Comment on My brain fog makes me feel so stupid that I'm seriously considering trying speed
SoleInvictus@lemmy.blahaj.zone 1 week ago
Have you looked into mast cell activation disorder/syndrome (MCAD/MCAS) at all? I also have EDS (hypermobile type, hEDS) plus MCAS, which is a common comorbidity. I don’t have POTS, luckily. Tackling MCAS issues was what got rid of my brain fog and vastly improved my EDS issues. I’m actually reversing my joint hypermobility. It’s wild.
I’m full of info if you have any questions. Us chronic pain, incurable types gotta stick together.
Talonflame@lemmy.cafe 1 week ago
I have, but doctors don’t suspect it. I find my brain fog correlates to episodes of bad circulation/low blood volume, in that it gets worse whenever my blood volume or circulation is low/bad. How did they diagnose you with MCAS and is it easily treatable? Thanks
SoleInvictus@lemmy.blahaj.zone 1 week ago
I’m not going to lie: it’s a pain in the ass to diagnose and treat because it manifests differently between people. Even the lab tests aren’t reliable. I was diagnosed due to the fact the treatments (antihistamines and mast cell stabilizers) improved my CFS, EDS, brain fog, dysautonomia, “fun” GI issues, and anaphylactoid episodes.
My issues are certain foods and stress. If I consume too much alcohol, wheat or sugar, if I stop eating dairy then start again, and/or I experience extended bouts of intense physical and/or psychological stress, my EDS pain increases, blood flow to my extremities decreases (cold hands and feet like crazy), my GI tract goes haywire, I feel cold constantly even when I’m truly hot, I’ll develop rashes and eczema, and I’ll start experiencing CFS and random bouts of brain fog. If it goes on long enough or intensely for a short time (e.g., I eat an entire cake), I’ll have anaphylactoid episodes - not full anaphylaxis, but a lesser version that feels like a random, intense panic attack with no trigger. I was actually “diagnosed” with a panic disorder early on. Xanax just made me feel calmer while my body kept freaking out.
I first was clued into it because I noticed my symptoms were better when I took cetirizine, an antihistamine, and intensified when I stopped. My doctor had me try cromolyn sodium and, a few weeks later, my GI symptoms had vastly improved and the remaining symptoms were better. We’ve since tacked on a few more meds and I underwent a lot of therapy to get my stress levels down. Now I’m stable, where before I could barely function at work or at home.
Ledericas@lemm.ee 1 week ago
MCAS is very rare, and you dont show any symptoms of it, especially they look at your blood cells for abnormalities too.
Talonflame@lemmy.cafe 1 week ago
I’ve had so many blood tests done when they were trying to figure out what was wrong with me pre POTS/EDS/CFS diagnosis