New to the sight

I'm new to this forum and was diagnosed with RLS 3 or 4 years ago. My Manchester specialist put me on Ropinirole which shifted from .5 mg to 1 mg in the first 6 months. 6 months ago I started to have severe symptoms. The specialist sent me to the local doctor who raised my dose to 1.5. All ok but now I'm suffering and getting problems in my elbows also. Paracetamol and hot water bottles help but I'm now losing sleep. Reading posts here I'm concerned about the ropinirole and that the drs don't seem to know what to do. Moreover when I related to the specialist when he first raised my dose that I had heard that the drugs become less effective over time he dismissed my comments as nonsense. Does anyone have advice on next steps to head this off before things get worse?

33 Replies

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  • Hi hang in there hold tight, finding this site has been like winning the lottery :) advice will come and take from it what you will also do a bit of digging on here. Good luck lhanny66

  • Thank you

  • I say get a doctor who specializes in RLS. RLS does not get that bad that fast. The pain was probably due to the Ropinirole, kind of a rebound. My sleep doctor knows more about it than my neurologist. The sleep dr wanted me take an extra Ropinirole at around 2 a.m. I didn't want to do that because I had such a hard time sleeping as it was. I stayed awake all night for a couple of nights and didn't take the Ropinirole. Then I tried to stay off of it for a while, but the RLS got so bad again that I had to start taking it again. Haven't had any new problems with the Ropinirole, but I had to start taking a muscle relaxant, Baclofen due to multifocal dystonia. I also take Gabapentin at night and Temazepam to help me stay asleep. Hope that helps. By the way, FYI, RLS is caused by a lack of Oxygen in the substantia nigra in the brain. Some people take Iron supplements for RLS. I also take Turmeric/Curcumin (50mg/400mg) for pain. It helps me a lot, but I recently had to start taking more, due to a decrease in effectiveness. Hang in there!

  • Thanks for both the info and the support.

  • Research " augmentation " and change your unbelievably ignorant specialist and doctor.

    Do not allow them to increase the Rop , and ask to be referred to a sleep clinic which has experience in rls.

    Depending on where you are , there may be a dr good on rls. Kaarina and Pippins have lists.

    Cheers.

  • I'm in Manchester and with a sleep clinic where the specialist told me he had never known Ropinirole cause problems. Thanks for the advice as I will now argue against an increased

    dose and ask for an alternative. I just need to find a decent practitioner to support so thanks for the advice.

  • This is good but impossible advice for a lot of us in the UK. We certainly can't ask for a particular drug and if I mention augmentation and say I learned about it on the net I will just be thought of as a hypochondriac. Not every GP is like this, I got my REM behaviour disorder and a sleep clinic referral that way. This however led my to my Neurologist who has me on a high dose of Ropinerol. We can't choose which GP we see, it's a take it or leave approach and with no other surgery to go to I have to be careful.

  • Yes I agree and if the sleep clinic don't believe in augmentation then it's a big problem.

  • rls-uk.org/news/augmentation I hope this link helps you.

  • Thank you

  • Do you have a specialist list that covers Manchester UK? I have sleep apnoea also so went for this treatment initially at Wythenshawe hospital where they eventually discovered the additional RLS problem. I was wired up and apparently kick out every 90 seconds. So my specialist may be more expert in sleep apnoea than RLS? Certainly he doesn't seem to like patients who do their own research.i am booked to see him again in a couple of weeks so will take this article with meat the very least. Although I can see people in a far worse situation than myself on this site I'm getting desperate for a decent nights sleep.

  • Hi,

    I have been down the same path as you. After several years I ended up on 4mg of Ropinrole per day in a slow release form. Eventually that became ineffective and my neurologist added Lyrica to the prescription. I have done all the other things like avoiding alcohol and caffeine, fitting blackout blinds in the bedroom, establishing a regular bedtime and so on but I still hit a really bad patch in June this year when I could only manage 2-3 hours sleep per night and I had the RLS sensations through my entire body even during the day which was a new development for me. My saviour has been Magnesium which various people reported here as being effective. I started taking the recommended daily dose (even though my blood test showed my Magnesium level to be normal) and this had an immediate effect on my sleep which has now moved back up to around 6 hr per night average.

