2 hrs sleep

[Joolsg]

I never knew how many channels in the UK run teleshopping ads when everyone is asleep. They are all either about 25 minute exercise DVD's or food preparation. At least it takes my mind of these awful leg jerks for a moment. Anyone else been up all night?

[martino]

I am very fortunate as I can get to sleep quite quickly helped by Gabapentin and clonazepam. Many nights I have 10 mins on my exercise bike about 9.30 and this calms my legs. They are painful but not so twitchy. I usually get woken by my legs about 5.00am so I do quite well.

[funnyfennel]

I only sleep for a few hours at a time but try to rest sometime s in the day, You should check this site for all the different meds people take as some of them have found the right combination. Most of us know the hell of sleepless nights, so this is the place to get information and support. I used to be up watching TV but now try to stay upstairs, otherwise I was eating too much. Tell us about the drugs you take etc and somebody will help.

[Joolsg in reply to funnyfennel]

Thanks so much for replying. I have been going through Ropinirole withdrawal and last night was the first time I went to bed without taking any . I have been on tramadol to help but I think my body was screaming in protest at being denied Ropinirole. I know that last night and probably the next week will be the worst ever and I'm hopeful that my body will then adjust and I'll be able to get some sleep and no jerky legs with the Tramadol. I may just accept the lack of sleep and start binge watching a new series on Netflix or Amazon.

[Hidden]

Hi Jools, i have read where people say stopping that last bit of their dopamine med can be when you get the worse symptoms its your dopamine receptors screaming on being denied the dopamine. I hope it will only be a few days for you and it will calm down. Keep with the Tramadol to help.

[Joolsg]

I agree Elisse. The temptation to take just a little half tablet of ropinirole was overwhelming and I kept telling myself that it will probably be hell for a week and then I can start to sleep again. I'm lucky that I don't have to work ( retired on ill health due to MS) and I don't have young children relying on me so I can just be grouchy and miserable in a dark corner. I just want that horrible twitching in my legs to stop. Fingers, toes and everything else crossed that I will be human again in about a week. It's so great to be able to whinge on hear where people understand what RLS is like. x

[beady3 in reply to Joolsg]

I do wish you the best of luck maybe you will let us all know when you have found the magic pill xx

[Hidden in reply to Joolsg]

Yep, this is where you can rant and rave when you feel as if you cant bear it any longer. Some one will always be around to support you and hold you up. x

[Joolsg in reply to Hidden]

Elisse,

I slept 7.5 hrs last night in 6 sessions. I am so happy I feel like dancing down the street. First time in months I've slept more than 4/5 hrs. I took 3 tramadol and Pippins suggested clonazepam to help get through this stage of withdrawal. I had some from GP from a while back ( they didn't work when I was on the dopamine). It worked and I didn't get woken with the legs or back. I'm just hoping this will continue, but even if not, those 7.5 hrs are enough to give me hope/keep me going in getting off the ropinirole. Yesterday was the worst day ever with RLS in overdrive all during the day and me in tears for most of it so I am slightly in disbelief. Thanks so much for the advice to keep going and that it would start to get better. I would definitely have given up if I hadn't had the help of this site and all you wonderful people who know so much more than my GP and MS neurologists on this area. Thanks, thanks,

Jools xx

[Hidden in reply to Joolsg]

Hi Jools, so happy to hear you got some good sleep last night and pippins suggestion of clonazepan helped. Pippins has gone through the withdrawals before, and has come out the other side. So, just keep in mind that you too can do it. I am hoping you have turned a corner and you will see more good nights now. If not, just come on here and rant away, we will support you til you get through it all. x

I noticed you saw a video..? of a American woman who took 30 days to get through her withdrawals. if its the one i am thinking of, then she was under a doctor who didnt believe in any backup med, so she had to go through it cold turkey hence why she was in such a state.

[Joolsg in reply to Hidden]

That's encouraging to know. I couldn't get through this without the tramadol. You'd have to be so physically and mentally strong to do this cold turkey. I'll keep everyone updated. Onwards and upwards as my Mother says. Jools xx

[Linda_pink]

My kids sometimes call me lady macbeth because I wander round the house at night, sometimes my legs or arms are so bad I can't even sit to watch TV

[Joolsg in reply to Linda_pink]

Yup, I'm the same- I've perfected touching my toes to try & stretch out my arms & legs so I can try to sit down. Exhausting, worse than Chinese water torture.

[gypsy49]

like you im up every night very very rare go to bed before 4 or 5am this lately been 6 or 7am every night/morning lol TV's on but don't really watch it as such tried everything going med wise nowt works so far pffttt! most annoying I use to exercise every night thinking it'd work but then after few weeks found I was having to do more otherwise rls acted up worst thought I was in training for the marathon lol , wishing you well hope you find something that'll work and you get some kip x

[Joolsg in reply to gypsy49]

Thanks gypsy. Hoping tonight will be a little better. Otherwise, I can start watching Ray Donovan or Stranger Things on Netflix & see what all the fuss is about. maybe start a new career as a TV reviewer.

