What next?

Posted , 7 users are following.

I've been on Rotigotine patches for a few years now, and am on 3mg which apparently is the highest dose, but lately they seem to be having little effect. Has anyone else been in this situation and can advise me where to go from here?

0 likes, 10 replies

Report / Delete

10 Replies

  • Posted

    They stopped working for me too. Ropinorole, pramipexole don't work either. Gabapentin is no longer effective. I get by with 2 Tramadol each night but they stop me sleeping. Doctor and specialist have no more ideas. I've tried diets without effect. Sorry this sounds depressing but that's life at the moment......

    John

    Report / Delete Reply
    • Posted

      That does sound depressing. If the Tramadol stop you sleeping, then why take them? What else have you tried? How do you feel during the day?

      There's got to be an answer

      Report / Delete Reply
    • Posted

      I take the Tramadol because I couldn't cope with the agony of restless limbs (it cycles from arm to leg other leg etc...). Dopomine agonists no longer work. During the day I am absolutely fine but every night RLS wakes me after 1/2 hour and no matter what gymnastics I try, I have to get up and walk around. With 2 Tramadol it will ease after an hour but I don't get much sleep. Would love to try something else but not aware of anything....
      Report / Delete Reply
    • Posted

      You say you've tried diets. Have you tried the low-FODMAP schedule, as researched by the team at Monash University (Aus).

      Dr Sue Shepherd's the leading light on this dietary regime, which was designed to help IBS sufferers. I have followed it carefully for ten weeks now, and to my amazement found it simultaneously reduced the frequency of my RLS attacks.

      As for cause: the only obvious cause for RLS/WES that I personally experience, is  over-activity during the day. A day out at the zoo with my grandchild, as well as the day's regular activities, resulted in the worst night I've suffered for ages. Sad, and hardly life-enhancing!

      Next attack I plan to try the 'knees up' scheme, described here, IF I can remain in one position for half-an-hour. (Am doubtful about this!)

      Report / Delete Reply
    • Posted

      So far, I have cut out things that I know increase my RLS (sugary, treacle, spicy, onions(?), chocolate etc.) to see the effects and to then check them against the FODMAP diet. Up to now I haven't had any improvement. I intend to try low FODMAP diet but need a period of stability to test properly and I don't have that at the moment (work etc).

      I am quite flexible and tried prolonged 'Knees Up' tonight, pulling my legs up tightly against my bottom. I won't be trying that again in a hurry - writing this at 2.00am with worst RLS for ages!

      Report / Delete Reply
  • Posted

    My insurance won't pay for the patch or the new gabapentin - Horizont - so I take plain old cheap codeine.  It works for the most part - with a little Requip.  However when I increase the Requip I rebound.  So if I'm in a particularly bad period, I just take a little more codeine.  I was surprised that my Florida neurologist would give me codeine ongoing, becuase Florida is freaked out about these types of drugs due to illicit prescriptions in "pill mills".  However, she knows it's a legitimate treatment and understands the limitation of my (very expensive) insurance policy with Cigna.  It seems no matter how much you pay insurers in the USA, they still don't want to cover reasonable treatements.
    Report / Delete Reply
    • Posted

       they still don't want to cover reasonable treatements.

      That Statement has a very familiar ring to it.   When you need help and that is why you pay insurance, 9 times out of 10 they wriggle out of things, one way or another.

       

      Report / Delete Reply
  • Posted

    I too am on 3mgm Rotigotine patches, I also take 2 bio magnesium tablets in a morning and 2 after my evening meal and they really do help. A friend of a friend recommened these, they contain 3 different  sources of magnesium and are said to help RLS. Pharma Noyd a danish company manufacture these,I buy online from them as not many chemists stock them. 60 tablets cost around £6. free and usually next day delivery, they are my lifeline!!!
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up