Answers at long last

Last week i went to see a neurological 'expert' for the first time since diagnosis in 2005. Even then the 'expert' told my doctor i had diagnosed myself as having RLS and he 'tended' to agree with some reservations as to some of my symptoms. To cut a long story short i ended up taking 24mg of Ropinirole a day and its been causing a lot of problems this past year. So i bit the bullet and asked to be referred back to the hospital. I was terrified they would just take me off the tablets and leave me hanging yet again. This time i was very surprised to find the consultant was someone who actually knew what i was talking about. He is prepared to wean me off the Ropinirole and onto another tablet but doing it slowly. To my surprise it wasn't just a case of reflex actions he looked at either. He is doing a battery of blood tests and he is also arranging a full head and body scan. It seems when he did the little bit with the hammer he is worried that my reactions are too sharp and too fast. Not sure what that's all about. When i explained that i had suddenly started dropping off to sleep he knew exactly what it was. Told me its a classic symptom. That in itself was a relief as it was really beginning to worry not just me but my family. In all the years i have had this horrible thing i have had to fight all the way to get somebody to believe it exists. But persistence is now paying off. I don't expect any miracles but at least i might now get some answers. That and some relief is all i can ask for. In searching around the various sites to get info to take with me which absolutely astonished me. When i think back most of it started around the time i went onto the Ropinirole. High BP, Heartburn, constipation, dizziness, concentration, anxiety and now lately the falling asleep suddenly and insomnia. All of these could be related to the meds i am on and until i came to this site nobody gave me any warning about them. In fact my doctor even suggested the sleep problems were psychological in relation to having watched my sister die from cancer last year. Thanks to this site i am going in now armed with more information and with a fighting chance of getting somewhere near a normal life. Just wanted to say thank you to all of you for all the stories and encouragement you give. I have had this since i was around 10yrs old. It is hereditary from my fathers side and has woven its way through the family to include my grandchildren. Now i can refer (and have) them all to this site and who knows in a few weeks might even be able to give them some answers. Till then all i can say is if you have a GP who brushes you off then do what i did eight years ago and insist you be referred to a neurologist as soon as possible. If they wont do it change the GP to someone who will listen. Good luck to you all.

15 Replies

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  • If you are taking 24mg of Ropinerole i am not surprised you are having problems... Ropinerole for RLS, should only be 4mg at the highest dose.... Suddenly falling asleep is listed in the leaflet as a side effect. Weaning off the Ropinerole will be hard to do, all that dopamine you have been getting, when reduced, your dopamine receptors will object big time which will in turn send your RLS nuts. Not trying to scare you, just letting you know what most likely will happen, so you are aware. I wonder what the other pill is you will be taking... ??

  • I am aware i am in for a hard time lol thanks Elisse. But i will fight like mad to get there. I am trying to remember the name he gave the new pills. Not sure but its another of the Parkinson ones. Could be Premapaxol but i wouldn't swear to it. I just know that no matter how hard it is i have to get off the Ropinirole. I hadn't realized until i came on this site about them and as its years since i started them i hadn't read anything about the side effects i a long time. It wasn't until you and the dragon answered a query i put on that i began to understand how bad the situation was. I had to put up with no medication for forty odd years so if i can fight through that i will fight through this. I am determined to do it. I have a great family who understand and will support me and i have you all on hear giving encouragement. That will see me through. Thanks again Elisse.

  • Let us know what you get given, it might help if it is another dopamine one in getting off the ropinerole. Yes, we will be here when you need to scream that you are having a bad time.

    Good luck....keep in touch...

  • Thanks Elisse will definitely keep you updated and thanks again for the support.

  • Yes, whatever you need for support, we are here. 24 mgs of Ropinerole is a humungous dose for an RLSer. 4 mgs is the max dose for treating RLS, and some doctors like to up a bit from tehre, but not 24 mgs. at least if it is Pramipexole you are taking next, switching and weaning will be easier. But, your body is going to object to be taken down off 24 mgs, that is for sure. and, an FYI, Pramipexole's lowest starting dose is .125 mgs (not a typo), so the maintainance dose is much, much lower than how Requip is dosed out. 24 mgs is a Parkinson's dose, and it is likely you being on that high of a dose that you are experiencing augmentation/worsening of symptoms, because the dopamine meds can and will turn on you. There is a maintainance dose for everyone, once you find the right one. you do have bit of work to do, and you do sound like you realize this is going to be tough, so vent any time! ;)

