Is MCAS worse when we crash?

[Norwegianlad]

I recently started having pretty big MCAS symptoms. I never knew about MCAS and now realise I have been having some MCAS symptoms most of my life, but way way less.

Now it got pretty extreme and hard to handle, is it worse in a crash for you guys? I think I might also crashed.

Also it seems to have taken me from more vasoconstriction in general to way over dilation.

What is the first thing I should try to fight it?

 

[linusbert]

What is the first thing I should try to fight it?

check your food.
throw out plastics.
this year they changed something. every new noodle package i open no matter the vendor smells like something weird, parfume and other stuff, its in the noodles.
also they changed the plastics.

potatoes might be treated with stuff.
eggs might be in a packaging of extra co2 friendly ultra recycled materials which gets carried over to the egg and trigger something.
i am desperate with this shit. its everywhere.

even your supplements could be suffering from new dirty processing. i noticed supplements i took for long suddenly becoming problematic from one batch to the other. while the old batch still was fine. so its 100% them, not me.

they are trying bio plastics now too. that must be the worst idea people could come up with.. making plastics from materials which many people are allergic too. rapeseed oil, sunflower oil etc... and now you got that stuff in your packacking or whatever.

 

[Norwegianlad]

check your food.
throw out plastics.
this year they changed something. every new noodle package i open no matter the vendor smells like something weird, parfume and other stuff, its in the noodles.
also they changed the plastics.

potatoes might be treated with stuff.
eggs might be in a packaging of extra co2 friendly ultra recycled materials which gets carried over to the egg and trigger something.
i am desperate with this shit. its everywhere.

even your supplements could be suffering from new dirty processing. i noticed supplements i took for long suddenly becoming problematic from one batch to the other. while the old batch still was fine. so its 100% them, not me.

they are trying bio plastics now too. that must be the worst idea people could come up with.. making plastics from materials which many people are allergic too. rapeseed oil, sunflower oil etc... and now you got that stuff in your packacking or whatever.

Are you on any meds for MCAS? Or supplements?

 

[linusbert]

right now i am not on much of anything. just takeing pioglitazon for diabetes. its supposed to be somewhat anti inflammatory to. and it helps with my main symptoms, gives more energy. but not sure it does anything for mcas. i actually was thinking that maybe it makes it worse. but no clue for that.

but if excess vasodilation is your theory, you might wanna try hydroxocobalamin, it binds with NO which might aid

 

[wabi-sabi]

I find that ME/CFS and MCAS form a vicious circle and make each other worse.

No food makes any difference to me. I don't have any food reactions. I react to temperature, light, scent, stress etc. If you can identify your triggers and get rid of them (like cleaning products with perfume for me) that will help a bit. What makes the most difference for me is medications, since I react to life itself.

 

[Violeta]

Hypoxia and hypoglycemia can cause mast cells to degranulate.

Perhaps a crash is due to hypoxia and glucose not getting to the cells.

This is a rather long video but I think this young man describes why this would happen.

 

[Violeta]

Actually, this video, part 2 to the video in my previous post, might have more about MCAS and how it's actually saving you from hypoxia and hypoglycemia.

 

[Norwegianlad]

right now i am not on much of anything. just takeing pioglitazon for diabetes. its supposed to be somewhat anti inflammatory to. and it helps with my main symptoms, gives more energy. but not sure it does anything for mcas. i actually was thinking that maybe it makes it worse. but no clue for that.

but if excess vasodilation is your theory, you might wanna try hydroxocobalamin, it binds with NO which might aid

Interesting! I will read up on this. I also read Aspirin can work for it.. My symptoms mostly are huge hot spots on body parts, like certain areas get burning hot with red skin. Lungs feel very hot too sometimes, feels very weird. And eyes..

 

[Norwegianlad]

I find that ME/CFS and MCAS form a vicious circle and make each other worse.

No food makes any difference to me. I don't have any food reactions. I react to temperature, light, scent, stress etc. If you can identify your triggers and get rid of them (like cleaning products with perfume for me) that will help a bit. What makes the most difference for me is medications, since I react to life itself.

Thanks! Which meds worked the best for you? I tried eating different foods too but didnt really notice any difference in symptoms. Yesterday I noticed it helped being in a cold room, symptoms significantly less, but was getting so cold that I had to start increasing the heat..

 

[Norwegianlad]

Hypoxia and hypoglycemia can cause mast cells to degranulate.

Perhaps a crash is due to hypoxia and glucose not getting to the cells.

This is a rather long video but I think this young man describes why this would happen.

Thanks, I'll watch them both. I read someone having good results with b1, which is used in glucose metabolism.. So might try that

 

[wabi-sabi]

Yesterday I noticed it helped being in a cold room, symptoms significantly less,

Yup, heat is sure one of my triggers too. Which makes showering quite hard. I love winter.

 

[linusbert]

Interesting! I will read up on this. I also read Aspirin can work for it.. My symptoms mostly are huge hot spots on body parts, like certain areas get burning hot with red skin. Lungs feel very hot too sometimes, feels very weird. And eyes..

maybe vitamin D might help too.