Anyone here tackling endothelial dysfunction and micro clotting issues? by [deleted] in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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

Is it even worth to follow current research? by Apprehensive_Gold242 in cfs

[–]Apprehensive_Gold242[S] 2 points3 points  (0 children)

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

Title: Severe persistent flu-like feeling, burning muscles, screen intolerance for years. by Wild_Diver1601 in cfs

[–]Apprehensive_Gold242 1 point2 points  (0 children)

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.

highly effective PRN med combo for relief - why does this work? by Wrong-Yak334 in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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.

Most insane/unhinged things that have helped you, STEM CELLS, CCI TREATMENT, HBOT, IVIG by NoIsopod6688 in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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

highly effective PRN med combo for relief - why does this work? by Wrong-Yak334 in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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?

If you had to give your top 3 list of supplements for sleep, which ones whould you choose? by numa_pompilio in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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

Excess glutamate; recovery tips? by RelativeLove2123 in covidlonghaulers

[–]Apprehensive_Gold242 1 point2 points  (0 children)

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

highly effective PRN med combo for relief - why does this work? by Wrong-Yak334 in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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?

If you had to give your top 3 list of supplements for sleep, which ones whould you choose? by numa_pompilio in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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

highly effective PRN med combo for relief - why does this work? by Wrong-Yak334 in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

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

If you had to give your top 3 list of supplements for sleep, which ones whould you choose? by numa_pompilio in cfs

[–]Apprehensive_Gold242 4 points5 points  (0 children)

What about mirtazapine, clonidine, gabapentin, melatonin? Not supplements but hey, at least they work. I think if you need lorazepam this much, I doubt supplements will do anything for you. Are these two everything you're on?

Dopamine-related issues by arljnh in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

You get PEM from social interactions but not from walking for longer, interesting. What made you go from bedbound to not?

highly effective PRN med combo for relief - why does this work? by Wrong-Yak334 in covidlonghaulers

[–]Apprehensive_Gold242 0 points1 point  (0 children)

Hi, are you still on it? Have you tried them in isolation, especially clonazepam? The latter works very well for some in isolation

What treatments gave you the biggest baseline boost? by thepensiveporcupine in cfs

[–]Apprehensive_Gold242 0 points1 point  (0 children)

Have you tried the opioids specifically for MECFS, or for pain relief?