  • Lol thanks nightdancer for the invitation to vent. Yes i know i am in for a tough time. I expect it to be as bad as when i tried the spray to helm me stop smoking. If i look for it to be that bad then anything less will be a bonus. I spent the night pacing my flat ranting raving angry tears one min and sobbing feeling sorry for myself the next. It was hell but if i have to go through that to get off these then i will. Stubborn thats me. I hadnt realised just how high a dose i was on until i came on here. As for augmentation yep that and this site are what made me ask for an appointment to review everything. Lets hope i dont have to come on and rant too often wouldnt want to put others off lol Thanks again for the support and i wont forget the invitaton

  • Neupro patches help many sufferers too (though not all) . I take 4 mg of the patches at about 6 pm and 0.5 mg (half a tablet) Ropinorole at about 9 pm and I usually get a good night's sleep. If I get insomnia at about 3 - 4 am I will take another 0.5 mg Ropinorole but any more than that and I am like a zombie the next day so I can only imagine what you are like on 24 mgs ! Good luck and hope you find a good solution. It is trial and error for all of us till we find the meds and doses that suit us. x

  • Avosyl, I wish you all the best and strength to get off the ropinirol. I myself had that medicine for years and it was a hard time to get off. I now use pramipexole: 3 tablets (o,26mg) at 7 p.m. and they work 24 hrs. I can sleep again (for a short period, but still,) and during the days I have no RLS, during the evening I have a bit RLS but I can handle that.

    It must be a relieve for you that there is recognition for you by your neurologist, for many people that is part of the problem: no recognition!!

    Let us know how you're doing!! Lot's of succes....

  • The Neupro patches just didnt touch it for me eileen49 and funny thing is the Ropinirole didnt leave me feeling like a zombie. It is only recently that the suddenly falling asleep or being wide away all night has kicked in. I think the biggest part of last week was having someone recognize the problem. That can make such a difference as to how we ourselves handle it i think. I have read a lot about how so many of you are awake all night with your legs arms etc going. I have no idea why but although years ago i used to have a night problem mine is now all during the day (unless theres a conflict with something else) so in that way i guess i am really lucky.It took years to get a doctor to listen to me when i said it wasnt cramp. In the end i printed every bit of info i could find on RLS and put it in front of him. He gave in and referred me to a neurologist then lol. Even so that consultant didnt know it could run in familys and kept my notes to read lol. So you can teach even consultants a thing or two. The new one i have just seen already knows so much about it that i feel at long last i might just get somewhere. When i read about those whose GP's brush them off i get so mad. Its time they realised we all of us know our own bodies and they dont know it all. I intend to attack this new stage with the same determination and i will get off them no matter what. I can only say a big thank you to you all for being there and supporting me.

  • RLS gets worse for some as we get older....and another reason you have it during the day time aswell, is probably because of augmentation from the ropinerole.

  • always a good sign to know there,s people out there that will listen agree that you need to keep going back to doctors etc they are begining to listen and help and find answers to help suffers, after years of suffer with no sleep, sleeping downstairs rolling around the floor i now have found a doctor who has helped and now getting some sort of sleep not perfect by no means but some sleep better than none.he.s now referred me to a consultant [ it did take a video of me at my worse which my wife and children took one night i to was shocked how bad i actuly was at night ] so lets keep fighting and HOPE one day relief will be available for all with this dreaded curse

  • Glad to hear that at last someone has listened and is trying to help you. The relief that someone is taking you seriously after all this time can make such a difference. It takes some of the weight off your shoulders and if your like me stops you from thinking its you thats the problem. I honestly was getting to the stage of thinking it was all in my head lol. Perseverance and stubbornness pay off. One day maybe there will be relief for us all and thats all we can hope for but as you say lets keep fighting. It pays to do so.

  • I have been referred to a neurologist early March after suffering for with RSL for nearly thirty years. My doctor has recognized the problem with RSL for most of the time.I was only once given medication that worked it was Pergolide which is another for Parkinson Disease

    but it had disastrous effect after a length of time on this medicine it can make you addictive to certain things mine was gambling which had a terrible effect on my family who were very supportive my Doctor weaned me off the medicine very carefully ,who saw my whole family instantly including me when the problem was first discovered. No medicine has been as good as Pergolide for giving me a good nights sleep. My doctor studied all the patients who were on the medicine at their surgery and discovered three others who had addictive problems not necessarily with gambling. SO PLEASE DO NOT TAKE ANY MEDICATION RELATED TO PARKINSONS DISEASE

    Tunstall

  • Totally understand what you are saying tunstall.....I'm not going to use those drugs until there is absolutely no alternative!

  • I understand your concerns Tunstall. But the addictive problems do not happen to everyone. Many of us use the dopamine meds. which are used for Parkinson's Disease without any addictive problems. I use the patch right now, and i have taken pramipexole before and i am fine. So, we just have to be aware of what MIGHT happen, and try to see the signs or a family member or friend who would notice. I am sorry you personally went through such a bad time by taking them....

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