RLS

[Mum27]

Went to my doctor 3 weeks ago i was on pramipexole told him i had some days when they did,nt work bad nights bad days so he put in on Ropinirole i was worse than ever 2 hours sleep so i took co-codamol they did,nt work. My doctor was on holiday so had to see another he gave me stronger co-codamol + sleeping tablets but i was still exhausted even though they made me sleep. I feel so tired all day i am crying with exhaustion so don,t take sleeping tabs. When i looked on rls website it said Ropinirole took

4/10 days to work and only as half life 6 hrs. So my doctor left me with no meds to help me at all. He obviously don,t no how rls meds work so how can they treat you for something they no nothing about. I am going back tue armed with imformation i printed off the website i now no more than my doctor im not sure he will like it. I ask him if he new about augmentation he never ansered me. I am going to instist on seeing a nurolagist one that understands rls this has gone on long enough i have had this for 40 years

[beady3]

Hi Carol well done for your assertiveness  with seeing your doc,when I asked my doc about augmentation  he said. We are getting a bit scientific aren't we ,you would. Think they would look things  up  instead of just dishing meds out,I do know what you are going through I have the tabs you have had  but now on Tramodol things going ok,I have had rls 36 yrs and it doesn't get any better ,keep going Carol you will get relief soon if you stick up for yourself. Good luck x

[Tease-ah]

I had the same, I was on Pramipexole certain nights it wouldn't help. Doc changed my meds to Ropinirole and oh my...worse then ever. I changed GP, went back to Pramipexole (lower dose) + Tramadol, not had 1 bad night since! Hope you find the right meds that work for you Carol.

[funnyfennel in reply to Tease-ah]

I am interested that you take pramipexole and Tramadol together. What doses do you take and can you sleep?? I take Targinact (oxycodone)  and x2 prami, ,but do not sleep much, am wondering whether to try a different combination. 

[Tease-ah in reply to funnyfennel]

I used to be on 6x 0,088mg Pramipexole, which gave me RLS during daytime and 5 to 8 days a month at night(augmentation). Since i swapped GP I first tried Ropinirole (made me sick). I am now on 50mg Tramadol (3 hours before bedtime) and 5x 0,088mg Pramipexole (2 hours before bedtime). The first 3 weeks the Tramadol made me a bit dizzy in mornings (is why i take it 3 hours before bedtime). Might also be because I am still on a way too high dose of pramipexole. The idea is that i will build them off to 3x 0,088mg/day. I sleep like a baby since being on this combo. Can you not sleep because of the RLS or because of the meds? If you still experience RLS than i would recommend to try other medication. Tessa.

[funnyfennel in reply to Tease-ah]

Thank you Tease ah, but my Rls is mostly under control with x2 pramipexole and the oxycodone so for that I am grateful, but I still get only 2-3 hours sleep at a time and then sometimes , like last night, just the odd hour. I did have a time when I took x4 Ropinerole and my life was awful, tired and lethargic all the time and had no life. partly because of this forum, I managed to reduce my dosage and am at least more active than before.

[Tease-ah in reply to funnyfennel]

You think it's the meds causing the sleep problem? There is this medication called Mirtazapine which is an antidepressant but nowadays commonly used by doctors to treat sleep disorders... might be worth mentioning it when you see your GP. 

[mysterylady60 in reply to Tease-ah]

Can I ask if you work or are driving regularly, I'm 61 and working part time as a carer, so I'm up at 6am to get to my 1st job at 7am...so tramadol concerns me for that reason, ? X

[Tease-ah in reply to mysterylady60]

I take the tramadol at 18hr30 in evening, I was feeling a bit dizzy till around 10hr00 in morning but that went away after 3 weeks. So if you are planning on trying the Tramadol be careful. But if I remember correct I had the dizziness with Pramipexole too, also went away after few weeks.

[John_naylor]

My GP told me to stop Gabapentin and  start Ropinorole. I was in a terrible state for 2 weeks! When changing medication I learnt to run one down slowly and build the other up slowly using a painkiller during the transition. Tried Tramadol for the transition between dopamine agonists and now use nothing else. 

I think there is a lack of advice when prescribed drugs. The leaflets with drugs I find useless as the print is too small, there is far too much info and the important bits aren't obvious. GP's tend to hand over a prescription and don't discuss dose. Since RLS I have learnt to ramp up/ down, carefully observe side effects, see what dose I really need, test the time of day to take the drug and if it needs splitting eg 1 at 6pm and 1 at 10pm. There is an enormous amount to learn and loads of variations to getting it right but what satisfaction when it does work for you!

[Mum27]

Thank you for your support i gone through hell for 3 weeks never again. I feel like screaming at my doctor when i see him tomorrow Carol xx

[Retren]

Retren I found when I was on opiates I did not require a great deal of sleep but my goodness the RLS was taken care of.Unfortunately I am not allowed them anymore because of cardiac problems and it is a case of trying what is available and different combinations as well.The side effects are not to be believed with some medications.One presses on.It is not enough to battle with all of this but to have to deal with the medical world.I am very fortunate to have a neurologist whose speciality is RLS he takes time and listens.I am still not used to not being able to have my spouse give me advice or my brother.I got so used over the years to just listening to their views.

