A doctor here in the US who sees quite a few female carriers has started prescribing Amantadine, a Parkinson's drug for treating tremors. The initial reports seem to indicate an improvement in walking (more effective than 4-AP) with the unfortunate side effect of insomnia. I was wondering if anyone on this site has experience with this medication or thoughts about it. Thanks.
Catherine
Hello, I've taken a fair amount of Amantadine. I took it for fatigue. But I soon went back to Modafinil.
There is so much evidence for 4-AP. It really is about the best there is, then again, after what you've said, I'm tempted to try Amantadine again. I still have plenty left, probably out of date by now.
On a related point, doctors prescribe all sorts for "movement disorders", Prednisone, Pregnenolone, DHEA, Piracetam.
I regularly take Piracetam, and it really does work. DHEA doesn't.
But that's just me.
With a disease like ours, I expect there are all kinds of movement disorders. Amantadine is cheap, I had no problem getting it prescribed (after walking out on two neurologists and getting lucky on my third).
What Doctor do you see? I am a carrier as well.
The doctor is Florian Eichler at Mass General. He is not my doctor as I live in North Carolina, but I had heard about Amantadine from one of his patients with x-ALD that I am in touch with. That said, I spoke with my physiatrist here (I prefer physiatrists to neurologists ), and she is quite familiar with the medication and interested in having me try it to assess if it assists with balance, a significant struggle for me.
Thank you! I have heard of Dr Eichler. My daughter lives in Boston. At some point I may need to see him.
Good to know as I have an appointment with him in August
I live in Minnesota...I asked my doctor what patients with MS take for fatigue and he said Amantadine. I requested he prescribe for me, which he did. It definitely helps with my fatigue...not so sure about my walking. I still have issues with my balance, etc.
Thanks, that's good to know. I do not have issues with fatigue (thanks to diet, I believe) so I will not get my hopes up.
Bumping this (slightly) old thread.
I was clearing out my back room and I found my old stash of Amantadine. I thought long and hard before taking any, but did anyway.
I last took it as a stimulant, wasn't impressed at all, soon went back to Modafinil.
But the whole movement disorder thing really intrigued me. Been a few days now of taking Amantadine and I feel good, feel like the sun is shining inside my head. Don't read into that too deeply. Feel very good is all.
One thing, I don't have the achey legs. I have said that before about other medicines. We shall see how long the Amantadine remains effective for. I have been off work lately so haven't attempted any serious walking, but I shall be headed out later. Be interesting to see how well I do.
I am taking with 4-AP. If all goes well, I shall get a regular prescription for this.
Anybody have anything to add?
Take care, folks. Talk to you all later.
I did see Dr Eichler in August and asked about this medication. He said he didn't think it was for me. I'm now taking 4-ap (20 mg) during the day and baclofen (5 mg) at night to help me sleep.
After about 2 months, my spasticity and balance have slightly improved over when I was taking baclofen during the day. Also, while taking 4-ap, I'm less foggy in the head and my legs feel less weak - most days - than when I was taking baclofen. I'll keep on this regimen for the next months.
I ended up doing a trial of the Amantadine, gradually increasing the dosage over about three weeks. It was a disaster! The insomnia that I experienced was so acute that I was a zombie and completely non-functional. The benefits experienced were so minimal--I couldn't wait to get off of it.
Catherine62 ,
Hello, what dose of Amantadine did you end up on?
200 mg total, 1 100 mg pill in the morning and another at lunch.
That's my dose.
Doesn't stimulate me in the slightest, but I like it.
I shall type up a report on this. I've been Googling "movement disorders" all week.
Anyone else wearing AFO's?
Baclofen - your experiences
Myoclonus and Sleep Deprivation
