I know what you mean; I just can’t get comfortable with taking it…. If I wasn’t so sensitive to medication, then maybe. I know there are at least two folks (?) on Connect who said they had a positive experience, but they didn’t share much about whether or not they experienced side effects and what it was like starting the med. I prefer to have context and at least something from someone who’s taken it for a similar condition… =\. Having a physician say it’s “generally well tolerated” does not help me especially since I’ve been told that before only to have unusual side effects that surprised my doctors, sigh. And that was before I knew I had central sensitivity so it’s less likely it was the no-cebo effect.

I’m not too bothered that it’s not proven, because there is zero approved medication or treatment for Long COVID as it is. Everything is off-label use, and off-label use of medications is pretty common with these types of chronic conditions. The treatments that are being used are being extrapolated from those used for central sensitization, POTS, ME/CFS, etc. If I have any edge here, it’s that I have two of the three above diagnoses haha so at least the conceptual frameworks for treatment aren’t foreign to me (I have to laugh because I never thought it would “come in handy” to know about these things, at least not for yet another illness).

Anyway, what I was going to say is, not sure if you saw, but there was a more recent article I found about amantadine for long COVID : https://www.nature.com/articles/s41598-024-51904-z#:~:text=In%20this%20study%2C%20we%20report,treatment%20for%20this%20persistent%20condition.

My other neurologist and NP are familiar with it for MS-related fatigue, so it seems there’s a precendent.

Others I know who have fatigue related to POTS or chronic fatigue syndrome use Ritalin or guanfacine, which were approved for ADHD. Guanfacine is used off-label for traumatic brain injury. So it seems like the safety profile and rationale is fairly well-established.

I just want to know if anyone taking it for long COVID or any of the above symptoms has experienced side effects (!!!) and if so what kind, what was the experience starting, and how long did it take to resolve. (Not yelling at you, just frustrated. It’s like writing a review for a restaurant and saying the food is good but not mentioning what you ate…key information I need to move forward because of the way my brain is wired >_< .)

I’ve not tried the long COVID Zoom, but I should. My gynecologist has long COVID and is on the long COVID team. I think she’s the only one on the team who actually has long COVID, and she said it was a good conversation.

Not sure if you also have brain fog, but I joined a clinical trial at Shirley Ryan AbilityLab for brain fog. They’re still accepting participants.

Wishing you fortitude…