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All the things that worked, and some questions

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I guess I've had MCAS my whole life, but it started getting worse about 4 years ago. constant rashes, GI issues, headaches but it was manageable. I got Covid 1 year ago and it got really bad. After Covid I had such a strong brain fog for 2 months that I didn't dare to drive my car, there were moments when I felt like I couldn't form sentences from words. POTS first appeared after Covid. It caused the worst fainting spells of my life. Allegra, famotidine and quercetin saved me. About 40-50% symptom relief, thanks to which I was able to keep my job. The next discovery was the Thymosin alpha 1 peptide. It calms my immune system, and after two months of use I can eat a surprisingly wide range of foods without reactions. The two most disturbing symptoms that I can't deal with are: low libido (since Covid) and numbness in certain areas of my body. (MS has been ruled out with MR). My last attempt was ketotifen. I had surprisingly good experiences: In the initial period (I took 0.250 mg before bed) it gave me energy and reduced my MCAS reactions. One of the most interesting things is that since I have been suffering from MCAS I have been constantly insulin resistant, sometimes better, sometimes worse, and with ketotifen my blood sugar started to stabilizes, after 2 weeks of taking it. It had a slight depressive effect, but it was tolerable. What made me stop was the panic attacks. I started having them out of nowhere, they became completely unmanageable after a while. I suspect it has something to do with coffee, so I am trying to quit caffeine now and try ketotifen again in a few weeks. My questions to the other sufferers: 1. Has a bad MCAS flair caused neuropathy for you, and if so, is there any good advice? or does this fall under the good old longcovid umbrella? 2. Have you experienced a decrease in libido after a major flair, or is this also longcovid? 3. Has ketotifen caused panic attacks or caffeine sensitivity for you? 4. If nothing works I will try luteolin or LDN. I also plan to have a full blood test for VitD B12-6-9-1, magnesium, zinc, copper, iron ferritin. Did you have any success with these? Thank you!

Details

Subreddit
r/MCAS
Posted
Feb 12, 2026 at 10:53 PM UTC
LeadScore: 25question

AI Analysis

Condition
mast cell activation syndrome (MCAS), POTS, neuropathy/numbness, low libido, post-COVID / long COVID, insulin resistance, brain fog, GI issues, rashes, headaches
Geography
us likely