Is anyone taking amantadine for brain fog?

I started with long Covid in May 2022. I enrolled in the NIH RECOVER long Covid study through University of Chicago. I also enrolled at Northwestern University long Covid program. I’ve had countless tests done on me.

Around July 2022 I was really bad. I had to take a bunch of photos of my walk from a parking garage to an office so I can find my way back to the car. I couldn’t remember anything. One for the many neurologists I see prescribed amantadine. Within a couple weeks, people were spontaneously coming up to me saying I’m like a whole new person, even my appearance and speech.. I got lots of comments at work.

Come October, I found myself slipping, and my dose was increased, which seemed to help stop the decline. I’m on a couple of other drugs recently to help with focus and depression. I had a bad brain fog week recently. I changed my diet, stopped doing office work on weekends and weeknights, and started using deep breathing exercises. That all helped beyond the meds.

My clinical visits and tests are booked for the next six months and will continue. It builds a large amount of reports on me that I share with the doctors and help them learn more about to treat me and others.

In the next couple of weeks I will see a speech pathologist to work on my cognitive processing.

There’s lots of research on how amantadine works and what conditions it’s prescribed for. In my personal experience, I feel like it stabilized me at a closer position to “normal.” I don’t know if I will ultimately improve, maintain, or decline. Long Covid researchers are working on it, so that’s good.

The Doctors at the UNC Long Covid Clinic recommended a nightly dose (1mg) of guanfacine and 600mg of N-acetylcysteine, both before bedtime. They said they've seen it help a number of patients and I would add that I believe it has helped me. To the best of my knowledge, neither of those drugs have as significant a side effect as melanoma. There was no mention of amantadine

Thank you. I went to their website and it has lots of really good long Covid info. I learned new things about brain fog and how to manage my energy levels. https://www.med.unc.edu/phyrehab/patient-services/services-and-specialties/covid-recovery-clinic/

I'm glad that my comments were helpful to each of you. We are each going thru so much and it is so life disruptive that knowing others understand and can empathize is always comforting. More importantly, so little is known about cause and treatment, anything that we can share with each other is a real value in this crazy, complicated chronic illness/post-viral syndrome!

Hi- Did any of you taking guanfacine or amantadine experience side effects upon starting the medication? I saw the Long COVID PA at Northwestern yesterday and they typically prescribe amantadine (I’m not sure if they would prescribe guanfacine), but I’m very sensitive to medications, so I always get nervous.

I also have POTS so the comments I’ve seen about dizziness and lowering blood pressure concern me—I don’t need to make it any easiest for my blood to pool and make me dizzy!

Haven’t found any recent comments so hoping someone’s still around :-). Thanks!

I have been taking guanfacine for six months now. It has been miraculous for my debilitating brain fog symptoms (as well severe depression). That said, it has come with serious side effects:

1) blood pressure- guanfacine is indicated to treat hypertension, so you might want to take that into consideration. I have high blood pressure & it lowered mine from an average of 134/95 to 114/86.
2) insomnia- As a narcoleptic, this was a surprising side effect. For the first time in my life, I now have trouble staying asleep, usually waking up about every 3 hours. I strongly recommend taking guanfacine at bedtime (as is indicated). I was taking it in the morning, and I could only get a total 4-5 hours of sleep at night.
3) constipation- I always had trouble in this department, but I was going once every 12 days when I started guanfacine. I started taking Miralax daily, which got rid of the issue.

So, is guanfacine worth it? It is for me. It's been the difference between being able to complete sentences or forget what I was saying after 3 words.

Hope that helps!