Short version:
I started antihistamines again and feel better DUH!
Months of misery provoked by self-inflicted med changes are always the most fun.
Story version, and sorry for all the little emojis, I'm feeling exuberant today and they break up the text:
So! A little over 3 years ago I was diagnosed with MCAS, along with a bunch of other stuff. But my brain was so messed up at the time it was literally all kind of a blur.
Literally.. the trip through the airport in a wheelchair with sunglasses and headphones on lives in my mind as psychedelic type experience.
Dr. K at Center for Complex Diseases prescribed a bunch of stuff including 3 etc antihistamines and Nueroprotek.
I started taking it all but I was So. Messed. Up. at the time - background noise level was so high from everything haywire at once- that I have no idea what supplement helped.
At one point I switched drs. and added compounded ketotifen too, although I could never tell if it helped either.
Then as dealt with SIBO... dysbiosis....more SIBO... I realized that ranitidine is an acid blocker and I don't really want to be blocking stomach acid. So I quit that.
Then after awhile I quit loratadine too and that didn't seem to have any effect.
I quit Neuroprotek also because it was So Expensive at recommended dosage. (6 caps/day= $4/day I think.)
I started taking powdered quercetin but it didn't seem to matter whether I took it or not so I quit after a while also.
Then last year I seemed to be getting better and I was So Tired of taking a million things. My adrenals seemed to be better said the test, so I slowly, over months and months, cut down on hydrocortisone.
then I got the bright idea of quitting the last antihistamine I was on- cetiritizne/ zyrtec.
and ALSO doing
- A kitchen remodel (VOCs!)
-AIP meal plan (bone broth! seafood! kraut!!! sardines!! mushrooms ! )
And then the kitchen remodel ended but it was winter which means Citrus Season so I piled on the citrus.
Yeah- in hindsight- histamine party.
Then got Moderna #1 and #2 and started to feel like every day was literally wading through cement.
In hindsight I don't know how much of the extreme fatigue that they seemed to cause was from them or from histamine overload- it doesn't matter really.
I finally realized that maybe histamine overload was a possibility. Took a zyrtec and felt energetic for the first time in MONTHS.
New batch of Neuroprotek arrived yesterday and last night I felt like I slept for the first time in MONTHS also.
So I guess I DO have MCAS just like Dr. K said I did, 3 years ago .
this whole illness and partial recovery has been a process of learning what different kinds of WRONG feel like in my body.
It's taken a while to figure this out because when I first got sick they were all happening at once and it's taken a long time to tease them apart ..... and I'm sure I'm not done yet.
Not enough B vitamins make me edgy, desperate, wired, painfully dry-eyed. Questioning my sanity.
At various times I noticed what a huge difference B6, P5P, and methyl B 12 make, in particular.
Messed up adrenals= can't sleep at night or wake in the morning, intense carb craving, brain fog
Unbalanced hormones= can't sleep, emotionally unbalanced
Methylation support, too much or too little; Wired/ depression
MCAS= everything hurts in a diffuse way; exhausted but don't get better with rest; too fatigued and too much pain to exercise; intense brain fog; moving and thinking in concrete. It's like someone took an etch-a-sketch to my nervous system. I literally feel like I need to rewire it with LOTS of yoga/ meditation/ breath work.
Once in a while I even feel tired from a little bit of walking or yoga (due to being badly reconditioned.) What a joy that is! I mean, it actually is a great feeling to feel tired from exertion instead of from mystery illness all the time.
Haven't I been seeing a dr. throughout all of this? Why yes, and I talked about all med changes with her. But... I see why people see different drs. for different things. The person I'm working with now is mostly a Lyme doc, I don't know how much she knows about MCAS. And also you never really know til you experiment. That's the fun of it.
I started antihistamines again and feel better DUH!
Months of misery provoked by self-inflicted med changes are always the most fun.
Story version, and sorry for all the little emojis, I'm feeling exuberant today and they break up the text:
So! A little over 3 years ago I was diagnosed with MCAS, along with a bunch of other stuff. But my brain was so messed up at the time it was literally all kind of a blur.
Literally.. the trip through the airport in a wheelchair with sunglasses and headphones on lives in my mind as psychedelic type experience.
Dr. K at Center for Complex Diseases prescribed a bunch of stuff including 3 etc antihistamines and Nueroprotek.
I started taking it all but I was So. Messed. Up. at the time - background noise level was so high from everything haywire at once- that I have no idea what supplement helped.
At one point I switched drs. and added compounded ketotifen too, although I could never tell if it helped either.
Then as dealt with SIBO... dysbiosis....more SIBO... I realized that ranitidine is an acid blocker and I don't really want to be blocking stomach acid. So I quit that.
Then after awhile I quit loratadine too and that didn't seem to have any effect.
I quit Neuroprotek also because it was So Expensive at recommended dosage. (6 caps/day= $4/day I think.)
I started taking powdered quercetin but it didn't seem to matter whether I took it or not so I quit after a while also.
Then last year I seemed to be getting better and I was So Tired of taking a million things. My adrenals seemed to be better said the test, so I slowly, over months and months, cut down on hydrocortisone.
then I got the bright idea of quitting the last antihistamine I was on- cetiritizne/ zyrtec.
and ALSO doing
- A kitchen remodel (VOCs!)
-AIP meal plan (bone broth! seafood! kraut!!! sardines!! mushrooms ! )
And then the kitchen remodel ended but it was winter which means Citrus Season so I piled on the citrus.
Yeah- in hindsight- histamine party.
Then got Moderna #1 and #2 and started to feel like every day was literally wading through cement.
In hindsight I don't know how much of the extreme fatigue that they seemed to cause was from them or from histamine overload- it doesn't matter really.
I finally realized that maybe histamine overload was a possibility. Took a zyrtec and felt energetic for the first time in MONTHS.
New batch of Neuroprotek arrived yesterday and last night I felt like I slept for the first time in MONTHS also.
So I guess I DO have MCAS just like Dr. K said I did, 3 years ago .
this whole illness and partial recovery has been a process of learning what different kinds of WRONG feel like in my body.
It's taken a while to figure this out because when I first got sick they were all happening at once and it's taken a long time to tease them apart ..... and I'm sure I'm not done yet.
Not enough B vitamins make me edgy, desperate, wired, painfully dry-eyed. Questioning my sanity.
At various times I noticed what a huge difference B6, P5P, and methyl B 12 make, in particular.
Messed up adrenals= can't sleep at night or wake in the morning, intense carb craving, brain fog
Unbalanced hormones= can't sleep, emotionally unbalanced
Methylation support, too much or too little; Wired/ depression
MCAS= everything hurts in a diffuse way; exhausted but don't get better with rest; too fatigued and too much pain to exercise; intense brain fog; moving and thinking in concrete. It's like someone took an etch-a-sketch to my nervous system. I literally feel like I need to rewire it with LOTS of yoga/ meditation/ breath work.
Once in a while I even feel tired from a little bit of walking or yoga (due to being badly reconditioned.) What a joy that is!
I mean, it actually is a great feeling to feel tired from exertion instead of from mystery illness all the time. Haven't I been seeing a dr. throughout all of this? Why yes, and I talked about all med changes with her. But... I see why people see different drs. for different things. The person I'm working with now is mostly a Lyme doc, I don't know how much she knows about MCAS. And also you never really know til you experiment. That's the fun of it.
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