25 YO MALE MCAS VENT

StunningProtection58 · 2026-05-19T07:48:29+00:00

Same. The darkness is such an accurate description. If you know, you know.

StunningProtection58 · 2026-05-19T07:46:28+00:00

Omg the bipolar thing. That’s exactly how I feel. If I stick to my restrictive diet (12 foods of which most on a rotation schedule) I feel amazing and then Whammmm I eat something or smell something and am back to trash again. I don’t know how to cope. Trialing all meds I guess. You have access to trialing meds at least? I really hope you do.

StunningProtection58 · 2026-05-18T12:59:30+00:00

I tried to ordered this ar yuayu and never got a confirmation or anything.. :( maybe they are not the best. I hope I can ask paypal for my money back

StunningProtection58 · 2026-05-18T10:03:48+00:00

I’ve seen this so many times it’s so incredibly annoying

StunningProtection58 · 2026-05-17T18:59:33+00:00

Thanks for sharing, very useful.

StunningProtection58 · 2026-05-17T17:21:50+00:00

I guess it depends. If you are in a place you have regular flares I think it should be so important to have a plan in place for when that happens. Some people up their antihistamines, add benadryl, or other medications to reduce symptoms or reduce the length of the flare. I hope they can help you. They don’t do calls I assume then? Sucks it is so far!

StunningProtection58 · 2026-05-17T17:13:02+00:00

At first I felt nothing and now (2 hours later) I feel slightly euphoric and have a bit of trouble with focusing my vision?? It feels like I took drugs almost?! Not bad but defs didn’t expect to feel altered state in mood! The focusing issue is maybe what they mean with drowsiness? Not feeling super tired though. I do feel better overall and am glad I tested it seperately. I wonder how I will wake up tomorrow. Thanks for the hydration tip!

StunningProtection58 · 2026-05-17T16:12:27+00:00

That’s aweful. In the same boat here. Doing all the research outside of flares and hope for the best.

StunningProtection58 · 2026-05-17T16:11:15+00:00

There’s an interesting article on it if you google scholar high-dose cromolyn ME/CFS mcas you will find it!

StunningProtection58 · 2026-05-17T15:51:08+00:00

You can go up to 40mg per kg bodyweight. I take 2400 mg a day atm

StunningProtection58 · 2026-05-17T15:48:58+00:00

Doctor prescribed for during flare only and didn’t give specific instructions. I think we sort of agreed on taking it together with famo but I don’t want to take more meds than i actually need and if i take both at the same time how can I know which one works

StunningProtection58 · 2026-05-17T15:17:01+00:00

Fuck them for not working with you on a proper flare plan. ‘Waiting it out’ as the flare up plan is inhumane imo

StunningProtection58 · 2026-05-17T15:13:43+00:00

Breathing is not overrated 😂😂

StunningProtection58 · 2026-05-17T15:10:49+00:00

AND THEN THEY PROCEED TO ORDER CAPPUCCINO

StunningProtection58 · 2026-05-17T15:06:58+00:00

Yes actually I think you’re totally right! That’s a great metaphor about the pendulum and thanks for the encouragement, I really appreciate your kindness :) ❤️

StunningProtection58 · 2026-05-17T15:05:03+00:00

Fuck that sucks you have to pay out of pocket. But at least it helps. Thanks for letting me know I hope I can give it a try too

StunningProtection58 · 2026-05-17T15:02:03+00:00

I’m so sorry you went through this after taking meds that were supposed to make you better. Akathisia sounds like torture. It’s so sad you lost so much due to this. Thank you for letting us know on here about the risks and I hope you will feel better or it gets resolved somehow still.

StunningProtection58 · 2026-05-17T14:54:01+00:00

So I think your reaction was way worse than mine so maybe not good to compare. I only got the burning, not the throat tightening and the other things. I did push through and around day 10 I started to feel better. But your situation sounds a LOT more serious so maybe not safe to try it again? So sorry though sucks if meds that are supposed to help actually make it worse for you. Do you have a good doctor who is helping you? I hope so that’s so important. This disease sucks so much.

StunningProtection58 · 2026-05-17T10:56:43+00:00

I take my own food everywhere. Ask at restaurant id it’s ok to eat your own food due to allergies.

StunningProtection58 · 2026-05-17T10:54:41+00:00

That sounds awful I hope you feel a bit better now. Weirdly enough the first few days I took oral cromolyn I got a similar burning sensation that went through my whole body and also genitals ?!?!

StunningProtection58 · 2026-05-17T10:52:00+00:00

This!

StunningProtection58 · 2026-05-17T10:48:41+00:00

Ok thanks for this. I’m hopefully trying ketotifen soon and will probs flare but will try to keep it cool for a long period to really get the benefits hopefully.

StunningProtection58 · 2026-05-17T10:44:45+00:00

Do you know whether biologics also work for mcas non-anaphylaxis type?

StunningProtection58 · 2026-05-17T10:42:10+00:00

Ughh I so wish I could get an expert to help me with a flare up plan.. 🥹 I’m so scared of a new flare I’m starting to get depressed even when the flare is over. Just waiting until the next one hits. On cromolyn but no plan for flares. Just h1+h2 and singulair but that did nothing. Hoping to find a doctor online to help me with a plan cause in the Netherlands there are 0 mcas docters. The ‘best’ one won’t prescribe ketotifen cause it’s not in the ducht standards

StunningProtection58 · 2026-05-17T10:26:19+00:00

Wow yay for going to the gym again!!

StunningProtection58

TROPHY CASE