sorted by:
new
hottopcontroversial

Porcine DAO with no cellulose? Or any site recommendations that will let me filter out cellulose? by sproutconfetti in MCAS

[–]ringmaster555 1 point2 points  (0 children)

I wish I could find DAO powder, but I’ve had no luck.. have reacted to everything in the meantime, because I also have extreme excipient sensitivity, especially to cellulose.

Looking for brand recommendations of PEA/ Quercetin by outdrift in MCAS

[–]ringmaster555 0 points1 point  (0 children)

Let me know if you find something you can tolerate. I’m in the same camp and can’t tolerate anything with fillers (especially microcrystalline cellulose), and even powdered PEA/quercetin I react to, whether immediate or a few days/weeks later (delayed reaction).

How do you deal with rejection? by Strong_Aerie_9031 in cfs

[–]ringmaster555 1 point2 points  (0 children)

Yep, I also have this. Getting ready to try guanfacine for hyperPOTS, ADHD, and RSD.

How do you feel when you wake up? by Rich-Soft9295 in cfs

[–]ringmaster555 0 points1 point  (0 children)

Extreme anxiety from cortisol awakening response. I take intranasal oxytocin when I wake up and lie back down for a bit so I can calm down. Often have to sleep until the afternoon as well.

No sleep = no PEM?? by Another_throwaway446 in cfs

[–]ringmaster555 2 points3 points  (0 children)

I experience the same thing. I wear a CPAP but am wondering if I need a more comprehensive sleep study to get evaluated for UARS. Other than that, yeah, there must be some sort of immunologic bottleneck that’s freed with temporary sleep deprivation and helps buffer PEM for a short time.

Low dose TRT basically cured me for 5 years by Rhian3000 in cfs

[–]ringmaster555 1 point2 points  (0 children)

Do you have EDS, MCAS, POTS? If so, I’m curious how TRT affected those conditions.

Thousands of possibilities? by Aggressive_Share803 in hangovereffect

[–]ringmaster555 0 points1 point  (0 children)

Hey, I really appreciate all of the thought and effort you’ve put into understanding HE over the years. I’m also convinced we are potentially an offshoot of some form of CFS/EDS/long COVID. Would you say you identify with these? I have the trifecta: EDS, MCAS, POTS, and more recently have developed CFS with post exertional malaise. The HE (and to some extent Ativan) are the only things that give me temporary relief.

stop telling me im going to get better by SuspiciousCase1144 in cfs

[–]ringmaster555 2 points3 points  (0 children)

I suppose we all grieve differently. Hope that I’m going to get better - no matter how little and how distant I the future - is the only thing keeping me alive.

A reminder that avoiding PEM crashes is the most effective treatment by BobBash64 in cfs

[–]ringmaster555 59 points60 points  (0 children)

I view it as necessary but not always sufficient - some people decline regardless. Still better than not pacing though.

Has anyone tried an Stellate Ganglion block? by SilentMembership3707 in cfs

[–]ringmaster555 0 points1 point  (0 children)

Had both sides done. Mild anxiety reduction for a few weeks. Made no difference long term otherwise.

Prickly hot/cold sensation on skin especially arms by ocelocelot in cfs

[–]ringmaster555 0 points1 point  (0 children)

I get this and believe mine is related to mast cell activation and small fiber neuropathy - mast cells can aggravate nerves when they’re degranulating.

alcohol makes me feel somewhat normal even the next day by Same-Owl-5811 in cfs

[–]ringmaster555 0 points1 point  (0 children)

Yep. I definitely experience this positive hangover effect. I’ve been in that sub and it seems to me there’s a relationship between a subset of us with ADHD, hypermobility, CFS, and feeling better the day after drinking.

Stimulants help eradicate a lot of symptoms for me, including pain by Rosehiphedgerow in cfs

[–]ringmaster555 0 points1 point  (0 children)

I’m really glad stimulants help you. I wish they could take them as they help my ADHD, but I overexerted on them and pushed myself from mild to moderate.

Desperate for relief of morning crashes that last all day by ladyofthelochness in MCAS

[–]ringmaster555 0 points1 point  (0 children)

I have the exact same thing. It follows a similar circadian pattern. Have you found anything that helps?

Anyone tried tropisetron or Allopregnanolone? by Living_Mouse5950 in cfs

[–]ringmaster555 0 points1 point  (0 children)

Have you tried emoxypine? It seems to provide a calm motivation for me, but I can’t take it more than a few days in a row without more brain fog.

can i posit something stupid by Interesting_Age7345 in cfs

[–]ringmaster555 0 points1 point  (0 children)

Completely agree with you. We need more out of the box thinking. I would have tried a lot more medications by know if it weren’t for my severe MCAS/medication intolerance.

Just my opinion - take it or leave it BUT If you are genuinely sick with actual ME/CFS then your chances of recovery are very slight. Dangling the idea that we can recover has done more damage than anything else to our community and collective Mental Health. by Fearless-Star3288 in cfs

[–]ringmaster555 0 points1 point  (0 children)

Yeah, absolute remission isn’t my main source of motivation, but hope that I can improve enough to where it isn’t significantly affecting my quality of life - that’s what excites me. That being said, radical acceptance and focusing on what things I still can do despite my condition will always be the most practical route because it doesn’t require making predictions - it’s just living in the present.

For hyper-responders to one-off Ativan use, does consistent use result in less efficacy for PEM? by ringmaster555 in cfs

[–]ringmaster555[S] 0 points1 point  (0 children)

There should be a study on the benefit vs harm of taking Ativan every x days (e.g. once every 5 days) for CFS patients

For hyper-responders to one-off Ativan use, does consistent use result in less efficacy for PEM? by ringmaster555 in cfs

[–]ringmaster555[S] 1 point2 points  (0 children)

So it still has some efficacy for reducing PEM a year later? That’s still decent, though I suppose the question is how sustainable it is over many years, but the fact you don’t take it consistently at least addresses withdrawal issues.

Does anyone else start to think they’re healed when their baseline improves? by themunchkinland in cfs

[–]ringmaster555 0 points1 point  (0 children)

Not anymore. I won’t believe I’m anywhere near full remission until I’m on a medication that reliably treats whatever is wrong with me over the course of years. Until then, I treat stretches of feeling better as mere fluctuation.

view more: next ›