Desperate for some quality sleep

I have been a RLS sufferer for 60 plus years. It started as an occasional nuisance and over the years it has got progressively worse until it has become a regular nightly visitor. Over the years I have tried many medications, my present meds. (Not including the ones I take for other health issues) are. 5pm, 1x 0.18mg Pramipexole Tab. 1x 50mg  Tramadol capsule. At around 9.30pm 2x 0.18mg Pramipexole Tabs. And 2x 50mg Tramadol capsules. Initially this combination was the answer to my prayers but after some weeks my RLS re appeared.

I am due to see my GP on Wednesday and I would like to ask the forum a question.

Is there a top 10 list of medications as used by other RLS sufferers?. It would be a great help if I could go to my GP armed with this as usually although a sympathetic good doctor he says there is nothing more he can due for me.

Thank you in anticipation.

24 Replies

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  • Could you be augmenting on Pramipexole, ie the dopamine agonist now making the symptoms worse? I would try reducing and stopping pramipexole and you may find the Tramadol on its own does the trick. Are you on any other meds which are making RLS worse, eg any anti depressant? There is a way ....

  • I believe the best RLS drug is Pramipexole, also called Sifrol or Mirapex or Mirapexin or Oprymea and there might be more

    The only problem with Pramipexole is when you want to stop using it. Very unpleasant withdrawal symptoms. You need  lots of time to slowly wean yourself off this drug. And by slowly I mean many months rather than a few weeks.

  • Long time no see Pete! !!

  • Hello Pippins2,

    Hope all is well with you.

    Yes, I've not been very active on the forum for some months. I seem to be progressing and find myself feeling anxiety that I am unable to satisfactorily describe but leaves me feeling all of a tremble. I find typing rather more awkward, more unpleasant and frustrating as I have to make so many more corectons than I used to. Another mostly new thing is a tendency to fall over. The consequences of which are sometimes tolerable and sometimes less so and of course may become so much worse. This makes getting about a fearful business, occupying much of ones concentration. Crowds are impossible. Need a wheelchair.

    TTFN

    Pete-1

  • Pete, I am sorry to hear that your condition has deteriated and you are having these problems. I know there is no cure for Parkinson Desease and if I recall correctly that is what you suffer from alongside the RLS?  x

  • Mirapex is not now considered as first line for rls since it inevitably leads to augmentation  and then you have to go through the whole withdrawal process.  Tramadol is now fairly standard - but has some nasty  side effects . Opiates (oxycontin ) should be the long term  way to go - but society is so hung up on addiction issues that it is difficult to get prescribed.    Horizant is another potential route to check out..

    As for sleep - get some short half life  sleeping pills at as low a dose as possible - take for just two nights. Also try magnesium before bedtime. And follow sleep hygiene . 

    Good luck.

  • But why does anyone want to wean off a good drug?

    What is the alternative?

    More sleepless nights?

  • If you havent experienced augmentation from taking dopamine med then you will not know why people need to wean off it. There are other med options to take.

  • Poor you, so many years, I thought it was bad enough for me, 37 years from the age of 13!  Hope you get some help online x

  • For my money I think the following are all good, (although not available from the Dr):

    Kratom- Available online although illegal in some states and now with the f**king stupid law in the UK it will become hard to get from May. It works on the opioid receptors is quite mild and for my money best drug to take care of RLS hands down no competition.

    Codeine - Good opioid drug works well with little side-effects

    Cannabis- very strain specific and the legality can cause problems but not a bad drug for RLS and the insomnia and lowered mood that can come with RLS

    Targinact - Oxycodone with naloxone, (to stop you injecting it or 'plugging' it), newly licensed in the UK for RLS and quite reasonable as all opioids I've found.

    Neupro Patch - I've used a couple of Dopamine agonists and found the side-effects terrible - with the Neupro I've had no side effects and its reasonably effective.

    Tramadol - I used it for several years and found it very good. It can also lift the mood a bit and after several decades of pacing the floor who couldn't do with a lift?

    DRUGS NOT SO GOOD, (in my experience):

    Gabapentin - Put on a heap of weight and was drowsy with RLS

    Mirapexin - The side-effects still haunt me!!

    Amitriptyline - Made everything worse.

    But as with every drug people react differently and what works for one may not work for another. Some good info here:

    rlshelp.org

    Check the treatment link on the left hand side and good luck - let  us know how you get on.

  • Hi John, thank you for your helpful response. Unfortunately your post seems to be incomplete.! Your last sentence says "There is a way" that's all?

    My other meds. are , Doxazosin, Gliclazide, Lansoprazole, Losartan, Simvastatin, Warfarin plus I am on a clinical trial for gout and take medication that I receive from Dundee University called Febuxostat. I assume that Febuxostat covers the name for all the different formulations that they send.

    Please tell me how withdrawals from Pramepexole manafests itself.

    Look forward to your reply.

    Thank you

  • Sorry, I meant to give hope! I am sure with the expertise on these forums (fora?) that you will find relief. There will be a way! All dopamine agonists (Ropinorole Pramipexole Neupro patches) failed for me after a few months and I had augmentation. Withdrawal from each was awful: RLS worse, migraines, dizziness, sight and smell affected for a couple of weeks. I used Tramadol to aid withdrawal and now use only Tramadol, it has been my saviour. Try looking for RLS triggers (spicy food, alcohol etc. - boiled potatoes is one for me!) by making a diary. Try reading RLS by Buchfuhrer, Hening etc and use the forums. Good luck!

