1. Community
  2. Brain and nerves
  3. Restless Legs Syndrome

Restless leg syndrome

Posted , 9 users are following.

deborah1964
deborah1964

Help I have been taking roping role for about 12 months for RLS and the side affects are quite severe , would much rather try something more natural /herbal , but  because of the severity of my RLS I'm unsure what to try any tips recommendations ideas very much appreciated 

2 likes, 12 replies

12 Replies

  • thomas24929
    thomas24929 deborah1964

    Posted

    Hello Deborah. I have quite severe RLS. I take 4 Pramapexole around 17,30. Since my Venlafaxine has been increased to 75 mg, my RLS has dramatically improved. I'm at a stage whereby it's probably as good as It's going to get. I am able to sleep. Hope this is of help to you. 
  • marilyn98768
    marilyn98768 deborah1964

    Posted

    It may be that my rod is not as severe as yours ,but it does affect my life and of course my sleep .a nurse advised me to try pure lavender oil mixed with either a skin cream or a base oil I mix about 6drops with enough cream to massage into my legs and my feet including the soles ,massage it in really well I do that before bed and it defiantly helps may be worth a try good luck 
  • martin45332
    martin45332 deborah1964

    Posted

    Hi

    I have just started taking tramadol(this week) and the RLS symptoms have decreased markedly. I am on 1.5 mg of clonazepam as well which I take when I go to bed. It is too early to say what the tramadol dose will be but at the moment I am taking 300mg in 2 50mg tablets three times a day. I have not suffered any of the tramadol side effects but of course it is early days

  • beagle
    beagle deborah1964

    Posted

    Ropinorole worked for me for a while and then ceased to be effective. I used other dopamine agonists, rotigotine patches had least side effects for me but all are quite nasty drugs and ceased effectivity after a few months. Gabapentin worked ok but was worst drug for side effects for me. I have now been on Tramadol 2x50mg at night for nearly a year and it works ok. I can get 3 or 4 pain free nights, 3 or 4 nights of insomnia (its only side effect so far) and 3 or 4 low level RLS nights eg up twice for half an hour. Don't know where to go next if this stops working! I keep watching diet/ activity/ bedtime etc to try to eliminate any other factors.

    Good luck with your ropinorole and hope it remains effective. Have you tried regulating time between medication and going to bed, I think there is sometimes an effect there?

    • alitom
      alitom beagle

      Posted

      I agree that dopamine agonists & other drugs used in the relief of RLS are nasty drugs  & from our experience (my husband suffers badly) the side effects are awful too.I agree also that most of these drugs cease to be effective after a while and we, like you, often say 'don't know where to go next if this stops working.' It pains me to watch my husband suffering without being able to help him at all.

           A couple of weeks ago someone drove out of a junction without slowing down or stopping & ploughed into our car.In the early hours of the following morning I had to make an appointment for my husband at the GPs out of hours surgery at the local hospital. I've never seen his legs so bad  - they were jumping about all over the place which makes me think there is a connection between RLS and stress/trauma.The GP on duty said she had no strong tablets to give him for his legs but gave him anti-sickness tablets as he felt at times that he was going to vomit. She mentioned taking quinine and some tonic water! I feel that so little is known by GPs about RLS. He's going through a very bad patch at the moment and I'm wondering if it's  the after effects of the accident.

    • beagle
      beagle alitom

      Posted

      Without doubt stress is a trigger. Just moved house and RLS was worse. Tramadol was a life saver.

      Good luck

      John

  • Boomiesmom
    Boomiesmom deborah1964

    Posted

    I was on Requip for several years, always fell asleep 1 hr after taking and had headaches BUT it did keep RLS under control.  In past few years I have had augmentation from requip, gabapentin after a short period of time working well, now one week on Rotigotine patch.  So far so good.  I do get nasty headaches from it (dr. had a CT scan done to be sure it wasn't tumor or?? - all OK)  Headaches are controlled by tylenol/aspirin/caffeine pain pills - over the counter or NASID/aspirin/caffeine over the counter.  Had bad headaches from requip as well.  But that being said - I've had a week of no RLS with the patch.  So pleased.  Some insomnia but not bad.  I had reached the point where I would start with gabapentin - no luck - add mild requip - no luck - Robaxin (muscle relaxant), no luck, Norco opiod 10 mg of late and finally valium to get some sleep.  I was up 5-6 times after trying to fall asleep increasing my meds.  Enough to choke a horse but desperate to deal with symptoms.  Praying the rotigotine patch works for a good long time.  I'm in the US and had to mention to my dr.about reading regarding the patch on this site.  She had to speak to a sleep specialist who said - yes it would be OK to try.  Something to think about if nothing else works - as I said so far so good, I'll take what I can get.
  • martin45332
    martin45332 deborah1964

    Posted

    Since I posted last I have seen a neurologist again and she put me on rotigotine (Neupro). I hadn't managed ropinirole or pramipexole but to my surprise it seemed to help. I was on a 1mg patch but also 100mg of tramadol and 1,25 of clonazepam. I have now had to stop the patch as it was causing rebound plus other side effects and am now on 300mg of gabapentin three times a day plus 100mg og tramulief which is an extende relief tramadol. So far so good although it is early days. Last night I had eight hours sleep interrupted by two loo breaks and I haven't had such a good night for a long time. Incidentally I have also bought some Halcyon bracelets but I did not find hem helpful
    • Boomiesmom
      Boomiesmom martin45332

      Posted

      I had great success with the Neupro patch for a short time.  But quickly developed horrible headaches.  Thought one night I was having a stroke.  Gabapentin worked well at lower doseage but augmented and had to increase.  I also went to 300 mg.  Be aware of side affects.  I couldn't concentrate, had almost mild psychotic episodes, couldn't talk coherently.  A friend warned me of side affects she had as doseage increased.  I'm sure others do fine.  Just be aware if you begin to have memory problems, concentration problems or the ever lurking headaches.  Hope you are one of the fortunate ones.  Sleep without symptoms is a true treasure.
    • martin45332
      martin45332 Boomiesmom

      Posted

      Thanks very much. I will notice the headaches as I rarely suffer from these. I have asked my wife to watch out for the memory problems as she is as likely to spot this as me. Having reported a good night's sleep last night was less good. After a few hours I could not really get settled. We shall see!
  • Boomiesmom
    Boomiesmom deborah1964

    Posted

    Gabapentin worked pretty well for me for a while.  I have to keep the doseage low as higher doseage made me a mental case.  Also Robaxin (muscle relaxant) helps me to calm the jumping and twitching.  Requip (ropinrole) worked and I still use it ocassionally but in very low dose as it leaves me with severe headache in the morrning and back pain across the whole middle of my back if I take more than 1/2 of a .25 dose.  This is one lousy disease, that's for sure.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.