I have suffered from RLS for some twenty years many of which there were no drugs that would help or indeed a GP who took any interest in the condition. Over those years the only relief that I could get was to have a hot water bottle on my legs when I retired to bed. The condition grew more severe in the past six years and with the help, for the first time, from a new GP I was referred to a consultant. Ropinerole was at that time new to sufferers of RLS, however it was that medication that the consultant agreed to prescribe. I took 0.5 mg increasing to 2 mg per day twice a day which did relieve the condition. When I say relieved the condition there were still times when RLS kicked in (as always in the evening and in either left or right leg). It was some twelve months after my first visit that I had to return to the consultant as the condition was once again getting worse. I was again advised that I should increase the dosage to a maximum of 10 mg per day which I did, but there were times when the dosage of six mg at night - when the RLS was severe, resulted in me hallucinating and falling to sleep very suddenly and for very short time. The hallucinations were frightening! My sleep pattern was terrible with possibly a maximum of four hours per night. Some three weeks ago I returned to see my GP as my condition was very severe and it was obvious that the Ripinerole was not working as it had at the start of the treatment.
I had read about Gabapentin and the fact that it can help with RLS in some cases and discussed this with my my GP. It was agreed that rather than revisit the consultant I should take the Gababentin - 300 mg three times a day and see if that helped my condition.
Having been on the new medicine for three weeks I have to report that my RLS appears now - thank God - to be under control. I am sleeping well and the terrible problem of legs that prior to the new drug, would twitch uncontrollably for hours on end, are now much better.
The Gabapentin for the first week gave me bad nightmares and certainly would send me to sleep very suddenly (as did the ropinerole)_but once my body became used to the drug this problem abated.
I should say that I have had blood tests which my GP ordered and which I am awaiting the results of when I see my GP tomorrow - 6 March 2013.
Over the years I have found that it does help to take the mind off the RLS if I was occupy my mind with an interest that focused my mind. I took up painting and photography which I would turn to even in the very early hours of the morning when RLS was about to send me insane.
This is the first blog that I have ever written in the hope that other sufferers of RLS will find the article of interest.
Written by
arwyn
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Hi arwyn, i am so glad you are off that dose of Ropinerole, it was way to high for RLS, i am not surprised you suffered badly with side effects Did you stop the Ropinerole suddenly or wean off it when you started the Gabapentin. The nightmares when starting the Gaba, could have been because you still had the Ropinerole in your system. If you stopped the Ropinerole and didnt have any problems from doing that, you are one of the lucky ones, as most get worse RLS, when the dopamine drops from the system.
Gabapentin is for some a god send and people can use it for years. So, i am happy you have found a med to help you...
Hi Elisse, The day before I went top see my GP I was on the Ropinerole and after seeing him went onto the Gaba that evening so I had no weaning off of the Ropinerole at all. I note your comments and must therefore be one of the lucky ones! I am seeing my GP tomorrow for the results of my blood tests and to advise him of how my RLS is after the new medication. Arwyn.
Many thanks for your comments. I will post the results of my blood tests as there may be something there that could be of interest to those, like me whosuffer this awful condition.
Hi arwyn - it's good to hear you've found relief! Gabapentin works for me too -I'm on a lower dose than you, only 200mg at night, and have been for 6 months, but I can now sleep at nights and am a much nicer person as a result.
Yes it is a relief not to have to worry about how to cope with RLS not only at home but out in company, I found that the cycle of not sleeping and of having RLS made my condition worse. Tiredness would inevitably result the legs kicking in in the evening and me having to lie on the floor in order to try and get some relief.
I just hope that the Gaba continues to work for me and only wish that other sufferers could get similar relief. I am amazed when reading about RLS of the number of people who suffer this awful condition.
I have been trying Gaba 600mg every night with Ropenerole
as well but only night even though my doctor advised to take take one in the am , I will try that from now on. I have been dealing with for about 18 years, had horrible nights, staying up , crying all nights. Please do report when see your blood test. Thank you so much.
I am pleased that I decided to write this blog(my first ever) and the response has been very satisfying, The problem with RLS is that one feels so alone and out of control. Prior to going to see my GP I tried to find out the best consultant in the UK or even abroad as I was so desperate to find relief. Despite my attempts it is exceedingly difficult to find such a person. Do you not find that the Gaba plus the Rop gives you hallucinations as that was the case with me when taking 8 mgs of just Rop alone! Have you tried doing something to take your mind off the RLS ? as I said I have taken up art which does help.
