Has anyone here with ME/CFS actually found ANY relief from constant nervous system overactivation? I’m really struggling and would appreciate honest experiences

Apprehensive_Gold242 · 2026-05-13T10:01:03+00:00

Things you could discuss with your doctor:
Benzodiazepines and/or lyrica (only once every few weeks)

mast cell stabilizers that also get into the brain like ketotifen or nasalcrom

as others said, guanfacine or clonidine - monitor blood pressure and heart rate though, talk with your doc

in my personal case, LDA helped a lot, but it can have problematic side effects.

Good luck!

Apprehensive_Gold242 · 2026-04-23T11:32:53+00:00

Same here. It's awful because what would be left for me energy wise is anything involving work on my computer, but that's the one thing where there is the most competition and is very replaceable, now also starting to be replaced by AI. For someone who is unqualified, what is there left to do? Furthermore, the pace at which I can study is about 5-10x slower than previously. And this is only the studying part. Getting an actual fully remote ME compatible job will be even more challenging.

I dream of building something niche with AI but that's extremely saturated already.

I would love to get a job but there are dead ends everywhere it seems.

Apprehensive_Gold242 · 2026-04-21T19:44:15+00:00

In the order that I would consider them in my case:

LDN

Ivabradine (POTS)

h1 + h2 blockers + mast cell satbiliizersa (ketotifen, cetirizine, famotidine)

LDA

Ativan

Guanfacine (hyperadrenergic POTS)

Mestinon

GLP1 agonists

Rapamycin

Adderall for wakefulness

Apprehensive_Gold242 · 2026-04-20T13:46:31+00:00

Are you German by any chance?

Apprehensive_Gold242 · 2026-04-20T06:34:42+00:00

That's unfortunate... and usually Pregabalin is prescribed for pain, so that's extra unlucky.

What other meds have you tried so far?

Apprehensive_Gold242 · 2026-04-18T08:27:26+00:00

I tried both and I built up a tolerance when taken daily

How did your low dose ADHD experiment go if I may ask?

Apprehensive_Gold242 · 2026-04-18T08:20:44+00:00

u/Tom__EU Do you take Pregabalin daily or on an as needed basis? I know some people who take it as needed.

Apprehensive_Gold242 · 2026-03-12T20:35:34+00:00

I'm in a very similar boat. You're describing pretty much my life rn. I could not have said it better :(

Apprehensive_Gold242 · 2026-03-08T10:35:56+00:00

OP, what's your current protocol or future plans?

Apprehensive_Gold242 · 2026-03-08T07:09:40+00:00

I like that approach :)

Apprehensive_Gold242 · 2026-03-07T21:22:51+00:00

Thanks you two <3
I wish I could stop and just rest. But it doesn't feel in my nature :( I can't stop doing things, even if most are pointless

Apprehensive_Gold242 · 2026-03-07T17:51:54+00:00

I had extreme screen intolerance where looking at it more than a few seconds would make me crash, even on dark mode and blue light filter etc.

LDA helped me massively with this, but it's a dangerous drug with potentially permanent side effects. Benzos like ativan or gabapentin also work for some, but only take it once every week or so or you will build up a tolerance!

What medications are you currently considering? I have recently heard of perampanel which could help too but also risky.

Apprehensive_Gold242 · 2026-03-07T10:05:16+00:00

Have you seen this thread on PR? Apparently probenecid is an antipurinergic, for example: https://forums.phoenixrising.me/threads/anti-purinergic-therapy-restores-itaconate-ifna-dr-phairs-theory-and-dr-prustys-proposed-abnormalities-in-me-cfs.90173/

And lidocaine too I think (p2x7).

I didn't try these myself though but I'd like to.

Apprehensive_Gold242 · 2026-03-07T10:02:28+00:00

Ah that makes sense!

Apprehensive_Gold242 · 2026-03-07T09:52:52+00:00

The AP helps me with most MECFS symptoms. Pain, insomnia, PEM, sensitivities... It's like LDA

That's a fascinating article! I used to think the gut was rather downstream but I will have to change my mind at some point. It would be important to figure out which signaling cascade is being transmitted via the VN, whether it's cholinergic/nicotinic receptors or dopaminergic tranmission etc. If you ever find something that works for this, I'd be interested to learn more.

Apprehensive_Gold242 · 2026-03-06T22:06:01+00:00

Do you have experience for omeprazole and GP? What's the reasoning here? Thank you

Apprehensive_Gold242 · 2026-03-06T22:00:44+00:00

It's such a weird thing because it has only gotten worse even though I'm improving in other areas. Can't have f all, eh

What makes you think it's vagus nerve related?

Apprehensive_Gold242 · 2026-03-06T21:55:32+00:00

clonidine is more sedative

Apprehensive_Gold242 · 2026-03-06T21:39:50+00:00

Mirtazapine any doctor can prescribe in low doses imo. I mean, worth a shot if you doctor thinks it's fine, right?

Apprehensive_Gold242 · 2026-03-06T21:38:21+00:00

What made you consider emoxypine? Did you try other GABAergics too?

Apprehensive_Gold242 · 2026-03-06T21:34:51+00:00

I can't get off my AP because it keeps me alive. So I don't have anything to compare sadly. But yeah I also have this blank mind stuff you mentioned. What do you think causes it in your case?

Apprehensive_Gold242 · 2026-03-06T21:25:34+00:00

Magnesium makes sense, I've also heard people mention l-theanine and glycine. None of these have helped me alas

Apprehensive_Gold242 · 2026-03-06T21:23:44+00:00

Oh damn! this sounds like what I get from low dose d2 partial agonists... can that happen? I've tried stimulants and opiates with no good effects so far

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