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Brain fog - ask your doctor about amantadine
4 months into long Covid and in clinical studies at University of Illinois Chicago and Northwestern U. Dozens of memory gaps throughout the day, like blackouts. I’d take a guitar lesson and be shown a riff. I’d have to write down each note and play it while reading. I couldn’t remember a handful of notes and I’ve been playing 20 years.
A Northwestern neurologist suggested we try amantadine. You can look it up. One thing it helps with is older people with cognitive issues. I’m 45 and healthy. After two weeks, I’m a new guy, and I had lost all hope. A had a lesson a couple days ago. He’d show me a riff and I’d play it right back and we would move on to the next part. I’m doing my job far better. I can remember my whole day. I recovered physically after three months but had been stuck on this memory issue until now.
I’m not a doctor, just a regular guy on this long journey. Just suggesting you ask your doctor. Best to all.
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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…
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2 Reactions@emo Again, your input is valuable, and thanks for the link to Nature, quite a comprehensive study. Regarding side effects, I've had a few, and always a surprise to my doctors, since "no one else has reported that". And yes, brain fog has been a big issue, it waxes and wanes with my general exhaustion level. I will check with SRA lab re the trial and keep reporting back. We do need fortitude, also patience and persistence. Onward!
🙂 Thanks; that’s very kind of you.
Here is the link to the discussion about the SRALab clinical trial I mentioned: https://connect.mayoclinic.org/discussion/clinical-trial-for-long-covid-brain-fog-in-chicago/
It is mostly remote, but I think at least 5 weekly sessions are required in person. It’s a 3-year study where they’re moving folks through so even if you express interest now and qualify you don’t necessarily have to start now.
Thank you for sharing. I am going to get that medicine. I have memory loss and confusion
I am optimistic
Thank you for sharing.
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1 ReactionI have been taking amantadine for long covid brain fog/memory/cognitive issues since April 2024, and like the initial report from 2022, within days people noticed I acted like my old self again. In particular
, I could form and recall memories again, as well think 10x better again, and so do my work well again (I am a scientist, so my brain not working well was a huge problem for the 18 months before).
I convinced my doctor to let me try it based on that nature study for long covid fatigue someone posted above (I also had fatigue) as well as the ongoing clinical trail on using amantadine for long covid cognitive issues.
(Not allowed to post a link, as new here, but it is clinical trial NCT06055244 at Ohio state, if you look at clinical trials for com you should find it with this).
It has also reduced my fatigue, so I can get through a day if needed without a nap. But still feel much better if I can get a nap. But now it can be 20 min instead of the prior required 2h. So easier to incorporate into my day.
I still have POTS from long covid, but that’s decently controlled by Ivabradine and electrolytes.
I have had very few side effects. Main one is I am more sensitive to caffeine since on it, and so I can’t have more than one cup of coffee early in the morning or it makes me jittery and interferes with my sleep. Other one is if I take the prescribed 200 mg, 100 mg in the morning and 100 mg at noon, my sleep is worse. Without much added benefit from taking the second dose over just the morning one that I could notice. So I now only take the 100 mg morning dose and it has been great for me.
Only other thing to note is that one can’t drink alcohol on it. Apparently it greatly amplifies the effect of alcohol and can make you vomit from alcohol. I haven’t tested this. Happy to have my brain back and willing to give up alcohol if that’s the trade I have to make.
Soon my doctor wants me to stop taking it to see if it fixed anything in my brain or if I need it long term. I of course hope it fixed something but also afraid to loose my brain again….guess I’ll find out in the next few weeks.
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4 ReactionsThanks so much for sharing your experience with amantadine and noting the tradeoffs with the caffeine and alcohol! I’m glad it’s helped you. I was the person who posted the Nature study, but it’s so good to hear a specific experience in context with the Nature study. Good to know it also helped with your fatigue because my doctor has been talking about it just in the context of brain fog, but it does make sense if there’s less brain fog, one might feel less fatigued.
That’s interesting that your doctor wants you to stop/pause it. Will you be tapering it?
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1 ReactionI don’t believe I had side effects, but there’s so much going on to my body and have a bunch of meds. It quickly helped then wore off around ten months and my dose was increased.
Keep us posted. They’re good folks at NW
I did SRA lab for speech therapy as part of Northwestern’s long Covid studies. It was to help me organize my thoughts and mental processing to manage brain fog. Good people there!