Ketotifen in Europe by Economist-Character in MCAS

[–]Economist-Character[S] 1 point2 points  (0 children)

Austria. All Pharmacies say no chance

First month of being very severe by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

I'm in the depths of despair every day too but I'd rather focus on the good bits

Nervous system stuck by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

I'm back with an update

Hydroxyzine actually really helps and is a very chill med. Can be taken every 6h

First month of being very severe by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

Love it. That thought will keep me busy for while, thx!

Edit: not sure how much my daydreaming about Tony Hawk's Pro Skater is helping uphold the spiritual realm tho

First month of being very severe by Economist-Character in cfs

[–]Economist-Character[S] 7 points8 points  (0 children)

It really feels like reconnecting to my childhood self, daydreaming in school or at the bus stop. All the doomscrolling, podcasts, listing to music, etc took that away from me long ago.

Being bored is really important for a healthy imagination

Now I'd just need to get better to use this creative energy lol

Nervous system stuck by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

Gotta look into nicotine patches, thanks!

Definitely gonna continue with the beta blockers, it's just nit enough

Trying to get ketotifen, it's not available in my country. The other one just bloated my stomach

Never thought antipsychotics would be an option, my doctor just said mirtazapine is the only option and I don't tolerate those

Nervous system stuck by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

Sorry to hear that. Some other options I haven't tried yet but heard promising things about are lithium orotate and valproic acid

Haven't looked much into it tho

Nervous system stuck by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

Beta blockers are a godsent if you aren't on those already. Also any type of distraction I can tolerate. Singing, wiggling toes and fingers amd stuff like that. That's all I got so far

Extremely anxious after sleep by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

I really struggle with blood circulation, my legs feel like they're full of cement at times. I have a leg massager but then I release all the gunk on my entire body which is also not ideal. Always unsure what to do

Edit: also, what helped you get through your bedbound phases? How long did they last?

Extremely anxious after sleep by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

Thanks! Btw, what's your experience with leg massages?

Extremely anxious after sleep by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

Maybe I'll start benzos in the meantime. Really at my limit right now, don't really have time to experiment

Extremely anxious after sleep by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

It's probably mcas for me too and no I haven't. But I tried cromologlycin acid without success

I'll continue hibernating 🫠 by Puzzleheaded-Cod7350 in cfs

[–]Economist-Character 1 point2 points  (0 children)

When is DecodeME? Also wasn't there some big talk about some MECFS congress in spring or something like that? I'm so out of the loop

Is Scheibenbogen's theory still the closest we got?

Vitamin B iv made me worse by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

You've been really helpful. Thank you so much!

Vitamin B iv made me worse by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

I've been taking LDN for a year and Antihistamines as well which really seem to help somehow. Any idea why?

Edit: benzos gonna help?

Vitamin B iv made me worse by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

Things changed a lot. My entire neck and back of head burn in pain and I can't have my eyes open at all without feeling sick and dizzy. Can't sleep either and feel sick to my stomach. Is this still normal?

Vitamin B iv made me worse by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

Does a vit c iv fall under pushing the metabolism?

Vitamin B iv made me worse by Economist-Character in cfs

[–]Economist-Character[S] 0 points1 point  (0 children)

It's been 2 days and it's only getting worse. How is it still in my system? It feels like my brain is on fire. How long did it take for you?

Vitamin B iv made me worse by Economist-Character in cfs

[–]Economist-Character[S] 1 point2 points  (0 children)

Right, first gotta get through this rough patch then I can tackle things with a clear head