    It has become clear to me through this site that everyone's RLS is unique and so the solutions are not always right for everyone but at least the site is full of possible solutions for you to try.

  • Thank you for this information. This is a weird condition indeed but this sounds well worth a try. I too have cut out caffeine as far as possible, reduced salt especially after lunch, bath before bed and use hot water bottles on my legs, take paracetamol etc etc. Like you the RLS kicks in much earlier than it used to - basically as soon as I sit and rest. Anything that helps is worth trying (within obvious reason) - also this explains the differing solutions people seem to be finding. Thanks.

  • Magnesium has helped me in tablet form and in an oil form I make up and rub on my legs if it gets really bad. I would never have known about it if I hadn't joined this amazing group.

  • Thanks for this advice - I'm going to be trying it

  • I agree about the magnesium. It is also helping with the circulation problems around my ankles. I can walk much farther after a few months of magnesium malate.

  • I'm sorry you had to go through that. May I ask what the dose of magnesium is that you're taking.

    I'm interested in adding it to my ever growing list of supplements that I take every day.

    Thank you

  • I am taking 375mg per day in total. I take 2 tablets per day, 1 morning and 1 evening. The tablets contain Magnesium Oxide and Magnesium Stearate and cost €10 in Boots for 180 tablets. I heard that Magnesium Malate was better absorbed by the body and tried that. It is much more expensive and I find the cheaper Magnesium works just as well for me. Talking of growing lists of supplements I have just had to buy a bigger pill sorter.

    Good luck with your own search for a solution to the RLS symptoms.

  • It's incredible that your specialist doesn't know about augmentation. Just about everyone who has been taking that family of drugs has experienced it. Lots of GPs don't know but a specialist. ...!

    Try to change to someone more knowledgeable.

  • Yes I'm beginning to realise this is deeply worrying that he doesn't know! Thank you.

  • Hi Ammy this may sound to easy but drink mor water in the day a lack of wayer can make rls worseand up your iron. i went off all my meds do to side effects loosing my hair.6 months ago and for the first few months i basically selpt in a hot bath and then hot pad luckly i would have good nights and very bad ones. i did notice that excusse me for this but around my menstrual cycle my Rls would get exstreamly bad dr ran some test and i infact did have a big iron deficiency along with a calcium deficiency. the bad nights are down two a few a month now but winter is comeing and cold alwsys makes my rls worse . good luck hope this helos some one

  • Thank you. I have had stomach surgery so am on calcium and iron supplements - also just beyond menopause but I relate absolutely to sleeping in the bath. I'll watch the water intake and keep it high. Thanks so much for your reply.

  • Hi, I've just come off Ropinirole after 6 years. My medication had increased over time to 4mg. A month ago they suddenly stopped working and made my RLS worse. I've just started a new medication but so far it hasn't worked. I've had several nights with no sleep and others where I may get between 2 to 4 hours. To say life's a bit miserable at the moment would be an understatement. But me and the doc are working on a solution and hopefully life will return to normal soon .

    Good luck

    Ray

  • That sounds miserable - I hope that they find a solution quickly.

  • With me I have needed increases in dosage and still have leg RLS and like you elbows. I can't prove it, but I think the med is making it worse. I want off all RLS meds and then see what my level of RLS really is. I'm sorry I ever started taking them (Carbadopa/Levodopa; Ropinerole)

  • Nadra you are having augmentation please put it in search and follow the link provided by Kaarina higher up this thread x

  • rls-uk.org/news/augmentation Here is the link again.

  • Thank you. It's an interesting read.

  • I too have started to take Magnesium tablets and they have certainly helped decrease the RLS symptoms although not "cured" it (nothing will) As some people on this forum know, I am completing a chart over about 6 months (which I made up myself) to see what triggers the RLS more. Good luck!

  • Good idea - I had wondered about a diary to chart triggers - are you getting anything concrete from it?

  • I am three months into it but want to try six months to make sure of my results. I will let you know (whoopps! Somehow I have turned italics on )

  • I am 3 months into it but want to try 6 months to make sure of my results. I will let you know.

  • Has anyone here been prescribed neurontin as a replacement for ropinirole as my sleep specialist has just done this?

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