Just to say, the higher the dose of some meds then the more likely for side effects, your high dose of Ropinerole is probably the reason for your hallucinations. Some people take a combination of meds and that way you can hopefully keep the doses lower. Also, as you were having to up the dose every so often, then you were experiencing Augmentation, thats when the med stops working, the RLS gets worse and to get the same relief you up the dose yet again. When augmentation occurs then its best to come off that med.
Lots of us, do something for distraction, while your brain is concentrating hard on something it seems to help with the RLS. I use music at night, my CD player, earplugs and some music which is soothing and i concentrate very hard on the words and the actually music, i have it quite loud, seems to help to block the RLS out and i can usually drift off to sleep. Sometimes, nothing works, and RLS will break through what ever i try.
I agree that doing something that concentrates the mind does help. I found that it was hard sometimes to concentrate and overcome the urge move my legs. I have found that using my iPad with headphones did help concentrate the mind and also help going back to sleep! Finally I have to say that over the past few years and when the RLS was bad I had no choice but to move into a separate bedroom as that was the only way my wife could get a good nights sleep herself. Those who do not suffer from RLS have no comprehension of how debilitating the condition is.
Hi. Thanks for sharing this. I just wanted to say I too have had success with gabapentin. Previously I tried mirapexin, which had horrible side effects. But I have been taking gabapentin 400mg at night for 3 years and feel that it has helped enormously. I have some side effects from the gabapentin: I think my memory for names and words is affected slightly, but this, for me, is a small price to pay for the relief I get from restlessness.
Thanks for your comments. I was told by my GP that if the Gaba did not work then there were other drugs that I could take but in his words" I cannot prescribe these so you would need to go back to your consultant as they are strong drugs" could be that he was referring to mirapexin. Anyway I am pleased that the Gaba works for you as it appears that it does for me. I only wish that I had been able to find this site years ago as it would have helped me overcome the feeling of loneliness.
Hi, i would think your doctor is talking about the strong pain killers. But, my doctor here in the UK, has let me try them in the past. That has been Tramadol, and liquid morphine, (oramorph)
The Mirapexin is in the same family as the Ropinerole, a dopamine agonist, so shouldnt need a consultant to prescribe those.
But as the Gaba is working so well for you. Hopefully you wont need to change for a long time...
Hi, I have just been to see my GP who advises me that all my blood tests were fine. He was delighted that the drug was working for me and said that he (as the senior partner) would pass on the results to his fellow doctors. It was suggested to me that rather than take the mid day dose of 300mg I took 600 mg ion the evening which was the time that, in the past, RLS kicked in. I may well try this. I do hope that my comments help others who have RLS.
How expensive is the gabapentin I find incredible relief with the Neupro patch in every way except the wallet! Just had to pay $782 (US) for a 3 month supply AFTER they gave me a "discount". Sure would be nice to find something as effective but more affordable!
Also - that "distraction" issue.... I've heard that the working brain produces dopamine but when relaxed (e.g. trying to sleep) does not and henceforth the RLS. I get frustrated with well intentioned people suggesting that if I just walked or knit or balanced the checkbook I'd be OK. This is true - but I'd rather SLEEP than do math all night!! On the plus side, my checkbooks are always balanced!
I live inWales UK where all prescriptions are free!!! So cannot tell you the actual cost. I have been told that ropinerole is an expensive drug so would assume the same for Gaba. Thank God for free prescriptions when you say it costs you 782 dollars.
I was taking temazapam some night to help with sleep but even then i had very little sleep. I certainly found doing some painting helped get my mind off the legs but even then all i wanted was a good nights sleep. The gaba has certainly helped me and i am going back to my GP this afternoon for a check up. Hope you can get Gaba at a reasonable cost - you could consider moving to Wales!!!!
I used to wake up middle of the night very scared in the beginning but not all the time any more. Thanks to my sister who is a great doctor who guides me thru this serious problem of my life. I had suicide thoughts in many occasion because of my family and their love I am still living. tried a lot of things including soap in bed, mustard . You name it , I tried it. Hoping someday there will be a cure or at least side effect free medication so all the people that have RLS will be free.
Hi It is wonderful that the love of your family has helped you through difficult times. Like you wish that one day there will be a cure for all who suffer from RLS.
