Restless Legs anyone??

I have had Cerebellar Ataxia for over 30 years & have suffered with Restless Legs for some years & am now finding its getting worse.

I have been told its probably due to me having Ataxia but other than that no real help, I just wondered if others with Ataxia suffer similarly & if you do have you found anything that may help alleviate this??

I am a member of the RLS forum on Healthunlocked which is great but just thought there might be something ataxia specific??

11 Replies

  • You could try asking your specialist about baclofen.

  • Hi,

    First of all, let me say how much I sympathise with you: restless legs are the bane of my life, robbing me of a good night's sleep and leading to daytime movements which are embarrassing! There are prescription medications out there and I have discussed these with both my GP and neurologist before deciding that they were not for me. I also discussed the problem with another consultant- not related to Ataxia- who said that he thought that RL, however annoying, was a sign of circulation and activity and not wholly bad. I found this rather comforting.

    I have tried magnesium sprays and alternate hot/cold shower before sleep and sometimes these have appeared to help.

    Several friends told me about this recent article in the Daily Mail, so I have included it, not as an authority , but just to underline how common the RL problem is.

    Good Luck!

  • I have had Cerebella Ataxia for the past 10 years and I too suffer from restless legs. My Dr has prescribed Quinine tablets , They seem to be helping at the moment. Hope

    this might help.

  • I have Cerebellar Ataxia and also restless legs, robbing me of sleep as well,i am diabetic on insulin and diabetics are prone to RL, and i began RL before my Ataxia began! I do have short spells of relief when it seems to go away, but always returns.It is a horrible feeling and a horrible thing to endure. Eileen.

  • My husband suffered with restless leg syndrome and swears that quinine sulphate tablets are the answer.

  • I have been taking 250 mg of magnesium tablets for years and find they are of great help in controlling my legs.

  • I have CA unknown and also get RLS. As RLS only seems to occur when I'm inactive (sitting or sleeping), I have concluded it is my legs telling me they want to move around. To that end, I get up and either walk about (in a manner of speaking), or if that is not appropriate, I stretch whichever leg it is. It nearly always works for me. Do be careful about stretching as it is easy to overstretch. If in doubt, talk to a physio, health care or exercise professional, who should explain how to do it safely. IT IS NOT A CURE, and only works until the next time.

  • Is this where one is un twisting to the left and then to the right the legs at the ankles? I have had this for some years too, but just thought that it was a 'habit'. I can't believe that there are so many symptoms from "just" one part of the brain shrinking! ... or, because that part is not working as well, it is making the other parts, "fill in" to do other things perhaps? Like re wiring the nerve pathways..... wonderful thing the brain.

  • Quinine Sulphate and Baclofen do similar things. Quinine being the more natural derivative. Try both on prescription. Both reduce leg spasm and twitch, allowing you to sleep. Neither is addictive, but their relief given is.

    Quinine is also used against other ailments (An antimalarial medicine).

  • I suffer with that on occasion but haven't found anything that really helps . Thankfully it's only now and again.

  • Hello all,

    I've quite recently started RLS; GP says that levadopa pills, as used for Parkinson's, can be useful in absolutely minimal doses.

    I tried Ropinirole and Pramipexole but I had overwhelming need to sleep and even more staggery. Note that different people experience different side-effects!

    Reluctantly, they're expensive but we tried Rotigotine patches, minimum dose again. These also were dreadful for sleeping and staggering but it seemed somehow more "fightable".

    In view of the cost he let me try leaving them on while they worked, which can be anything from one day to seven. This has been good for me, after the first day the staggering seems much less and the need to sleep outweighs the RLS and it can be fought, it's not so overwhelming.

    Regards ant

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