desperate for some sleep: went to see a... - Restless Legs Syn...

Restless Legs Syndrome

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desperate for some sleep

13 Replies

went to see a nero surgeon perscribe me with a slow release cinemet but kept me a wake all night so went back on repinarole had to start of on a low does which is 0.25mg at night having to increase it gradually taking 2 but still not sleeping think im going into a depression because RLS is driving me silly + not sleeping need HELP

13 Replies
thedragon profile image
thedragon

Cally...sorry you are feeling so rotton. I'm sure we all do from time to time and I hope you get some support on here. I can't help with the meds as I only use codamol. It works for me most of the time. I had a bad weekend too. The rls settled in the bottom of my spine and its been horrible. I take anti depressants..not telling you too but talk with your doc. It's a very depressing disease. Take care honey x

Spanner profile image
Spanner

You could try some clonazapam, i use it to combat insomnia and i only need to take a very small dose. Good luck.

jefro profile image
jefro

Hi Cally... changing meds can be alarming but I have found the best way is NOT to stop the meds you are on untill the new meds take affect. I have been on Ropinirole for some time but I found that my RLS was returning at different times during the day so my GP put me on slow release Cinemet. I kept taking Ropinirole and found that the RLS was so much better during the day so I then started reducing the Ropinirole. I now take Cinemet twice a day and 1mg Ropinirole at 6:30pm after my evening meal, 1mg at 10:00pm and If I am having a realy bad day 0.5mg as required. Before Cinemet I was on 4mg Ropinirole in the evening and having realy bad RLS during the day, now I feel almost normal with very little breakthrough of RLS. My GP said experiment with the meds untill you find whats best for you and I think that was good advice. I hope this helps and best wishes.

in reply to jefro

hi jefro you replied to my question thanks for that. got some sinemt 125 left just wondering could i take these instead of the slow realease. The strengths are 25/100mg dont understand this my GP will not perscribe me any slow release cinemet because it kept me awake all night (only took this at night to get me through but didnt work)so put me back on repinarole low dose builing it up to whatever so just wondered if i could mix my repinarole with the sinemet125 depending on the strength

jefro profile image
jefro in reply to

Hi Cally... the Sinemet you are taking is half the strength that I am taking so if it is affecting you by keeping you awake I would not take it. But, if you are staying awake because you gave up the Ropinirole then I would try the Sinemet with Ropinirole, the two drugs work well together. You could also try taking Ropinirole at lower doses but spread them over several hours, for instance if you normally go to bed at 11 o'clock then take 0.5/1mg at say 5:00pm and then again at 8:00pm. Again trial and error will eventually find the right times and doses that suit you so don't give up and keep pestering your GP if you feel the drugs are not working as there are plenty more you can try.

hi jefo didnt no you could mix repinarole with anything else my GP gave me some cinemet 125 they were great for a couple of hrs then when i took the slow release (brown one) at 10.0clock went to sleep for an hour then that was it woke up couldnt get back to sleep if you can mix & match that would be great but my GP (shes not up to scratch with RLS)says its not wise to mix with meds,tried takeing cinemet 125 with the slow release cinemet but still kept me awake with RL is it possible for you to send me an email with the above advice so i can show my GP thanks

nightdancer profile image
nightdancer

Just as an FYI (for your information) in general, man, many people with RLS find that a combination of meds works way better than just one med. LIke I said, that is in general, and we all have to do trial and error when it comes to our meds. What works for one person does not necessarily work for the next one. RLS drugs, for an example, lots of people can take ropinerole and/or Sinemet and it works fine for them. many others have to go to other classes of meds for relief. drugs.com and rxlist.com are great sites to look up drug interactions, and of course, the info you get with your RX at the drug store has good information. We also sometimes find that the pharmacists know more about meds, and are glad to answer questions for you. We can never ask too many questions when it come to our health and RLS, since there are so many people AND doctors that do not "get" RLS, and how it can affect our other body systems. ;)

thanks nightdancer for your reply going to try taking my sinemet & repinarole to see wether i get any relief & sleep cant carry on like this not sleeping & RL its just not possible to carry on without any sleep

Cally21

My doctor told me that people with RLS reach a point without sleep

that they either shut down completely or they are totally out of

control with their moods, crying..

Before any stable treatment can begin, you have to get a good

7 hours to sleep first... sometimes that takes a shot of morphine

or a good pain pill for that first night and then treatment starts.

I don't know if you are at the end of your rope or if you are

getting just enough sleep to get by.. I'm passing on what my

Rheumy told me about pain control and RLS. (I see the Rheumy

for RA)

peterk profile image
peterk

Hi there. I have insomnia and am on a combination of medications and a slow release pain killer for the pain. The insomnia though remains with the sensory disturbance that I get too to my lower limbs and feet. I wrote a blog on here recently regarding what I did at night. In some ways it gives a bit of humour that is a serious issue. My meds are still being adjusted so I just hope that eventually my insomnia will cease. It affects my memory, cognition and I'm sure it might be similiar to you. I simply close and rest my eyes. It's a very difficult one.

shaney12 profile image
shaney12

Hello

I am new, just found this site - and it is 4 am and it is another sleepless night with RLS ! I have been on painkillers for a while now, but they do not seem to be working anymore - I didn't know this site was here - otherwise I think I would have come on before now. I am so tired, but I just can not sleep - pain in the ankles, arms and lower back - I can't seem to stop moving my legs around tonight ! And I have to be up in a couple of hours to start another long day x x Hope fully I will get some good advice and help on here. x x

kathyrose profile image
kathyrose

I've been where you are! Please try taking 10,000 mcg vitamin b12 sublingual. I've taken it for 3 weeks and rls is almost gone, slightest feelings of pins and needles. Please try this. It won't hurt you. TRY IT!

shaney12 profile image
shaney12 in reply to kathyrose

Thankyou Kathyrose - I will try this - I am going to the Drs next week and I have never even mentioned that I think I have this. They have always said it is a back problem, but I know it isn't as it affects most of my joints and I have that feeling that I have to move my legs and hands to get relief. I can only stay in one position in bed for about 10 mins then have to move.

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