Finally

Hi all ,my Dr has run out of all meds they are allowed to try ,so she is booking me into a sleep clinic ,BUT doesn't know wheather i will get in as there is a huge waiting list , in the meantime just bare with it , I tried maripor and that lasted 3 days ,so back on pramapexel for moment will just have to put up with side affects ,at least I can get some sleep on this med ,but scared of orgmentation

36 Replies

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  • What are you hoping to gain from the sleep clinic?

    Unfortunately RLS isn't something that you can stamp out it appears to need full time treatment I've polled people here and few are managing without drugs.

    I can't see what the sleep clinic can do! In saying that, I hope you get some benefit.

    Have you looked into kratom or cannabis? If you check the search engine you'll find loads of info about them.

    Also if possible meditation can help reduce the associated cr@p that comes with it.

  • Hi raffs can't get kratom here ,they have something similar on line but a lot mor mild ,so am just starting with cannabis made biscuits but didn't help at all , made choc and that made me ill , vomiting ect ,,tried in cup of tea nice but didn't help ? , don't want to smoke ,as for meds over here in NZ they have run out of all they can prescribe without putting in for sleep clinic , IF THAT EVER HAPPENS so will try anything in the meantime

  • There tends to be the opinion that high CBD plants are best however I found high THC ones better. It can be quite strain specific as far as I can ascertain. Some advice from a site you may be familiar with:

    healthunlocked.com/rlsuk/po...

    I would also take very little eaten as the potency shoots up and can be overpowering. I wouldn't be a fan of smoking - as an ex-smoker smoke and lungs don't mix, however, smoking means you only take a little at a time til symptoms are taken care of. You use less and can function better.

    It's a pity the Kratom can't be got - safest treatment that I can research and most effective in my experience.

    I really hope you get some satisfaction at the clinic. What drugs have you tried?

  • Started out on sinimet about 20 yrs ago they only worked for few weeks ,codeine , clonazapam which I was on for about 12 yrs they worked really well just went up and down from one tab to four until they stopped working ,gabapentin migraine on them feel sick and not with it ,same with Ropinerole,then codeine again see if they might work ,no then maropar ,four days that lasted ,so will stay on the best of a bad bunch ,which is pramapexel with half clonazapam,my old bod doesn't seem to like Dopamine meds

  • Have you tried Tramadol or Targinact both can be very effective for RLS also I've found the Neupro patch OK with less side-effects.

  • Not allowed to prescribe Tramadol now ( new law ) only hospital med ,I asked to try Tramadol as my hubby was on it a year or two ago different prob ,and I see quite a few on here take it, but Dr said they aren't allowed to prescribe it now as they are more harm than good and Targinact and patches apparently not on the list ,

  • Oh my word, what list is your doctor talking about..!! ? I have not heard of any new law on doctor's being not allowed to prescribe Tramadol.. Or the patch. Targinact seems to be a problem getting doctor's to prescribe too.

  • This is in NZ and that's what I was told ,Dr was going off computer on meds I could have and I've outdone all I'm allowed

  • Ah, i forgot you were in NZ... Thats too bad. :(

  • That's a shame, I wonder how wedded your politicians are to big pharma!

    I know GPs here can be very reluctant to prescribe the harder hitting drugs but they can be got.

    After I had stopped the Tramadol my GP had prescribed, (stopped myself cold turkey) he wouldn't prescribe anything stronger than co-codamol ,(8/500), until I was seen by the pain clinic. The pain clinic gave me strong drugs and said they wouldn't work which they didn't but after that my GP was happy to prescribe the Targinact.

    Maybe my GP is better than I had thought.

    I took a quick look on line but being unfamiliar with NZ I can't seem to find any decent information. I wonder is there a health advisory council like NICE in the UK? They might be able to offer advice that your GP doesn't know, (there was a woman her whose UK GP didn't know the NICE guidelines on RLS and she has to explain it to him!!! Maybe if you were able to source the info for your Dr you might get better treatment?

    Good luck and take care.

  • Will have a look ,but doubt it ,RLS must still be Behind the times here ,I don't even know anyone to discuss things with only one person that lives miles away

  • RLS is well behind the times world wide - a Dr once told me that it was because there was no money to be made in it!! Speaks volumes that!

    I thought we lagged behind the world particularly when our US brothers and sisters post but you seem to be worse off.

