Surprise! MCAS

Short version:
I started antihistamines again and feel better DUH!
Months of misery provoked by self-inflicted med changes are always the most fun.:bang-head: :xpem::whistle:


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. :xeyes:

Literally.. the trip through the airport in a wheelchair with sunglasses and headphones on lives in my mind as psychedelic type experience. :sluggish:

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. :ill:

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.) :moneybag:

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. :nerd:

then I got the bright idea of quitting the last antihistamine I was on- cetiritizne/ zyrtec.

and ALSO doing
- A kitchen remodel (VOCs!) :balloons:
-AIP meal plan (bone broth! seafood! kraut!!! sardines!! mushrooms ! ) :balloons:

And then the kitchen remodel ended but it was winter which means Citrus Season so I piled on the citrus. :balloons:

Yeah- in hindsight- histamine party. :cake::(

Then got Moderna #1 and #2 and started to feel like every day was literally wading through cement. :meh:
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. :thumbsup:

New batch of Neuroprotek arrived yesterday and last night I felt like I slept for the first time in MONTHS also. :angel:

So I guess I DO have MCAS just like Dr. K said I did, 3 years ago . :rofl:

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.
Likes: GreenGrapes

Comments

I'm hearing more and more connections with Me/cfs
Mast cell activation,lyme and mold.

Part of me believes this may be a reason why there may never be a universal cure as environment for many is an underrated part of the conditons
.
Congrats
 
I'm hearing more and more connections with Me/cfs
Mast cell activation,lyme and mold.

Part of me believes this may be a reason why there may never be a universal cure as environment for many is an underrated part of the conditons
.
Congrats
I was just reading a website about CAUSES OF MOLD (and environmental sensitivity). Basically... Do you live in a HOUSE? Then you're surrounded.
 
Hey Cedar,

I recently found out that anti histamines got me into a good place and I actually felt a lot stronger. Until I had a 30 minute nosebleed which I am sure was due to too much anti histamine.

I was taking 3 seperate anti histamines (1 tablet each) per day. What are you taking? My mother takes Allegra and I am considering getting that from my GP as a more long term solution. As I am convinced she has undiagnsed MCAS.

@CedarHome

Thanks
 
Hey Cedar,

I recently found out that anti histamines got me into a good place and I actually felt a lot stronger. Until I had a 30 minute nosebleed which I am sure was due to too much anti histamine.

I was taking 3 seperate anti histamines (1 tablet each) per day. What are you taking? My mother takes Allegra and I am considering getting that from my GP as a more long term solution. As I am convinced she has undiagnsed MCAS.

@CedarHome

Thanks
Hi there, when I was first diagnosed, Dr said to take 3 over the counter: Ranitidine (also an acid blocker and since taken off the market); Loratadine; and cetirizine. Also to take a thing called "Neuroprotek" sold here https://algonot.com/product/neuroprotek/
(very expensive as I've mentioned about a million times.)

Later another dr. had me take ketotifen (compounded) and quercetin as a powder (quercetin is also in Neuroprotek.)

After a while, a year or so, I slowly stopped the ranitidine (a priority because I didn't want to be taking an acid blocker) and the loratadine. I didn't notice any immediate effect. I never noticed an immediate effect from the ketotifen either.

I think the challenge is that the histamine bucket fills up slowly and is so heavily affected by food, mold, probably other things too. Trying to figure out the right dose of antihistamines is probably trial and error, possibly as you found with your nosebleed, yikes!!

I'm still very much learning about histamine intolerance vs. MCAS, there's a difference but I can't remember what. I'm not sure if I have both.

My inclination personally is to consider food as a huge part of the equation. Fewer drugs has to be better and if I can remove histamines from my diet and be more functional, without additional meds, then it's worth it, right? :nerd:

Have you ever noticed how everything delicious is absolutely dripping with histamine?! :bang-head:
 
Hey,

Thanks for the reply! :)

I'll checkout these products tomorrow. There's another one in the UK that's recommended pre pollen season too but it's too late to that. I forget the name.

As for diet haha you're right! Ive been allergic to fruit since I was 15 though and I eradicated gluten dairy and sugar plus caffiene and alcohol in sept 2018. So that's covered. I've recently rejigged my diet a bit too. It all helps!

But even with that the country air is killing me. My doctor is calling me tomorrow tho so I'm hoping that they will have some ideas.

I'll checkout the above tomorrow tho. Thank you!! :)
 

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