Hello! Newbie looking for advice and connections

Good morning everyone,

I'm a 36 year old woman with a 3 year old daughter and a few years of RLS.

I suffered with excessive daytime tiredness for years before having sleep studies at st Thomas hospital in London and was given a diagnosis of obstructive sleep apnoea. They couldn't believe a slim woman in her 20s had such sever OSA and they were excited about my case study. I had the UVPP operation which was horrific but cured my apnoea immediately. Although I was left with PLMD throughout the night. They gave me Valium at night and melatonin with a stimulant for the day but it didn't really work. Then I got pregnant had my daughter and breast fed for 13 months so abandoned feeling rested and of course didn't take meds. However I seemed to have mild RLS which bothered me. However the RLS has gotten worse and spread to my arms along with spasmy jerky legs. My GP prescribed valium and I self medicated co codmol but my husband suggested I ask to go to a specialist. I saw a Neurologist who gave me ropinirole in July last year and it was like a miracle. I loved the sedative effect too and increased to 1.25mg which was perfect. However the side effects were immediate - a totally blocked nose (so stuffy I couldn't sleep ironically), extreme nausea and - I realise now - compulsive impulse/behaviour. I have gained a stone in weight which is so upsetting for me and £1000 on a credit card.

After speaking to two neurologists finally they agreed that the side effects are not ok for me. So I tried to come off. Oh. My. God. Now I understand why my symptoms were starting earlier in the day. The ropinirole treats my RLS but makes the symptoms earlier and so much worse without it!

Has anyone tried to come off ropinirol/had a similar experience/have any advice or guidance? I have all options available to me now as my GP and neurologist are good. Will other dopamine agonists have the same side effects? Has the ropinirole made my RLS worse for ever?

Thanks for reading,

Sara x

14 Replies

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  • Hi, When taking Ropinerole, Pramipexole or the Neupro Patch, those can after a while make your symptoms start earlier in the day and the RLS gets worse.

    Its called augmentation. Its when the drug starts to work against you. Trying to come off of those meds. is a nightmare, your body has got used to having the dopamine and when you take that away it sends the dopamine receptors nuts like withdrawals. It usually takes a few days it get your RLS back to where is was before using the dopamine meds. even tapering them off can be hard. I know some people have had RLS for 5 days and nights until it settles.

    The other dopamine agonists do state in the leaflet of the side effects which some can get, including the compulsive impulse/behaviour. At least you realised that, and it could have got alot worse.

    Some of the other options to take med wise are...Gapapentin (puts weight on )

    Tramadol, A good website to look at which gives a list of treatments for RLS. is rlshelp.org this is an american based site so some of the medication will not be used in the UK, if thats where you are. But people around the world do go to that site. I look at it quite often, its surprising what info you can get from there... There are also letters from people asking for help on there, lots about coming off the dopamine meds. the doctor who runs the site is a specialist on RLS. Hope some or any of this will help you in someway..

  • HI Sara

    I have never taken Ropinirole, for which I become increasingly pleased, Pramipexole , Gabapentin and strong pain killers do it for me 90% of the time. No terrible side-effects.

    Absolutely no caffeine has been a massive help as well, if I am out all day and drink normal tea i pay for it later!! So no coke, No normal tea (PG Tips left to brew a little longer is the best caffeine free alternative) and the occasional Flat White in Costa and I am happy.

    Sara the important thing is you take control, your GP is NOT the boss, they are limited by their general nature. So read , talk and then ask, then demand from your GP. Or change your GP!!!

    Here for you, as is the whole site :)

    Kindest

    Bob

  • Hi and thanks for your comments. I've managed to reduce to 1mg ropinirole for one week now and I'm pleased so determined to come off entirely. I seem to have a good GP and neurologist who are happy for me to take control. I'm wondering if I will have the same side effects and then trouble with withdrawals from the other dopamine agonists? If so I'd rather not try them at all. I have one child but would like to have another baby and thought as I'm 36 and survived until last year without official treatment I might save the dopamine drugs for later when I absolutely can't cope anymore.

    I have reduced to one cup of tea at 8am and no other caffeine. I intend to try cutting out all wheat and sugar once I am off the ropinirole completely and see how that helps too.

    I wonder if clonazepam will help me to withdraw without you much suffering?

    Feel so happy to have found your site and your help

    Sara x

  • Hi sara, sorry to hear you're having a bad time with the RLS (there's no such thing as a good time!). I took Ropinirole for a couple of years, and yes, I had augmentation too. No compulsive behaviour though, but I also had the stuffy nose, I'm so glad I wasn't the only one. When I came off Ropinirole I literally had two weeks of hell each time I reduced, so a few days and nights is good. I dreaded the next stage of reduction, but it had to be done, as the Ropinirole was causing more problems than it was solving. I am now on Neupro patch 24/7 and it is working great. I have a life now. I dread the day the Neupro starts to lose effectiveness. I depend on it. I hope you get through these problems ok, it's a hard slog.

  • Ps elisse your comment that my RLS will return to original levels once completed withdrawal has helped so much

    And bob your advice about caffeine is so helpful

    Thanks again

    X

  • Hi Sara, the info i gave you is not from my experience personally about the levels returning to normal levels of your RLS before taking the dopamine med. Its what i have read on the website i gave you from the Doctor who specialises in RLS, but what he says i do trust. I should have said this on my previous comment to you. Please let us know if your RLS levels return back. I would be interested to know, and the person who said it took them 5 night and days is genuine...she belongs to another support group i belong to.

