Any CFS/ME sufferers have success with Amantadine?

Whiplashy

I've been taking Amantadine for a few weeks but it doesn't seem to be doing anything for my energy levels. The consultant said it was 50/50 whether it would do anything and that a lot of people can't take it. It seems to be making my brain "fog" and anxiety worse. I won't be seeing the consultant again for 6 weeks and can't decide whether its worth taking the tablets or not. Has anyone had any success with them?

ynwa14

I didnt mate, I thought it lessened my energy - didn't think it was possible but there you go. Mind you I've had no luck with anything they've prescribed me so far and it's been nearly four years.

kangaroo

For what it's worth, there was previously a published trial of Amantadine:

Amantadine and L-Carnitine Treatment of Chronic Fatigue Syndrome

Nol. 35, No. 1, 1997

Neuropsychobiology 1997;35:16–23

(DOI:10.1159/000119325)



Plioplys A.V.a,b · Plioplys S.a

aChronic Fatigue Syndrome Center and Department of Research, Mercy Hospital and Medical Center andbDepartment of Neurology, University of Illinois, Chicago, Ill., USA

Neuropsychobiology 1997;35:16–23 (DOI:10.1159/000119325)

Abstract

Carnitine is essential for mitochondrial energy production.

Disturbance in mitochondrial function may contribute to or cause the fatigue seen in Chronic Fatigue Syndrome (CFS) patients.

Previous investigations have reported decreased carnitine levels in CFS.

Orally administered L-carnitine is an effective medicine in treating the fatigue seen in a number of chronic neurologic diseases.

Amantadine is one of the most effective medicines for treating the fatigue seen in multiple sclerosis patients.

Isolated reports suggest that it may also be effective in treating CFS patients.

Formal investigations of the use of L-carnitine and amantadine for treating CFS have not been previously reported.

We treated 30 CFS patients in a crossover design comparing L-carnitine and amantadine. Each medicine was given for 2 months, with a 2-week washout period between medicines.

L-Carnitine or amantadine was alternately assigned as fist medicine.

Amantadine was poorly tolerated by the CFS patients.
Only 15 were able to complete 8 weeks of treatment, the others had to stop taking the medicine due to side effects.

In those individuals who completed 8 weeks of treatment, there was no statistically significant difference in any of the clinical parameters that were followed.

However, with L-carnitine we found statistically significant clinical improvement in 12 of the 18 studied parameters after 8 weeks of treatment.

None of the clinical parameters showed any deterioration. The greatest improvement took place between 4 and 8 weeks of L-carnitine treatment.

Only 1 patient was unable to complete 8 weeks of treatment due to diarrhea. L-Carnitine is a safe and very well tolerated medicine which improves the clinical status of CFS patients.

In this study we also analyzed clinical and laboratory correlates of CFS symptomatology and improvement parameters.

Whiplashy

Thanks for the info guys. Tablets are going in the bin!

kangaroo

By the way, following reading that paper, I started taking L-Carnitine and found it useful (I particularly noticed when I stopped).

kangaroo

A slightly humorous November 7 blog post by somebody with ME/CFS on the lengths people with the illness will go to to try find relief (to use the description he posted on Facebook): http://thedamnchronicsituation.blogspot.ie/2013/11/a-mask-sauna-and-other-cfs-paraphenalia.html

pelevin

When I was extremely bad with CFS during the summer, I seemed to find D Ribose sugar essential to making me in any way able to function, if that's of any help to anyone.
Going more into the unknown, I bought an earthing sheet which, though it's always hard to know what is or isn't making a difference, at least coincided with quite a significant improvement.