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RLS - what else can I do that I have not tried?

Posted , 6 users are following.

chalkey79
chalkey79

I have had RLS for many years and was told after an inpatient sleep study that I have an average of 17 evens per hour. I also have complex sleep apnoea that is successfully treated (apparently) using a BiPAP machine.

The medications I have been given for  RLS by the hospital have, at best, not worked, and at worst proved very counterproductive. At the moment I am in the throes of a long. drawn out and very painful withdrawal from Clonazepam, which had no noticeable benefit. Neither did Pregabalin help. I was prescribed Pramipexole but as the Clonazepam withdrawal was so severe initially I stopped taking it without giving it a fair trial.

Other than perhaps trying the other meds that are options is there anything else anyone can suggest? RLs and benzo withdrawal together are real hell. Some days I wake up as tired as when I went to bed and I need early nights and an absolute minimum of nine hours' sleep (preferably 10-11 if possible) to stand any chance of having a decent day.

 

0 likes, 5 replies

5 Replies

  • nfmiller
    nfmiller chalkey79

    Posted

    Hi Chalkey

    Give Pramipexole another try, it works for me. You should get 9 hours sleep on the right dose.

    Norm

  • phazie
    phazie chalkey79

    Posted

    Have you tried 

    ropinirole (generic for Requip)? I have had this disease for 8 years and it is relentless. I find I have to take the medication exactly on time since it often takes up to 2 hours to work. Also try taking an iron supplement even if you don’t think you need it. This is a horrible disease and I wish you all the best in getting a routine that works for you. 

    • phazie
      phazie

      Posted

      Also, I only get 6 hours of sleep at most, no matter what I do
  • chalkey79
    chalkey79

    Posted

    Thanks for the replies. I will try iron supplements and ask for Pramipexole at my next appointment. I do not think I have tried Requip so that could be an option. I will indeed do some research. 
  • kathy00483
    kathy00483 chalkey79

    Posted

    2 most effective things for me, soaking in a hot bath and using a bean bag as follows:  I make my bean bags with flannel and the cover with fleece.  8 inches by 20 inches, fill with approximately 6 cups of winter red hard wheat berries (so when laying flat about 1 inch high).  Heat in microwave for 2-3 minutes, take out and move around to mix wheat berries, and heat another 2-3 minutes.  Lie in bed face down with rear end up (looking cute:-), and bag at back of knees, between both legs, touching thighs and calfs.  Instant relief.  The wheat berries will stay warm for up to 30 minutes. Adjust legs to what is comfortable over time. 
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