Worse night ever

I have just had the worst night ever with my Rls and like you all I have had lots. My gp refused to let me try the neupro patches as according to him they are not licensed in the U.K. He gave me Clonazepam which within an hour of taking it my legs were horrendous and it went on all night.I had no sleep and the pain through moving them all night drove me insane. Although the ropinerole had stopped working as well as they did I think I will have to take them again tonight..Hate this horrible disease. Sorry for ranting !!!!

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  • As romany has said the patch is licensed to be used in the UK, has for the last 3-4 years. More likely he doesnt want to give you them as they are exspensive.

    I also didnt get any sleep last night and also had alot of pain from the RLS. Feeling like a zombie today. :(

  • Thanks both I will be going back to the doctors next week,so annoyed he told me that I'f the Clonapapam did not work there is nothing more he can do. Feel awful day like you Elisse,let's hope we both have a better night tonight.

  • Hi, bvigari, i slept well last night, thank goodness. :)

    Your doctor really doesnt seem to understand the treatments for RLS. Have you tried all the other medications that are available for RLS, ?? I know some doctors will try all the other meds first that are cheaper, before they give in and let patients use the patch. I have a really bad time when taking the RLS meds, mostly because of side effects, my doctor is great, he has let me try anything i have suggested to him including the patch.

    So as someone else has said, if you dont get the treatment you deserve so you can get relief and sleep then change your doctor. Your health is important, and if a doctors isnt going out of his way to make sure your health comes first, then time to find one that will.

    I hope you slept better last night.

  • Most likely he told you that, because "they" want you to try everything before the most expensive med. They are starting to play that game here in the US, telling our doctors what they should and should not prescribe. It has been a merry go round, as far as proving that I have tried every med on the list. IN the UK the patch has been available all along. IT was pulled from the market here for a couple yrs, then after they "fixed it" so it would not have to be refrigerated, they put it back on our market, calling it a new drug for rLS, when in fact they only reformulated the same one for storage issues. It is a dopamine agonist, juts like Ropinerole and Pramipexole, but in a time released patch form. But, it is the same class of meds, so though you should try it if you can, it may not do to get too excited, because you have been taking Requip. AND, if you stop a dopamine agonist like Requip suddenly, it is VERY likely that the sudden drop in dopamine will kick up your RLS more anyway. trial and error. But, the neupro patch is the same kind of med. The pill forms also have a time released formula, FYI, and the patch seems to have "sticking issues". If it doesn't stick,. it can't work. some people love it, so all you can do is try. Vent away!!!!!! ;)

  • Wishing everyone a peaceful night and rant here any time you like.!!!!!!

  • Don't apologise for ranting, especially since 5 lines of question is nothing like long enough to constitute a rant.

  • Hi Bvlgari,

    I very much sympathise with you as other have. The first thing to say that i agree your doctor does not want to prescribe them as they are expensive. My wife had shingles and her doctor would only provide three patches and that was after seeking permission from the senior doctor!! I read on this site that a lady in the States paid 750 dollars for three months supply. In saying all of this my own doctor told me only two days ago hat Gaga is about seven pounds sterling for 100 tablets and as he says " that is a cheap as chips". What would i do? CHANGE MY DOCTOR TODAY. if your existing doctor refuses to put you onto the patches or indeed ask him for he Gaga tablets. If he refuses to do anything mire for you then i would advise him that you will report him to the medical council. I am fortunate as my GP suffers from RLS so understands how debilitating it is. Sorry to sound a little strong in my comments but you are the one suffering not the doctor so go in there and kick a..

  • Hi Bvlgari, what a rotten time you're having, no sleep AND a rubbish doc!! As Arwyn says, vote with your feet and get a doc who at least knows what they're talking about and is on your side. But maybe a little re-education of your current doc maybe satifying, so go see him armed with the RIGHT information and maybe you'll get a result. If he doesn't come across then maybe a letter to your local 'Family Practioner Service' might shake him and his practice up a bit. Good luck whatever you decide to do and here's hoping for some peaceful nights for you and all other sufferers.

  • Hi I use the neupro patch I am up in Cumbria and I have no problem getting it . I hope you get sorted out and get some rest soon x

  • Hi Bvlgari, go and find you an other doctor!! The neupro patches are very good. I wish you a beter night tonight!!

  • Thanks everyone it's nice to have people who understand what I am going through. Did have a better night took 1mg of ropinerole before bed and although they have not helped recently they did let me sleep a couple of hours.

  • If a GP tells us that a product isn't licensed, check with the local Pharamcy ;-). Usually it's because the drug is expensive to the Practice!!!! I have had 3 good nights - can't eat bananas any more due to burning in the mouth so went to Nurofen 2 at 8.00 p.m. I haven't taken any at night since Tuesday ............ have you tried laying with your legs above your hips?

