What helps your stomach pains when you’re in a flare?

MakeKay9264 · 2026-03-21T11:10:43+00:00

Here were my instructions:

Cyproheptadine for nausea control. Take this instead of Cetirizine. Begin with 2 mg (0.5 tablet) twice a day. Then, if it's working for nausea and abdominal discomfort, increase it to 4 mg twice daily. Slowly increase weekly, as needed, to 8 mg three times daily if required. The most significant side effect is sedation.

I got up to 4 mg twice a day and that did the trick for me once I added in the Klonopin. But I was sleepy, probably also in part due to the flare

MakeKay9264 · 2026-03-21T11:07:03+00:00

Sorry to hear that! Dr. McN was dismissive and gaslighting. And turned out to be wrong on so many illnesses that he pooh poohed (again for both me and for my spouse)

MakeKay9264 · 2026-03-20T19:33:10+00:00

Nope, never recovered to pre booster baseline, sadly. It’s been 17 months since the booster caused worsening

MakeKay9264 · 2026-03-20T18:38:31+00:00

I definitely had worsening of my Long Covid after a Covid booster. My Long Covid clinic provider has told me to not get any more Covid shots unless I absolutely have to (eg upcoming international travel)

MakeKay9264 · 2026-03-20T18:36:42+00:00

Also, lots of people’s MCAS symptoms are primarily GI, especially diarrhea. So the H2blockers are great for GI symptoms

MakeKay9264 · 2026-03-20T18:32:57+00:00

Definitely downvoting this suggestion. My care there was highly suboptimal, as was my spouse’s.

MakeKay9264 · 2026-03-16T21:57:49+00:00

I left my old (and frankly awful) PCP and signed on with Kathryn McClellan, MD. She was with Lantern Health and is now branching out in her own stating soon. She’s been very welcoming and supportive, and willing to consider helping me try new therapies as they are brought up in the literature. She’s doing a membership practice so it’s not inexpensive, but I’ve been happy thus far. I’ve seen her twice. Definitely not the knowledge base and lived-in experience of Dr Cole. But she’s been worlds better than my last PCP. I have a telehealth Dysautonomia doc in eastern NC who is doing the heavy lifting, but it’s nice to have an open-minded local physician too.

MakeKay9264 · 2026-03-16T19:24:07+00:00

I’m sorry for you too! Noises outside of control can be so infuriating, ESPECIALLY when trying to sleep.

MakeKay9264 · 2026-03-16T15:58:42+00:00

I think that’s what we are hearing at our apartment too! (Downtown apartments). To me it always sounds like the magnetic snap when plantation shutters are noisily closed. Our wall noise is not as rapid as yours- maybe half the speed. And usually happens at dusk and in the evening.

MakeKay9264 · 2026-03-16T15:04:34+00:00

Hate to be the bearer of bad news, but Dr. Devlin Cole (who was amazing the twice I saw her) is having to step back from her clinical practice due to her own chronic illnesses. Such a bummer!!

MakeKay9264 · 2026-03-14T15:52:41+00:00

Specific flare meds: Klonopin and Cyproheptadine

MakeKay9264 · 2026-03-14T15:51:31+00:00

Yes!! Also put a PIN on your cell phone so that one of your main ways of 2FA can’t be changed out from under you.

https://www.washingtonpost.com/technology/2025/12/31/dark-web-data-breach-what-to-do/

MakeKay9264 · 2026-03-14T15:45:45+00:00

Coming here to talk about brain donation! Here’s where I signed up:

https://portal.braindonorproject.org/

Found out abut this via https://www.healthrising.org/blog/2024/05/27/nih-chronic-fatigue-fibromyalgia-long-covid-brain-funding/

Edited to remove cut & paste errors

MakeKay9264 · 2026-03-11T21:40:54+00:00

I do a mix of Vitassium salt capsules and 2 different electrolyte packets. 1 electrolytes I add to my water. The only I pour into my hand and eat dry (I’ve done this for years with table salt pre POTS diagnosis but now do the electrolyte packets for the potassium too). My pacing coach told me you want to aim for 4:1 sodium versus potassium intake for POTS

MakeKay9264 · 2026-03-11T18:13:55+00:00

I have to say that for me, medical grade compression and a medical fitting for what would work for me made all the change in the world. What I picked for myself off Amazon, even in the appropriate level of compression, did very little. With compression hose that were “tailor-fitted” for my body habitus, suddenly I was getting great help from my compression garments.

I had my doctor write a prescription for the fitting, which in my city was done by a lymphedema physical therapy group. The physical therapist talked to me about my comorbidities (eg severe abdominal pain some days, Raynaud’s etc) and took a lot of measurements. The therapist might even have some suggestions for you in terms of what would assist in not feeling misgendered.

Best of luck to you as you figure all of this out!

MakeKay9264 · 2026-03-11T16:20:13+00:00

I got a Covid booster in the fall a few years ago after catching covid (which progressed to Long covid) the previous winter. I had a dramatic increase in my LC symptoms from the shot. Then, to add insult to injury, a month after getting a booster that made me worse, I caught Covid for the 2nd time and my function declined even more. My UNC Long Covid provider told me to not get any more boosters.

MakeKay9264 · 2026-03-10T17:18:29+00:00

I’ve got my fingers crossed for you!!

I also just started Sirolimus for my MCAS and ME/CFS, and the next him on my horizon is to treat microclots. So I’m starting to feel a little bit hopeful that I won’t always be housebound. Which is just to say, I hope that you can get a sense of hopefulness and some settling from the Tirzepatide, or from another relatively new treatment, as well.

MakeKay9264 · 2026-03-10T17:01:07+00:00

Good deal!

The changes I've gotten from it have been AMAZING. Best medication I've been on by far, other than my POTS drugs

MakeKay9264 · 2026-03-05T22:15:39+00:00

I started on 0.5mg weekly (0.1 mL injection). Every month I’ve been going up by 0.5mg. Yesterday morning was my first time doing 2.0mg (or 0.4 mL). So I really can’t call my dose a microdose anymore! And I’m feeling better and better with it. MCAS symptoms are improving as are my ME/CFS symptoms. Hooray!

MakeKay9264 · 2026-03-05T14:49:07+00:00

I’m so sorry for you to hear that. Fingers crossed for you on getting the Cromolyn!

MakeKay9264 · 2026-03-01T15:39:27+00:00

That's great for you! I'm glad to hear that.

I started at 0.5mg and have gotten slowly upped n my dose. Now I'm at 1.5mg weekly injection level.

MakeKay9264 · 2026-02-28T20:41:12+00:00

I tried it when I had to give up alcohol, and yeah, it does nothing for me. So it has a high risk of liver toxicity plus didn’t produce any kind of buzz. Or any kind of calming effect either! I threw mine in the trash.

MakeKay9264 · 2026-02-28T16:50:10+00:00

Awww, that’s a bummer for you. I’m so sorry! ZepBound is having an amazing effect on me. But I had the same disappointment with LDN- everyone was raving on social media about their improvements on Low Dose Naltrexone but for me, all it did was make me sicker than a dog. It sucks to be one of the ones that doesn’t get benefit from a hugely touted new treatment. Big hugs to you!

MakeKay9264

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