Fatigue

[din55a]

I have been prescribed Amantadine for fatigue which I don't find effective and leaves me feeling heavy. I stopped taking this. What medications are you on and what is your experience?

[jurgen]

Well, it would depend on the type of your disease, I think.

I´m an SCA-sufferer and as there is no remedy anyway I have decided to

swallow a GINGKO -pill everyday only.

Beside gingko I do physical and mental exercises, of course

Regards

[Hidden]

Crikey, I`m on so many tablets, if I were ever to fall over (no pun intended) I would rattle. Most of the meds I take are for my awful `cluster headache` attacks and aching limbs.

Not much they can give for SCA6 if anything really.

I`ve noticed an increase in my weight, but not on my legs, they seem to be losing weight along with my left arm, weird though

[wibblywobbly in reply to Hidden]

I too have lost weight on my legs and arms recently, more so my right arm than left and i'm right handed. Very weird

[wibblywobbly]

i'm exhausted most of the time. Usually have about one hour per day not tired - if is a good day. I have no medication at all for the intense tiredness. I also have a genetic SCA - gene type unknown at mo.

[cocoa in reply to wibblywobbly]

I have late onset idiopathic CA and have given up with prescription tablets because there are too many side effects. I now see a nutritionist and she is helping me with supplements and diet. We are all different but I have found that vitamin B complex helps a lot.

I still have fatigue but just have to tell myself to pace myself. It is not easy though because we never know we have done too much until it is too late.

[wibblywobbly in reply to cocoa]

I totally agree about pacing. My physio asked why don't I stop before I overdo it when doing things at home. The prob is that once I can feel that I really must stop then I know I have overdone it!!! It really doesn't take much

[berejena in reply to wibblywobbly]

Sounds like me to a tee

keep well

Berejena

[neta]

I am taking infusions each month called IVIg because it is thought that my CA is auto-immune induced. Also, I had a very high "bad" antibody count. Maybe the IVIg is slowing the process down. It has muted (hate to jinx myself here!) my hive attacks, which were triggered (I think) by new medication and went on for 3-4 months.

Whatever it is/does, it, the IVIg is, if anything, very subtle, not wham! change. My mood has a big effect on I how I feel and I seem to feel worst in the a.m. and best in the late, late p.m. I have no weight loss in either leg or arm. I run w/o holdinng on to anything in a circle on my roof for 1/2-3/4 of an hour each day and then do floor exercise which are a comat I nbination of. what I learned in gym and some balance exercises. I also try to read aloud 5 articles per day from a newspaper.I eat all foods including chocolate,ice cream and alcohol (I try to eat greens and meat too) and take no vitamins. I am tired at around 2pm but so are alot of people. I twish there was a magic bullet but there isn't right now. I dont know whto me.. Iam a big believer in drugs. My shrink told me this week that most "brain science breakthroughs" are donor-driven scams.

[modern1]

im on a salt free diet and after 10 days i feel really energized almost all the stiffness i had in my legs has gone its amazing

[youngbutold]

Hi although I have an unknown SCA ,continual cramp in right foot, muscle spasms I still try and play golf. I get tired so I take a caffeine pill about an hour before I'm due to play and energy drinks on the way round and that seems to work mind you I'm knackered when I get home but its worth it