  • hi bvlgari ive just read your blog i had the same problem 2 weeks ago when i came off ropinrole and was put onpramipexole i had 2 nights of hell and was tempted to go back to ropinrole but was advised on this blog to stick it out and so i did and i must say the pramipexole are working great ive been taking 254mg and had no bother except for a little while in bed but nothing like it was before i got a lot of pain through day and also when on nightshift but that has dissapeared the doc has just gave me 350mg to try to get rid of it completely have you tried pramipexole there good for me it seems like diferent medication works for diferant peaple i hope my pills carry on working for me i feel great and i hope you get sorted and get some sleep goodluck

  • No-one seems to take sleeping tablets?

    I take Zolpidem an hour before I go to bed & then a couple of Melatonin when I lay down & I go out like a light !

    It's when my sleeping tablet doesn't work, once in a blue moon or when I get a 'bout' I get the RLS !

    When I get a 'bout' of RLS it starts when I'm sitting watching TV in the evening.

    Thinking of all you guys who suffer SO badly & wishing & I had a 'magic bullet' !

    More news of my 'escape' back to the US......I HOPEFULLY jumped through THEIR last hoop this week, went for a medical, now have to wait to hear from the Embassy.

  • Lots of us take sleeping meds, and melatonin. I have for years, and I do know the melatonin helps me fall sleep better. It works bets if taken 2 hrs before you wnat to be asleep. In the states, zolpidem is ambien for a brand name. I was sleep walking, sleep talking, sleep shopping, and sleep eating with that med. so, I take different class of meds for a sleep tablet, Flurazepam/Dalmane. That one works the best for me. without other meds, I would have RLS 24/7, and I rarely go out like a light. RLS comes in levels of severity, so you are pretty lucky. :)

  • Hi bvl,

    You rant all you like ! The ignorance of some docs about this condition is horrendous and frightening really. They have no idea how distressing this condition is. Physically it's painful and exhausting, mentally it left me living in daze. Both I and my family thought I was crazy. I was so knocked off during the day from lack of sleep I would walk out in front of cars, into walls and slur my words. I would be walking around all night not knowing what I was doing except that I could not stand the RLS and the jerks. It could successfully be used as an extreme form of torture. Even very strong sleeping tablets, Mogadon, which could knock a horse out, could not give me any sleep.

    I'm on Ropinerole now. It works for now, thank God, though I do get the odd breakthrough.

    Hard though it can be, please stand up to your GP. Either keep pestering them, often, go armed with lots of info or get rid of them. This condition SEVERELY affects your quality of life and that's worth fighting for. Good luck.

    Lea

  • PS I had to slowly build up to 4Micro grams of Ropinerole till I got complete relief. Keep going.

  • PPS I am on the Modified Release version of this drug. I take it about mid-day so it's well into my system by bedtime.

  • To bvlgari.---My heart goes out to you as I had a similar problem a while back. I was on ropinirole when I had to take more than prescribed because the RLS got intensely bad after hip surgery. My doctor did not listen, wouldn't prescribe anything else, so I e-mailed the doctor at rlshelp.org for help. A very helpful answer came right away! I printed out my question and answer, let my daughter read it, who then took me along to the doctor! Wow, did he listen!!! He became very attentive and put me on mirapex, which has helped me ever since. It is too bad that we have to go to such length to get doctors (some) to listen to us.

    I shall always be very grateful for recieving clear and to the point help from the doctor at rlshelp.com. Sorry, I don't remember his name, although I do have it written down somewhere if you need it. Let me know.------ My own doctor has since thanked me for

    'educating' him on RLS. He really listens now. Said that he had no idea RLS could be so bad. At it's worse, it changed my personality! Good luck to you! I sincerly hope that you get help soon!

  • He is the BEST! I have been dealing with him since 1997, and he is awesome, and I like his web site the best , as to how updated the med info is, and how it is organized. I send people to his treatment page every day. ;)

  • I agree with you Romany...I really don't like the site.....just masses of letters...the treatment page is ok but no more informative than many others I've seen.

  • Well, I am sorry you two do not like that site, but lots of people do like it, and you don;t have to read all the masses of letters of people who have written him since 1997, and he answers every single one. That is a massive job, and I have dealt with Dr. Buchfuhrer, who is also on the medical advisory board for the US RLS Foundation. I find that people who are kind of new to the internet do like the treatment page, which is where I tell everyone to go first, because all the meds are on one page. For SOME, that makes it much easier for people who have trouble doing internet searches, so it is a jumping off point, and he gives other great links to go to, as well. It has every med listed, plus alternative treatments, and he is one of the leading experts. I have been able to depend on him for all these years. AND, I have to say that his list of "Drugs and Foods to Avoid" is the best in my personal opinion, even if one only uses it for a jumping off point.

  • Fair enough. We are all different!

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