Jx

[gypsy49 in reply to Joolsg]

lol yeah could be a tv reviewer on new programs but know our luck they'd be rubbish programs lol my problem is most tv programs I like in the early hours seem to have a lacking of subtitles ggrrr I don't have Netflix because I was told its rubbish for subtitles not sure how true that is , not heard of Ray Donovan I record most things off sky usually series can't sit still long enough for films lol I've still got Grimm and the 100 to watch yet and they're from last year lol, you'll have to look in to a career as a reviewer you never know they might be such a job lol x

[Pippins2 in reply to Joolsg]

Hope tonight is better, that last push on withdrawing from a dopamine agonists med is torture! ! Glad at least you have the Tramadol. Let me know how you go. .Pipps x

[Joolsg in reply to Pippins2]

Thanks Pipps. It's 1.30 am and my eyes won't stay open, I am so sleepy. But the legs and my back think they're on the West End stage doing a very bad version of River Dance. I think I can only stick this out because the kind people on here tell me it can be done. Hope I don't have too many more nights like this. I will let you know if and when the awful jerking calms down. Jools x

[Pippins2 in reply to Joolsg]

Hope tonight is better.What dose of Tramadol are you taking ?

Pipps x

[Joolsg in reply to Pippins2]

GP gave me 50mg to take twice a night but I did take 3 last night- not that it made any difference. Got about 3 hours last night in 3 sessions. Please tell me it gets better. I watched an American podcast where the poor woman took 25 days to get through withdrawal. Not sure I'll be able to handle that.

[Pippins2 in reply to Joolsg]

Just quick for now as have visitors but you can take 2 Tramadol at once that is 2x 50mg in one go.Are you just taking one at a time?.pipps x

[Pippins2 in reply to Pippins2]

Also what dose of Ropinerole are you coming off and how quickly? X

[Joolsg]

yep just one at a time.. X

[Joolsg in reply to Joolsg]

i'll try taking 2 x 50 mg tonight and see how that goes and I'll let you know tomorrow

J xx

[Joolsg]

I was on 2.5mg as of 5 months ago but reduced to 1.5mg over 1.5 months and then I've been slowly reducing to zero as of 2 nights ago. These last 2 nights have been ruthless- body screaming for dopamine but I've come this far so i will see it through. J xx

[Pippins2 in reply to Joolsg]

Joolsg how's it going? X

[Joolsg in reply to Pippins2]

Not good. Taking 2 x 50mg tramadol at same time made no difference. I managed 4 hours in 4 or 5 broken sessions last night. I was in tears a lot today but know I have to let the dopamine withdrawal kick in fully ( some people say it could take 30 days) but am trying to stay positive. My husband has been researching for me and found videos of RLS sufferers who'd had brilliant success with a herb called Kratom and I became all excited until I found out it was made illegal in May under the Legal Highs legislation. Sod's law.

I will take another tramadol, do some more yoga stretching ( and try not to fall over) and massage my legs, watch more Amazon box sets to take my mind off it and just hope I can get at least 30 minutes in one go. It's horrible being woken by leg jerks when you're so exhausted. I seem to be taking longer than most to go through the withdrawal stages and not sure if that's due to my MS. It's good to be able to talk on here to others who have been through it. Take care Pipps,

Jools xx

[Pippins2 in reply to Joolsg]

Aww i am very sorry to hear this ! I managed to cut down by 2 thirds by myself but had to have Morphine to get off completly.It is just awful i really feel for you.Did you have augmention is that why you are coming off? I know this sounds crazy but i used to lay in the bath in hot water with a swim ring around my neck just incase i fell to sleep.At least i coud give my bad back a rest kicking in the water.!!! Get some deep freeze spray but make sure it has menthol in it .Hope you get some sleep bless you ..Sending a hug ..Pipps x

[Joolsg in reply to Pippins2]

Yes I had really bad augmentation. My arms and back and even my face became affected and it happened earlier and earlier in the day. I like the sound of the deep freeze spray with menthol and will send hubby out for that tomorrow. I'm watching some violent new series called Preacher on Amazon and have to say it has helped to distract me- I normally hate violence!

I have noticed that even though the spasms/jerks/crawling are still stopping me from sleeping, they are a lot less intense so that's one positive thing I'll concentrate on.

Thanks so much for the words of support.Really helps,

Jools x

[Pippins2 in reply to Joolsg]

I am up pacing with you tonight Jools!! Also if by Monday things haven't improved maybe ask your GP for an add on med just for a week or so. Something like Clonazepam or a sleeping pill. I withdraw every 4 months from my Neupro patch. I do it to help prevent augmentation .I use a combination of Morphine, Clonazepam and a sleeping pill to get me through it. I am on the break now, have done 2 weeks and this is only my 3rd bad night so not complaining in. Are you in the UK Jools. I have also sent you a private message x

[Pippins2]

Oh and you mention the leg jerks alot Jools but not the urge to move, I assume that you have the urge to move sensations too? X

[Joolsg in reply to Pippins2]

Constant overwhelming urge/need to move. The leg jerks are what wakes me if I've managed to fall asleep at any point. Body objecting to me not moving I suppose. j x

[Joolsg in reply to Joolsg]

Oh, and I am in UK, x