[jimmycat2]

Hi Carol  I quite agree, how can they treat something when they don't know what the cause is.  I have been down the medication trail with the doctor, starting with pramipraxole then on to roprinorole both of which worked initially but became less effective over a period of time.  I have also seen a Neurologist, who was very dismissive of the condition, in actual fact suggesting that it was not RLS at all as it aaffects my arms and I have   attacks during the day is not "symptomatic"of RLS.  He prescribed pregabalin from which I suffered terrible side affects and recommended if that were the case  to change to gabapentin which I did.  Unfortunately, gabapentin was even worse and my life became even more miserable, I was unable to sleep, was completely disorientated and found myself walking into walls, missing the chair when attempting to sit down and when trying to climb in to bed found myself on several occasions, on the ground completely the wrong way around from the bed.  My social life became non existent as I would fall asleep in the middle of  conversations, at the table when dining out and the idea  of going to the theatre or cinema was a complete no no.  

After the last episode when taking gabapentin I decided to take myself of of the medication prescribed by the so called experts and go down the alternative medication route.  At the moment I am taking magnesium, Vitamin B6 and B12 and this seems to have improved the condition slightly.  I have also been wearing  Halycon Copper Bracelets for a considerable amount of time which also helped initially  but just lately I feel that they are not quite so effective as they were.  I have now purchased a magnetic lag strap from a company called Magnapulse  which is very effective (at the moment) but how long this lasts is in the lap of the gods. Although I am getting some relief from the alternative methods I am still only getting about two hours sleep per night and find because of this I do not function  well during the day.  I wish you luck with the Neurologist and sincerely hope you get a better result that I did.  I am due to go back to the doctor for a review fairly soon but feel very reluctant to do so as I have now formed the opinion  that there is very little  point as they do not seem to be able to help me and this condition is something I just have to learn to live with.  

[Mum27 in reply to jimmycat2]

Cauld,nt get an appointment yesterday with my own doctor who has been dealing with my rls . Tryed to get appointment today still no luck. Had to see another doctor as i had no Ropinirole left. I am on 2x0.25mg ask her if i cauld take more staggered through the day she said she did,nt no anything about that drug but she did give me a stronger dose went to 3 chemists cauld,nt get them so got nothing for tonight ill have to take co-codamol. i also ask her to refer me to a neurologist she more or less said no we can deel with any tests. I think i will ask my own doctor when i see him. I even told her that i considered a box of paracetamol  to make the pain go away she did,nt take any notice, my friend said you were crying out for help and she ignored you what sort of doctor dose that. Ropinirole takes 4/ 10 days to work  so because the chemist can,t get it till tomorrow dose that mean another 4/10 days to work. message for Retren were did you find this nice neurologist

[Retren]

Carol 1948I live on Long Island New York U S A I would be happy to give you his name if you wish.13 April 2016as you say chemist I assume you live in England.

[Mum27]

Thank you Retren yes i am in the uk so won,t be possible i will have to ask my gp to find a good neuroloģist that has a insight in RLS carol1948

[KAYEx22parker]

Hi, I.ve read most of the chats here discussing Pramipexole for RLS. I'd like to share my experience & knowledge as I've had RLS for fourteen years, about ten years on Dopamine drugs. In the past six months after having less & less relief with Pramipexole I joined a Facebook group called RLS SUCKS. Most of my supporters on that group live in America and some are fortunate enough to have access to the RLS Clinical Care at John Hopkins Medical Centre. There's Dr Christopher Earley who is an RLS researcher & medical practitioner there. I suddenly found out about Augmentation and how disrupting Dopamine Agonist drugs were to people with RLS because the dopamine drugs become a much bigger problem after taking them for a long time (augmentation). I then shared all this research from Dr Earley to my GP and I had already decided I wanted Pramipexole out of my life so I began my withdrawal. Over five weeks I suffered horrifically with no RLS medication at all. I was basically walking all day & I would walk around the block with my torch at 2 am just to get relief so I could take a deep breathe. It was the worst & hardest thing I've ever had to do in my 64 years. Now I am coming back to planet earth with my start of Gabapentin and alternating between Clamazopan & Tramadol. I'm not there yet but I do get a sleep more nights than not. I have started writing a book called Restless Leg Syndrome and Me because I think its time people like me who suffer from RLS share all the different aspects of what it is from the perspective of a sufferer rather than a medical person. If anyone would like to contribute their story for my book please let me know. my email address is [e-mail]. I hope my experience may bring light to some. Kaye

[Hidden]

There is one way to detox from any dopamine med by stopping all meds and going though hell. Then there is a better way, to take a strong pain med to help with withdrawals. Most people take the pain med and get through the withdrawals in a easier way more humane way. I would recommend anyone who needs to detox from a dopamine med to take the pain med.

[Mum27]

Elisse. I am not sure i am strong enough to go through all that pain again although the last time i changed meds from one to another i never had a strong pain relief, having said that the other day i had a flare up with RLS for 2 days and not even the strong pain relief helped