    I dont know whether clonazepam will help with withdrawals, i have never used it. I know that it helps with sleep at night for some, it has a long half life, which means it might make you very sleepy the next day. Something you may need to discuss with your doctor. I think from what i have read, that strong pain killers can help with the withdrawals. Or you might just have to ride those withdrawals out.

    Good luck Sara. and someone is nearly always lurking on here whenever you need to vent..

    Irene... :)

  • Elisse,

    You mention of compulsive behaviour. It's not unusual in taking dopamine agonists, it has this particular effect. Mine was buying huge amounts of stuff on eBay, I took out a large loan to specifically finance this.

    Over it now, and when I look back it's quite frightenening.

    Anyway....you will find what works best for you, and which dosage, we all do eventually.

    Sleep well.

  • I know the dopamine agonists do for some have that side effect, i have read of people getting into all sorts of problems because of it.

    I guess i am one of the lucky ones as i have taken Mirapexin and the Neupro Patch and that is one side effect i havent had, thank goodness.

  • a lot of peole get this side effect,i didnt, at least not with ebay, i tend to sell more stuff on there than i buy :) but for me it was the eating, almost had to padlock the fridge, :( but ive got it under control now thank goodness

  • Hi Sara,

    Sorry you are suffering so badly. I take 4mg of Clonazapam at night just before I go to be, it's something ive been taking for years. It keeps my RLS at bay perfectly and knocks me out at night. Unfortunatly it is highly addictive which I did'nt realise until I let my perscription run out. I ran out on the thurs night , by Friday night I felt really aggitated, all day Sat so on edg, Sat night I managed 2 hours sleep, Sunday climbing the walls, Sunday night another 2 hours sleep. Went back to the docs on the Monday to get my perscription and the doc told me I should never stop taking them like that. Im back on them now and everything back under control but im very worried that im so addicted to them. The trouble is ive tried other drugs and nothing helps my RLS. Hope this is of some help to you and lots of luck

    Trish x

  • Hi all, just wanted to introduce myself, my name is Nev I live in the UK and have had RLS for about three years or so.

    I have been taking Ropinirole, and now as a result of augmentation am currently taking upto 6mg per day, which as am sure you'll be aware is more than the max dosage for RLS, even though its 24mg for Parkinsons!!

    I am currently taking to me GP about changing my medication to either Pramipexole or Rotigantine. I'm fed up of the side effect's, especially fatigue, but I'm frightened of changing meds as the Ropinerole does work (well most of the time).

    I read the comments above with interest, and take my hat off to those trying to get off med's altogether, not something that appeals to me!! But good luck to you, I wish you much success.

    I'm aware of the caffeine influence, and the comments have made me think that I should have a trial period without tea & coffee (which I have always loved to drink) to see whether it has any positive effect.

    Anyway, enough rambling, good to meet you all, be good to have others who understand the nuisance of RLS to speak to.

    Speak soon

    Nev

  • Hi all, another newbie ....to this site not to RLS. I have suffered from this since childhood and unlike most i have read about on here my problems are not at night but during the day. Its not confined to my legs either but is also in my arms. Its a family thing with our lot and to be honest so far i have suffered worse than my father before me or my older sister and brothers. I am now 64 and am on 24mg a day Ropinirole. Yep the max. I would love to be able to come off of these as i have noticed so many diff problems but up till now these are the only things to work for me. The idea of changing them was never an option however reading some of these stories i am not as sure about that anymore. I would love to hear from those of you who have managed to come off this med and have managed to find an alternative that works. I had to research RLS for years before my doc took me seriously and in fact the consultant i ended up seeing about it actually learned something from me lol he didnt know for def that it could run in families like mine does, but i always say theres more to learn and would love to find a way of doing without these tablets if its at all possible. My younger daughter would love to as well because these tablets make her physically sick. I have noticed that during the winter months when its really damp the Ropinirole doesnt seem to work as well and trying top stop smoking was horrendous using the substitutes as the also affected the Ropinrole. Glad to say i have now chucked the weed at a time of ill health which turned out to be a good thing for once. Anyway its lovely to be among others who understand what i am talking about and i look forward to chatting with some of you and maybe getting some better ideas of how to go forward on this or even help someone new to the dreaded RLS lol Thanks for reading all. Joyce x

  • Hi Sara,

    I've just joined this site. I've had restless legs since I was a child and couldn't believe that I'd found meds for it a couple of years ago. I have been on mirapexin 0.088mg, the lowest dose, for nearly 3 years. The Dr tried to increase it when I got augmentation but I knew I didn't want to go there. I have finally decided to come off all the meds and try and go back to managing it as I used to. I hate pumping myself with tablets that ultimately don't work in the long run. I stopped taking them on Friday with my GP's support and now its Monday and I've had next to no sleep. I'm not drinking caffeine, sugar etc, My limbs ache and I get the involuntary jerking of the leg when I lie down.

    Sarah, have you gone back to your previous RLS levels and how long did the withdrawal take as I am really struggling.

    Thanks

  • What a horror story. in America--nobody wants Ropinirole due to the side effects. I wish I did know if it made your

    disease worse. Maybe they will work out of your system if you weren't on it too long. a lot of my depression medicine I have had did that--and they worked out after awhile. Tremors was a nasty one. but gone now. I do

    hope this works out for you. I am on Mirapex. It is for parkinsons disease, stops the tremors, and it certainly works for me. Now on my third year with it. Good luck and keep in touch. zelda

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