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martin45332
martin45332

Hi

For the last couple of weeks I have been on pramipexole 0.180 (which caused sleeplessness) plus 1 mg of clonazepam to help me get to sleep. When I wake around 4.00am my legs start jerking. If I lay still and awake my legs keep still although very uncomfortable but if I nod off they jerk violently so I am rather short of sleep!! My doc suggests having a bit more clonazepam, perhaps 0.25, to see if that will help me get back to sleep. I don't want to get up or listen to music etc but if anyone has met this and has dealt with it I would very much welcome details. I think I am suffering rebound as the pramipexole wears off

0 likes, 12 replies

12 Replies

  • mrsmop
    mrsmop martin45332

    Posted

    I keep meeting it and haven't dealt with it yet!

    I just stop taking the drug that causes it, which isn't what the doctors want.  But, there's a limit to how long you can go without sleep, isn't there?

    I get rls when I take Lansoprazole, which I am supposed to be taking for 3 months,  I'll be like a zombie by the time I go back to the hosp

     

    • Udon
      Udon mrsmop

      Posted

      OMG, a proton pump inhibitor gives you RLS.  I think that's actually listed as one of the more RLS friendly antacids.  That's it as far as I'm concerned, every single drug/substance has to be looked at as a possible trigger for RLS.  If your heartburn can light up New York City like mine can then you can try papaya enzymes or zinc.  Zinc works the best of all.  Or I will change up sometimes and if it's early enough in the day I will take Tagamet or Zantac which provides near immediate relief and if it's early enough in the day then it won't give me RLS at night.  If it does give me RLS then I take one iron tablet and I'm sound asleep.

       

    • mrsmop
      mrsmop Udon

      Posted

      I don't suffer from heartburn, the doctor told me it was silent reflux because I have no signs or symptoms at all.

      I take zinc for another condition and the doc took me off Zantac because he wanted me to take Lanzoprazole.

      I have to say that I suffer from the RLS when I am up and about and going to bed generally helps.  Last night I took some Co-Dydramol, which knocked me out!  I do hate having to take all these drugs.

       

  • RobertT
    RobertT martin45332

    Posted

    If pramipexole is causing problems with your sleep, I wonder why your doc hasn't switched you to ropinirole (or rotigotine). 

    I sometimes get a shuddery sort of jerking if I fall asleep in the afternoon or evening before I've taken a ropinirole or before it's had time to take full effect. I'll leave you to make your own conclusions from that.

    (I'm guessing you're taking 0.125 mg pramipexole dihydrochloride monohydrate equivalent to 0.088 mg pramipexole which is the lowest dose for RLS.)

  • graham9772
    graham9772 martin45332

    Posted

    Dear Martin

    Your symptoms sound like they dont match the symptoms of RLS.   I cant find a reference right away but in many places I have seen that if its RLS then it should get worse when you lie down and is improved by movement such as walking around.   Hence it is a disease of the walking dead tired.   RLS leads to walking around in circles for several hours every night because the trouble goes away while you are walking.

    I'm not expert enough to be sure of this but you should talk to an expert because if its something other than RLS you may be doing harm by taking some of the rotten medicines that doctors have available for RLS.   It might be something that needs a different cure so you want to get to the right treatment soon as possible

    You could do worse than read the discussion in this forum  "RLS and Diet"  it might help whatever you have and you will know in a week if it is going to help.

    Good luck

  • martin45332
    martin45332

    Posted

    Hi

    I am never quite sure about the protocol of replying to your own posting but I wanted to comment on Graham's comments, I am now off the pramipexole and am being introduced to ropinarole. I still take 1.5 mg of clonazepam. The clonazepam helps me get to sleep but as i said earlier the leg spasms start when i wake-5.00pm this morming. I will be seeing a neurologist in 4 weeks so I will see what thye make of it. I have odd sensation and pain in my legs most of the time so if I don's have RLS I will be very intereested to iknow what it is. I definitely have PLMD 

  • joan44703
    joan44703 martin45332

    Posted

    Hi Martin

    I am on 2mgm patches and take BioMagnesium supplement, I have been great on this, but tonight I had a family get together, cooked roast dinner for 10, plus afters, been on my feet most of the day, went to bed tired out, it is now ten past three and still awake, my legs won't stop jumping, obviously over done things, no more family get togethers unless we have a take away, so frustrating has this happened to anyone else, I hate this debilating condition wouldn't wish it on my worst enemy

    • graham9772
      graham9772 joan44703

      Posted

      I can think of a few people who deserve this more than you and I!!!