I have been reading all the responses to your original blog, and for being a 1st timer I think you are very confident, I am also pleased that you are responding well on Gab as everyone is calling it, as yet I have not tried it, so will have to see what my G>P> says? I am having great difficulty with RLS but I am now finding that I am getting it in my arms too, which is equally distressing as in your legs, you are definately right about finding something to do and to keep your mind active, but I find that it is soooo tiring. I have also noticed with my RLS that if I have been busy walking around and driving etc, that when I do come to sit down and have a cuppa and a sit down, it is not very long before the dear legs start,so up on my feet again, and walk around somethimes reading, sometimes working, and then it passes off a little, like you have said, and other people too, unless you have RLS you really donot know what all the fuss is about. But Wow I think it is one of the most debilitating and depressing thing you can have, because you always seem to be on the miove, and relaxing does not come easy. Hence my name Widgeylegs, as that is what I call RLS. I am very please for you, and like you all my recent blood tests came back superb, and in the Dr's words, with the MOT you have had, you are doing very well, so how annoying is that!. I used to sleep very well at night but just recently it has not been so good, probably as I got used to my dosage of Ripinirol, which at times I have to take by day and definately at night. I have had 40mg at night and then I found that I was very drowsy in the morning, so reduced them gradually, but think I have prob gone to far, I am beginning to wonder if the reason I get RLS in my arms is because I am typing quite a bit and am right handed, who knows, I have stopped trying to fathom out that reasons. I also get a lot of help and support from being in the forum, I have never done it before RLS but took the plunge some weeks ago, like you the loneliness and tiredness makes you feel sad, and not good company, but since I have been resplying to some of the messages etc, I find that it is nice to know that I am not the only one, and that there are soooo many of us suffering together, and no longer in silence, we now have a whole load of understanding friends. Cheers for now.
I would certainly encourage you to ask your GP to try you on Gaba which i only came across when i had shingles. The gaba was prescribed to help with the pain. At first i was given the patches which i was informed were very expensive on the NHS but they did little for me hence the Gaba tablets. It was only at that stage did i, by chance,read that Gaba was also used for RLS. As i said to my GP this afternoon the RLS was so bad that, had i been able to have an operation to relieve the misery i would have gladly paid for it but as we all know - no such an operation is available. I do get the impression that more GP's are aware of this condition which is confirmed by my GP. God willing there will be a cure for all soon. Have you tried taking a hot water bottle to bed as i found this did help to some degree. Keep in touch.
I think the reason it starts in your arms is because that's where the brain feels like attacking and making you CRAZY!!!!! I swear there's no rhyme or reason.
How right you are, i only wish that i had knowledge of this blog all those years ago. You do feel that you are the only one in the world who suffers from this awful condition - especially in the early hours.
Absolutely ! My poor Dad suffered in the the 70's & 80's when computers were not around.
How I wish I could have helped him.
It's great to try & help one another with bit's of advice & knowledge, it feels empowering, when you're not a nurse or a surgeon or anything high flying like that !!!
OK! I know this is ridiculous BUT I have been advised by a friend to sit on pillows cos of a bad back recently & discovered it helps stop the RLS starting late in the evening......go figure ??????
All that I can say is that prior to taking Gaba and when the rls was bad i foung relief by lying on the floor and stretching my legs out fully. I would also grab mmy feet and pull my legs up towards my back. In my opinion anything that you can do to relieve the symotoms should e tried.
Not sure that we need another comment here, but for those who do not find relief with Gaba alone, as I did not. And for those who do not find relief with the Neupro patch alone, as I did not. There is help with both Horizant (which is slow release Gaba) and the patch together. But the Horizant is just about as expensive as the Neupro patch. I am desperate for an answer to these overpriced meds. Last October I bought Horizant for 32.00 (30 tablets). This past month the same cost me 116.00 and that is with insurance.
I'm a bit late onto this as I've only just joined, but have been prescribed Gabapentin for nerve pain and found that as an added bonus it does actually seem to help my RLS. Have recently run out of them accidentally, and was driven demented last night with restless legs, arms, and the worst bit for me - RLS in my back and down the sides of my ribcage
Very late reply to HeathB - sympathetic reply to everyone else -NEVER ever run out of your tabs for RLS! I have meds for heart problems, blood pressure and diabetes :-(, and if I ever run out of these [which I obviously try not to!] there are fewer worries, but if I ever ran out of Gaba I'd be down to the pharmacist with a machine gun demanding some. One night without Gabapentin and I'm climbing the walls.
Great to hear that Gaba does help with RLS it has certainly helped me since I started some six weeks ago. I do find that rather than take 300 gms three times a day I take one tablet at lunch time and then two about six pm. I am sleeping so much better since being in the tablets and hope that will be the case for you. Since joining this site I am amazed at the number of people who suffer RLS and if you take into account those who are unaware of the site then it you can appreciate the true extent of the problem. It is comforting to see that we are not alone in trying to live with this debilitating disease.
I am amazed that u were able to withdraw from Requip so quickly and without problems. it took me 3 months to get of Mirapex, which i had been taking for 6 years
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Hope it continues for your!
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