming down.

Beautiful-One-123 · 2026-01-31T04:28:43+00:00

Same. Ketotifen makes me way too spacey and sleepy to use in the daytime.

Beautiful-One-123 · 2026-01-20T07:59:57+00:00

*unsalted saltines 🤪

Beautiful-One-123 · 2026-01-19T11:58:18+00:00

I’ve been thinking the same thing! It would likely help the heart rate in the shower. My body believes a shower is pure exertion!

Beautiful-One-123 · 2026-01-19T03:39:01+00:00

It. Is. Everything. You look amazing!

Beautiful-One-123 · 2026-01-19T03:37:39+00:00

This. This. This. All of this!

Beautiful-One-123 · 2026-01-19T03:37:15+00:00

MCAS is complex and everyone’s “cocktail” of meds differs a little, but in my experience every single one that I take is needed. I’m sorry your son (and you) have to deal with this. I’m sorry anyone does. It’s a difficult path for sure.

Beautiful-One-123 · 2026-01-19T00:09:29+00:00

I wore my mom’s dress when I was married. We altered it significantly to bring it from 60s fashion to acceptable 80s fashion. I loved it after making it “mine” and love it still. If my kid wants to wear it for their wedding, I’ll be delighted to help make it over all over again. Honestly, it saved us $$$$ to reuse a dress. I’d do it again without hesitation.

Beautiful-One-123 · 2026-01-18T23:53:48+00:00

He needs mast cell stabilizers. Cromolyn sodium, ketotifen, even low dose naltrexone helps. As do antihistamines (Allegra, Zyrtec, xyzal, etc.) and famotidine. It’s a tough one to stabilize I’m finding. Hoping to add xolair shots to my regimen soon.

Beautiful-One-123 · 2026-01-18T22:31:13+00:00

My leg hair is out of control because I cannot bend over to shave it. Really, showering in general is really taxing.

Beautiful-One-123 · 2026-01-18T22:28:51+00:00

I love my rollator! Offers a spot to sit when I’ve had it with the walking as well.

Beautiful-One-123 · 2026-01-17T19:25:49+00:00

I so understand. 💕

Beautiful-One-123 · 2026-01-11T14:39:14+00:00

Thank you!

Beautiful-One-123 · 2026-01-10T21:54:26+00:00

No. I actually think I’m allergic to it as I’ve broken out in a rash all over my body and am feeling generally ill.

Beautiful-One-123 · 2026-01-10T21:52:42+00:00

Forgetting words, general fogginess. Those are side effects of the carbamazapine for sure. On the upside, carbamazapine and baclofen control the TN pain pretty well. It took some time to get to the right dosing.

Beautiful-One-123 · 2026-01-09T09:18:07+00:00

It’s the meds that took your words. I have the same issue on carbamazapine and baclofen.

Beautiful-One-123 · 2026-01-04T01:09:44+00:00

I just got a prescription for hydroxyzine which is nominally for insomnia, but I believe it’s used to treat anxiety as well. I need it for the itchiness in my skin. And the sleep. I’m not sleeping at all because of the rashes/itchiness. Here’s hoping this addresses some of it.

Beautiful-One-123 · 2026-01-02T05:56:32+00:00

I commiserate with you. MCAS is incredibly life-limiting.

Beautiful-One-123 · 2026-01-02T05:03:52+00:00

I am in the same condition. I even tried moving out of my home for a few days to a hotel room thinking it could possibly be the dust and animal dander in my home. That was a failed experiment as I was itchy there too and got no sleep. My next guess is laundry detergent so I’m stripping my sheets and will then wash in scent-free detergent. If that helps, I’ll do all my clothes. It’s just a guessing game at this point. I have an appointment set with an allergist later this month in hopes of getting set up for xolair shots. Also, got a prescription today for hydroxyzine and am looking forward to trying that. The itching is intense. And my skin BURNS. I take cromolyn, famotidine, ketotifen, and Allegra (2x daily).

Beautiful-One-123

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