Brain fog - ask your doctor about amantadine

I'm really curious too, as @ericy210 is the only person I've seen in this forum who's mentioned trying amantadine. But maybe those who get better no longer have need of the forum >_< .

I can tell you that it's worth asking your doctor about. The Long COVID Clinic at Northwestern Medicine in Chicago routinely prescribes it, and you can find published papers about it online.

I'm just really nervous about side effects because I'm very sensitive to medication, and I like to know what to expect so I can weigh pros/cons, but I can't find any others who've taken it for Long COVID or even for MS-related brain fog who've shared in more detail about their experience. My neurologist said it's something they use, but it might be more specialized since it's been used for MS-related brain fog.

I can and have asked my doctors of course, but they always say something to the effect of: "It's a low dose, and it's generally well-tolerated, or side effects are short-lived," but they always say that, and it hasn't been true in my situation in many cases, so I get frustrated. Then, "The only way to know is to try," true. But if I'm going to try, I want at lease some semblance of an idea of what to expect. Sigh.

I missed this conversation. I have somewhat different neurological issues affecting my hearing and eyesight. I suppose I have some “brain fog” as well. It’s hard for me to say. I have been focused on my health problems for the last couple years, and not really doing anything normal.
I’m curious if you are still on this therapy and how you have (hopefully) continued to recover.

I know this was from a while ago, but I hope you're doing well! I just saw a neurologist in the long COVID clinic at Northwestern, and he also suggested amantadine, so of course I went Googling, and I landed here.

If you're still checking this, do you mind sharing how you're doing now, if you're still taking the medication, and if you experienced side effects?

I have co-occuring conditions that got worse with COVID; those conditions make it difficult for me to tolerate medication, so I'm nervous about it.

Also...anyone else following this conversation, there's new research from an open-label study about amantadine for post-COVID fatigue: https://www.nature.com/articles/s41598-024-51904-z

I’ve been taking Amantadine for a couple of months. I really think it’s helping me!

Thanks for the article. I just replied in this thread to a related question. I don’t believe I suffered side effects. I as feeling so bad before starting with it. But I also tolerate medicine pretty well.
At this point, I don’t know what would happen if I tapered off from it. There’s no research, according to my neuro. Until I see some good data, I’ll stick with it, along with other meds I’m on.

Hello. @emo addd as well. I had Covid April 2022. The Northwestern neurologist working on long Covid decided to try amantadine. It helps brain neurons reconnect, which made sense. I probably started in June. Within a week, people said my whole appearance and behavior changed for the better. In October 2022, I found myself slipping and he doubled the dose. I saw him summer 2024 and he said there’s no research to suggest I keep using it, increase dosage, or stop. I’m afraid to stop.
In December 2023 I caught Covid again. I got the week long paxlovid and that made me feel great. Brain fog was lifted- I could play guitar again and do well at work.
I started to decline again in July. I got into the clinical trial and wrapped up three weeks of paxlovid last week. I felt great when I was on it. Now I feel a bit crappy.
There’s a new drug approved for long Covid trial that seems to work like amantadine.
https://www.biospace.com/press-releases/biovie-announces-fda-authorization-of-investigational-new-drug-application-for-phase-2-trial-to-evaluate-bezisterim-in-long-covid

Thanks for the reply. I really appreciate it, and I'm glad it helped you.

That's kind of odd your neuro said there wasn't any research (but maybe this was earlier on) because they told me they're prescribing it specifically because there's some limited research demonstrating a benefit. I had asked about a case report from Stanford where they used 600 mg NAC (a supplement) and 2 mg guanfacine, which is a non-stimulant medication for ADHD, and the Northwestern team said they wouldn't prescribe that because there's more research supporting use of amantadine.

At any rate, glad it helped you. I'm going to start a clinical trial in November for long COVID brain fog, so maybe after that's over if I don't have a benefit, I'll circle back to them to try the amantadine...

In reply to @emo @ericy210 @dloos
I started at NWMH LC clinic (in neurology) on 9/11 after a one year wait; LC since 3/23, mostly neurological/fatigue symptoms. I was evaluated (interviewed?) by Dr. Adibnia at length and then Dr. Koralnik popped in (and out). Dr. K. said "try amantadine, it's helped a lot of people," so I picked up the prescription. He said there are over 2000 patients in the LC clinic, so he's probably a bit overworked. After reading Mayo's list of possible side fx of amantadine, I'm quite hesitant to take it, as I too am sensitive to meds. He also recommended that I try the LC support group (Zoom, monthly); I checked into it and spoke with the LCSW who runs it. He sent a link to previous meetings (available on YouTube). They last 1-1/2 hours, and start with various M.D.'s who speak for the first hour; that is followed by a group chat in which the LC clinic patients share viewpoints, and I'll start this week. I'm to follow up my clinic visit in six weeks with a virtual visit with "Asheera": -- and have been trying to make that appointment with no success yet. Other than that, after a year and a half of this stinky thing, and too much time spent researching, crickets.

Thanks for checking back in. I’m sorry it sounds like it wasn’t as fruitful as you hoped.

I was sort of prepared for that kind or response though; my expectations were low since I’ve had chronic pain for a very long time. I’ve learned not to really expect much concrete help from physicians, particularly neurologists.

I’ve mentioned this before in other chronic pain discussion, but I for the most leverage for fatigue out of appropriate physical therapy (meaning someone who is experienced with chronic pain and fatigue said understands PEM, central sensitization, and appropriate pacing), especially if they’re knowledgeable in pain neuroscience and/or a pain neuroscience program such as Curable (it’s an app, so easier to access and give it as an example).

I’m surprised you’re having a hard time getting an appointment with Asheeta. She had tons of availability for video visits when I checked and it wasn’t hard to schedule—I always schedule at the front desk. But maybe her patient load has grown. If that or calling doesn’t work, you could message Dr. Koralnik’s team in My Chart and say you’re trying to schedule with Asheeta but with no luck. I had to do that once and they had someone call me (because I needed an in person, which needs to be specially scheduled). All her return visits are by video visit.

If it’s helpful to anyone at all, I think I have a notes from my Johns Hopkins PT about paced exercise for chronic fatigue. She treats POTS and Long COVID.

Would love to hear your experience with amantadine if you decide to try it. Thanks again for sharing. It’s tough.