janiedelite Posted February 16, 2011 Report Share Posted February 16, 2011 I really love my neurologist. He's not a dysautonomia specialist, but does specialize in small fiber neuropathy (which I have). However, during my appointment today I asked if there was anything we could use to treat this fatigue that's so unrelenting. I've tried midodrine and florinef and had bad reactions to both. I can't take caffeine either. He suggested amantadine, saying it helps in about 50% of MS and ALS patients' fatigue. If this doesn't help then I can try Provigil, which is more expensive. Since I'm using these meds off-label, I'll be paying out-of-pocket.Has anyone tried Amantadine? I'm also thinking this might help because it's suspected that mono was the cause of my POTS. So maybe this anti-viral med will be helpful if chronic Epstein Barr is contributing to my POTS at this time.Thanks! Quote Link to comment Share on other sites More sharing options...
green Posted February 16, 2011 Report Share Posted February 16, 2011 Yeah. I take Amantadine. I have stuck with it for a year now, with periodic holidays.It is not a perfect medication for me, it wakes me up in the early morning with a fast heartbeat for the first few weeks. It is better than anything else I've ever tried for helping with fatigue and mental sluggishness. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 16, 2011 Author Report Share Posted February 16, 2011 Thanks, Green. I do notice a little more chest pain today since taking my first 100mg dose. I can go up to 200mg twice a day (morning and noon dosing). Can I ask what dose you've been on? Have you noticed any decrease in its efficacy over time (does it still work as well as the first day you took it)? Quote Link to comment Share on other sites More sharing options...
targs66 Posted February 17, 2011 Report Share Posted February 17, 2011 I tried Amantadine - my brother has MS and gave me a few of his capsules about two years ago.It wasn't good for me: although I was alert, it was that icky edgy, heart-pounding sort of feeling, with a bit of buzzing in my ears. I wasn't sleepy, but my brain felt foggy.My brother was prescribed it to help with his MS fatigue but stopped taking it for the same reasons that I did.I hope it's better for you! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 17, 2011 Author Report Share Posted February 17, 2011 I had somewhat the same reaction, feeling edgy all day yesterday (I guess the half-life is something around 15 hours). I also had an increase in my chest pain symptoms. I read that it works on fatigue by raising serum norepinephrine levels. This may not be a good drug for me because my norepi levels are already too high when upright. Maybe I'll keep it around to try in the summer when I'm having more vasodilation-related fatigue.I'm taking it again today just to see how I do. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted February 18, 2011 Report Share Posted February 18, 2011 Does he know about supplements for fatigue and neuropathy? There are really good ones that you can try. I don't take any prescriptions for POTS. Most doctors have no idea for some reason. I have doctors that do treat me with very good ones. Quote Link to comment Share on other sites More sharing options...
issie Posted February 26, 2011 Report Share Posted February 26, 2011 Does he know about supplements for fatigue and neuropathy? There are really good ones that you can try. I don't take any prescriptions for POTS. Most doctors have no idea for some reason. I have doctors that do treat me with very good ones.Okay, so tell us what you take......... Quote Link to comment Share on other sites More sharing options...
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