      Most of them are politicians.

      If you have asked me not to mention FODMAP I apologise in advance -my memories for names is limited by years of lack of sleep.   Sorry.

      If not then I suggest you read the discussion ""RLS and Diet"

      The scenario you painted is typical of my RLS. and the description made my mouyh water.   If your meal included onions and garlic then it might suggest that foods are a rpoblem to you.  There are also a few other foods but its best if you read about the FODMAP diet.   There is a reasonable chance that the diet will help you.  I'm not selling anything, I only hope that more people will give it a try and find happiness in 10 hours sleep every night with zero medication.   It has worked for 4 out of 4 RLS people who have tried it but I don't expect it to work for everyone.  I just think its better than using drugs and it works better for the lucky ones than using drugs and a huge amount cheaper.

      Give it a go.   If it doesn't work in 8 weeks then it might not work.   It took me longer to get 99% freedom but that appears to be  was because I was lazy (i call it too busy) and not absolutely strict with the diet.  The good news is that these days when I transgress for a special occasion (like my niece's wedding)  I seem to suffer only a little and briefly whereas in the past one small wafer of unfriendly food would ruin two nights sleep.

      Some people are put off because it's a diet designed for irritable bowel syndrome (IBS) but why does that matter if it works?    Interestingly many IBS victims have RLS and I have seen written that some high % of these find their RLS goes away when they are on their FODMAP diet.   Coincidence?   Spend 8 weeks proving it wrong but p[lease let me know how it goes.

      I have been told that there are other similar diets for RLS that also have mixed success.   If FODMAP doesn't work I would suggest trying others provided they are not some commercial nonsense.   I recomend getting help from your doctor and a dietician.   Its no use swapping your RLS for malnutrician but you CAN eat well on the FODMAP diet and you CAN have snacks and rushed meals without leaving the diet.  

       

  • joan44703
    joan44703 martin45332

    Posted

    Thanks Martin I will certainly try this.My meal was roast beef, yorkshire pudds, roast potatoes, cauliflower, brocolli, cabbage and carrots and turnips, followed by fresh fruit salad and cream, no garlic or onions. Gather you are up at this ungodly hour not able to sleep. Tomorrow will be a no go day, so much to do as well!!!!! on holiday next Saturday oh well plod on as my boss used to say!
    • graham9772
      graham9772 joan44703

      Posted

      Dear Joan

      If FODMAP is right for you then there are probably some things in your delicious dinner that you probably shouldn't have.   I think you would have had to leave out Yorkshire pudd (wheat) Cauliflour, brocolli (small serve is supposed to be OK but I avoid it completely),    cabbage (a small amount might be OK)      No cream on the fruit salad  (lactose)   What fruits were in the salad?   oranges, pineapple, kiwi fruit,  bananas and lots of others are allowed are allowed.   Some unlikely things are not allowed like apples and pears so you really need to have a copy of a list of unfriendly foods.

      Tea and coffe decafinated and with lactose free milk?

      The good news is that after 8 weeks of total abstinance you reintorduce foods one at the time.   Weel you might start with lactose and drink a little milk to see if it affects you.  If it doesn't affect you than you can then eat all the foods that contain only lactose.   Then you move to perhaps fructose and so on.  Small quantities of each.   See if you can find a dietician to help with this.

      Has anyone seen lactose free ice cream?    I have tried whipping lactose free cream but it doesn't seem to work so I fear ice cream might be the same. 

    • joan44703
      joan44703 graham9772

      Posted

      Thanks for reply. I will try and avoid these foods and see if I get some improvement. Will miss cauliflower and brocolli favourite veg. Definitely need to have copy of unfriendly foods.

      Thanks

       

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