Read on Twitter
The Big #MCAS Thread.
Ancient MCAS overview thread, what it is and what it does and what it looks like.
Note that this focuses mainly on *reactive* MCAS. Sometimes MCAS symptoms present less as reactions and more randomly or permanently. https://twitter.com/disabilisaur/status/841776262821507073
Note that this focuses mainly on *reactive* MCAS. Sometimes MCAS symptoms present less as reactions and more randomly or permanently. https://twitter.com/disabilisaur/status/841776262821507073
A similar thread, but in German. https://twitter.com/disabilisaur/status/808687039780626432
My big MCAS Overview document.
This contains most of what I know about MCAS, but do feel free to ask me any further questions you have, such as "why does this happen" or "how does that work" or "is there any research on this". https://twitter.com/disabilisaur/status/983428193146277888
This contains most of what I know about MCAS, but do feel free to ask me any further questions you have, such as "why does this happen" or "how does that work" or "is there any research on this". https://twitter.com/disabilisaur/status/983428193146277888
the question "can xyz be a symptom of MCAS?" is pretty much always answered with yes.
the question "is abc a required symptom for MCAS?" is always answered with no.
the thing with MCAS is that every. single. case. looks different. everyone has different symptoms.
the question "is abc a required symptom for MCAS?" is always answered with no.
the thing with MCAS is that every. single. case. looks different. everyone has different symptoms.
Something about hormonal birth control, also relevant for people on HRT. https://twitter.com/disabilisaur/status/926840425851359233
A short thread where I listed things that helped me, but really in the Overview Document you'll find better info on that. https://twitter.com/disabilisaur/status/956624560543199232
Some thoughts about fibro, ME/CFS and MCAS. https://twitter.com/disabilisaur/status/982002453238468609
Some thoughts about MCAS and "psychosomatic" illnesses. https://twitter.com/disabilisaur/status/982584393331068928
A few words on the clusterfuck that MCAS, fibro, ME, Lyme & mitochondrial disease are, includes links to diagnostic criteria for fibro & ME https://twitter.com/disabilisaur/status/974653885796290561
short version for DIY medication:
(make sure you know what you're doing, consider med interactions, your illnesses & allergies)
each of these may or may not work or you may be allergic:
- h1 antihistamines (cetirizine, loratadine)
- h2 antihistamines (ranitidine)
- aspirin
(make sure you know what you're doing, consider med interactions, your illnesses & allergies)
each of these may or may not work or you may be allergic:
- h1 antihistamines (cetirizine, loratadine)
- h2 antihistamines (ranitidine)
- aspirin
- supplements with mast cell inhibiting properties, most notably quercetin
more supplements on this list: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764846/table/tbl1/
more supplements on this list: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764846/table/tbl1/
keep in mind that meds don't necessarily help stop a reaction, but may help prevent it
Also: if you find you react to the vast majority of medications,
consider that you may not be reacting to the active ingredients at all
but rather to the substances that make the pills & tablets.
if you can figure out which substances, you can get safe meds compounded.
consider that you may not be reacting to the active ingredients at all
but rather to the substances that make the pills & tablets.
if you can figure out which substances, you can get safe meds compounded.
some words on diagnosis & blood tests
and why "I've been tested for that" is often... well, sadly not true. https://twitter.com/disabilisaur/status/991314217734197248?s=19
and why "I've been tested for that" is often... well, sadly not true. https://twitter.com/disabilisaur/status/991314217734197248?s=19
MCAS IS NOT ALWAYS REACTIVE.
(or not MAINLY reactive.)
it can totally leave you feeling like shit all the time, or in random episodes.
(or not MAINLY reactive.)
it can totally leave you feeling like shit all the time, or in random episodes.
the "Constitutional Symptom" of MCAS is just feeling like shit for no discernible reasons.
it can cause intense fatigue, dizziness, lightheadedness, pain, shortness of breath, headaches, migraines, digestive issues, neurological weirdness & much more.
it can cause intense fatigue, dizziness, lightheadedness, pain, shortness of breath, headaches, migraines, digestive issues, neurological weirdness & much more.
and you do not necessarily notice that this is in reaction to specific exposure, even if it is (but it doesn't have to be).
Also I totally forgot to link the thread about the book here. https://twitter.com/disabilisaur/status/977952524299890689?s=19
darn, I'll probably have to redo this thread sometime because now it's all out of order and chaotic.
I also have a video
but it's in German and I'm really desperately looking for someone who can translate the subtitles into English because i physically can't do so much work on the computer
but it's in German and I'm really desperately looking for someone who can translate the subtitles into English because i physically can't do so much work on the computer
Also good thoughts by @alexhaagaard on sleep & mcas.
(but do keep in mind DPH is not the only anticholinergic antihistamine, as some folks react to DPH too, like me hi) https://twitter.com/alexhaagaard/status/992421917457084419?s=19
(but do keep in mind DPH is not the only anticholinergic antihistamine, as some folks react to DPH too, like me hi) https://twitter.com/alexhaagaard/status/992421917457084419?s=19
thoughts on "curing" symptoms by changing one's diet & what that could have to do with MCAS https://twitter.com/disabilisaur/status/1000708467420745728?s=19
just dumping a link https://www.nature.com/articles/ng.3696
one more thing that could explain those symptoms and may or may not be related https://twitter.com/oceana1009/status/1135969675957940225?s=19
and another thing to consider https://twitter.com/alexhaagaard/status/1133133544904155137?s=19
I really need to redo this thread ugh.
one more thing to throw in the pot:
I tried MSM (Methylsulfonylmethane, another supplement), it has notably improved my mast cell stuff. there's not much in the way of scientific evidence, it's not well researched, works for me but YMMV
one more thing to throw in the pot:
I tried MSM (Methylsulfonylmethane, another supplement), it has notably improved my mast cell stuff. there's not much in the way of scientific evidence, it's not well researched, works for me but YMMV
options for dealing with some of the muscle symptoms (excessive lactic acid buildup): https://twitter.com/alexhaagaard/status/1284541457886580739?s=19
