u/Frosty_Recipe_3993

I’m in Japan for three more weeks and ran out of Claritin which I was taking daily.

Found Talion AR at a local pharmacy which is bepostatine, a known H1 blocker and mast cell stabilizer. Bepreve is the only variation of this sold in the U.S. — for eye allergies.

According to Google and Gemini, it’s a better alternative to Claritins they have here because it doesn’t contain fillers and dyes.

Am I the only one who’s taking Talion AR bepostatine to manage MCAS? Has anyone else here (possibly in Asia) tried it?

When I try to relax — whether meditating or soaking in a bath tub or just trying to fall asleep — my shoulders twitch.

Sometimes my whole upper body. Sometimes the legs too.

I’ve seen various doctors about it and they could not help me. Neither the orthopedist nor neurologist.

I recall reading an AI summary that said involuntary twitches can be a symptom of MCAS.

Do you experience this “zombie twitch” like I do?

Anyone see improvements from managing their MCAS through supplements or otherwise?

The twitches eventually stop once I reach a deeply relaxed state.

I had a big flare-up in February due to exposure to synthetic hormones. Here’s what’s been helping me get back to near normal since then.

But first for context —

My symptoms included:

GI issues,

Air hunger,

POTS,

Low blood pressure,

Light and heat sensitivity,

Chills,

Chronic Fatigue,

Insomnia,

Brain fog.

Doctors I saw who couldn’t help—

Allergist

Gastroenterologist

PCP

OB GYN

I learned about LDN Direct Dot Com from a Google doc list of MCAS doctors I found on Reddit.

Thank you, kind strangers on the internet!

I went to LDN Direct for a relatively low cost telehealth appointment. It included prescription for cromolyn sodium (which I could not tolerate) but more importantly to a functional blood analysis.

The blood draw and report and telehealth appointment all combined probably cost around $500+.

But it’s even more expensive being out of work because you can’t breathe, turn your head due to near blackout, or digest.

The report included detailed analysis and list of supplements customized to my levels.

Before I got the functional analysis, I started taking:

Pepcid AC

Claritin

Ancestral Health Grass Fed Kidney DAO

Quercetin phytosome

Ester-C

And Magnesium Glycinate.

I started eating more red meat like lamb cooked simply with just salt. Lamb is high in vitamin B12, zinc and iron and selenium — nutrients I was deficient in.

I cut out all histamine and oxalates and salicylates too.

Mainly ate white rice, some chicken, lamb and beef.

Then once I got the functional report, I added magnesium citrate, vitamin D.

Every supplement I titrated up slowly. Sometimes starting with half a pill at a time.

Then this week I added Basic B Complex which had high level of Thiamine (B1).

I read another Redditors post here that she saw improvements once she started taking Thiamine. So my hopes were high.

Initially I felt dizzy and buzzy — like I was going into a flare.

Took some more Ester-C which helped.

It’s my second day and I honestly have not had so much energy and mental clarity since Feb.

Still have a long list of other supplements I need to introduce like Omega-3 and TMG.

But today I worked a full day, did a short exercise, and did not feel like dying walking in the sun.

EDIT:

Thanks for the suggestion that it’s a bit too early to celebrate. I’ve been feeling impatient about getting better so I jumped the gun. The second day I felt amazing but also had insomnia 🤷🏻‍♀️

TLDR;

Taking Thornes Basic B Complex seemed at first to trigger a flare (dizziness, buzzy feeling due to activated nervous system). Taking Vitamin C eased the symptoms and a day later I felt energized.

From here I’ll go down to taking a sprinkle of basic B complex and titrate slowly up to manage and monitor symptoms over the next two months or so.

Then I’ll report back.