  • Hi John like you say food do make a difference ,my worst is sweet stuff  we went to a part last night though the only thing I had was cheesecake I had a rough night 

  • It was the rising agent in the base- dynamite for me.

  • Greeacre has your increase in symptoms coincided with starting on this new trial drug? You presumably don't know just what is in that?  Was just a thought. ..Pipps x

  • Hi Greenacre I deeply emphasis with your desperation for sleep. While I only occassionally suffer from RSL i have every night a crawling sensation inside my legs and they itch so much i break the skin. I have tried every cream and lotion. Dr prescribed antihistamine but they do not touch it. 

    I sincerely hope you find something to relieve it soon. Lack of sleep drives you mad.

  • Hi Greeacre  sorry you are struggling again! ! How's the knee after your knee replacement?  As for meds there are basically 3 types used to treat RLS, the Dopamine Agonists which are most commonly Mirapex ( Pramipexole ) Requip ( Ropinerole ) and the Neupro patch then the anticonvulsants most commonly Gabapentin and Pregablin ( Lyrica ), then the painkillers most commonly Codeine and Tramadol. Then there are meds that just help you to sleep such as Ziplicone and Trazadone but if RLS is severe you are unlikely to sleep through it . Some find Clonazepam very helpful in combination with one of the other meds. Don't forget when you see your GP to get your Ferrartin iron levels tested. Some people are saying that they are getting some improvements from taking magnesium supplementsand using magnesium oil on their legs  others from taking iron as soon as symptoms start up.I must be honest though and say neither magnesium nor iron helped me but worth a shot You have asked about withdrawals when stopping your Pramipexole, well unfortunately if you stop a dopamine med abruptly RLS is likely to become very severe so it needs to be done gradually and most need to increase their pain meds to get through it,I am not sure what you have tried but the anticonvulsant might be worth a go as they seem to work either amazingly well or not at all. Have you tried the Neupro patch?  Anyway let us know what GP gives you good luck! ...Pipps x

  • I have tried everything from meds to surgery, nothing helps. I found the Relaxis pad I take Temazapam at bed time for a sleep disorder , now I have the Relaxis pad too, and can fall asleep in a few minutes and stay asleep all night.

     If you do a search for pad be sure you get the Relaxis manufacturer info as there is a knockout site out there

  • Unfortunately Relaxis pad is not yet available in the UK  x

  • Hi Greenacre, if your doctor is needing some advice you could suggest he looks at the section for professionals at rls-uk.org as it may give him some extra information.

  • To all my fellow sufferers, thank you so much for your helpful and informative replies to my post. I find it encouraging that it is possible to obtain so much quality information on this forum. After my visit to the GP I will be happy to share his recommendations.

  • If i am dilligent and do this religiously I get some RLS free periods.

    1 2mg ropinirole time releaseed at 10Am..1 3mg ropinirole at 2PM, another at 6 PM and another at 9 PM and with the 9PM I take 6 300mg gabapentin and a 5/300 vcodin.

    I then sleep about 3 hours and awaken and from then on it is short knaps until daylight.

  • Well I have seen my GP, explained my current situation, presented all your comments and ask him to consider looking at the RLS Professionals site. In a diplomatic way he made it plain that he was no interested and went on to talk at length about RLS. He did not agree that I should come off Pramipexole And gave me an additional medication (Gabapentin) he also wants a blood sample to check my vitamin D. I see him again in 6 weeks and depending how I am he will refer me to a Neurologist. Don't get me wrong, I do have a great deal of respect for this doctor.

    I will catch up again in 6 weeks time.

  • Change your Doctor!

    There is always more they can do to help you!

    Be a squeaky wheel till you get help.

    I have had RLS for decades.

    I now take sinemet 100/25 1 at 4.30 pm, with Pramipexole 0.25, and at bedtime I take the same sinemet and 3 tablets of the pramipexole with fantastic results.

    The sinemet is a very old tried and true drug and enhances the effect of the pramipexole.

    I have no augmentation.

    It is very important to watch your diet with RLS.

    No processed foods and no sugar, only fresh fruits and vegetables, no alcohol or coffee after about noon.This diet makes a huge difference, also no aspartane , soft drinks, , and watch for drugs that make the RLS worse.

    Look online and you will find the list.

    The American group the RLS Foundation is wonderful and if you join , money well spent, they will send you a package about drug treatments and which drugs exacerbate the symptoms.

    You can show it to your Quack lol.

    If I am travelling, bus plane , train etc or have a dentist appmt, I take a Sinemet and a pramipexole about 30 minutes before i leave, and repeat as needed

    I fly often from Canada to Australia and take extra as I need it and do really well-- simply not possible without the drugs.-- such a hideously long flight.

    I am 80 and do not care what effect the drugs eventually have on me.

    Life simply cannot be lived without them. I had so many years before with no help and since we live in the 21 century we may as well take advantage of science and what it can do for us!!

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