    The only person around me that even remotely understands is my good lady wife and that is because she witnesses the hell I live in! You will find plenty to talk with on here. You can PM people too for a private chat not plastered over the internet so that can be invaluable too.

    Take care.

  • I dont think Canada is very well up on RLS either, from what i see and read. Other countries too. So, altho we moan about the UK, we are "lucky" in some ways. Even the USA have doctor's who STILL dont believe RLS. They are worse off in some places in the USA as doctor's are stopping them having any opiates, when thats what they use and works well for their RLS.

    I am on a few FB RLS support groups and i see people in a panic over their doctors not prescribing opiates.

  • Hi Elisse ,nice to know there are other Countries like NZ

  • Hi

    My neurologist is unsure that I have RLS. He cites my age of onset -67-, no family history, and the considerable pain I suffer despite 1800 mg of Gabapentin and 200 mg of Tramulief. Last night about 8.00 pm I had a long chat with a member of his team and she suggests adding 1mgof Rotigotine to the cocktail. He requested a sleep study in August last year and we are still waiting. He wants to see if I have PLMD. I wish you better luck than me. By the way I tick all the IRLSG criteria and according to that the RLS is either severe or very severe.

  • Hi Martino ,PLMD seems to go hand in hand for a lot of us with RLS to be honest if I just had that I'd be quite happy as I don't know anything about moving and twitching when asleep ,as for the sleep clinic I think I'll end up waiting at least that long

  • I hate the RLS as I can't even go to bed and my wife hates the PLMD as she has to leave the bed!

  • We have a king size bed ,I don't know if that helps ,hubby sleeps way over on the edge of his side ,but luckily he's a sound sleeper ,only the odd night he has to get up when I have bad PLMD

  • King size bed too but from all accounts I am a bit like a bucking bronco at night, (and not in the wild stallion sort of way :) )

  • Ha Ha ,bet misus is pleased about that

  • Very pleased indeed - she's even kicked me back a few times or so she says :)

  • Good when you have

    a deep sleep like that

  • We resorted to zip and link beds. That way I can move around as much as I need to and my wife doesn't notice even the times, like today, when I was up early

  • Don't know about some of you , but morning is the time I want to sleep so very groggy it's hard to wake up

  • That used to be my problem I'd fall asleep at 6 or so only to have to rise by 7 sometimes it was easier to stay awake.

    I can no longer work so if I am bad in the morning I can lie on, (if my body allows).

  • I don't get any twitch in the morning just a horrible tickle that makes me shiver ,but I now get to stay in bed to ,but the day goes to quick especially when it's nice ,it's beautiful here at the moment it's late spring and everything is so green and fresh

  • Hi Mopsy1950.

    A somewhat confusing post. Where you said "that lasted 3 days". Does that mean one dose for 3 days? Have you been taking Pramipexole for quite a long time? Augmentation usually a problem if the drug in question has been used for ages.

    And what is your Dr. doing allowing you to stop Pramipexole suddenly? I am being weaned off that drug but I am scheduled to take 6 months doing so. To stop this drug suddenly may lead to NMS (Neuroleptic Malignant Syndrome). This is rare but may be lethal and so deserves some consideration. May be worthwhile googling NMS or reading the patient information that comes with every box / bottle of tablets to get some background information

    .

    I wonder what a sleep clinic is going to do for you. Also I wonder what is on your Dr's list of permitted drugs? Anyway, what is your medical problem? Drugs like these usually given to those with Parkinson's Disease? Or Pramipexole in particular is very good at keeping RLS twinges at bay.

    Looking a little wider I see the chatroom in use is mainly concerned with RLS

    Good luck.

    Pete

  • Hi Pete ,sorry ,no that is the med I'm on ,pramapexel,and half clonazapam,but I have side affects ,as there's nothing else she can try without going to a sleep clinic that's it ,but I have migraine and other affects ,just tried codeine 60mg but no good first night was up most of night so back on pramapexel at least I get some sleep

  • I have RLS

  • someone suggests using cannabis. Is this available. I thought it was against the law?

  • Depends what country you are in.

    Remember it may be illegal but that does not mean use is immoral.

  • Like your thinking

  • thank you for your reply. I am in England but was curious. And of course if it is illegal you have to find a way to get it.

    I am sure if I had something wrong and doctors would or could not do anything about it I am sure I would use anything I could find if it helped the problem. Legal or not.

  • Hi it isn't legal here either but were theres a will theres a way

  • Hi Jonjo what country are you in?

  • I am in England. thank you for your reply

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