Hi both times I've increased my sinemet the second night after I've had aweful night with headache and restless legs , no sleep. Took my morning dose of meds and within 10 mins legs back to normal and slept .
now on full dose (125) so hopefully won't happen again but has this happened to anyone else ? Is it usual reaction ? Does it mean anything?
anyone any insight into this?
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Hi, I dont know if your meds are responsible, but I suffer with restless legs and have done for years. Wasn't sure if it is PD related, but from experience I find the only way I can ease or calm it is to stand bare foot on something cold for a few minutes. It gets worse if I try and stay in bed and it is worse if I am tired (am a shift worker so this is common) and also if I have had a caffeine in the evening or before bed.
Not much help I know.
thanks for reply wendy.
can i ask as shift worker how do you manage the timing of your meds ? im a nurse doing shifts and still experimenting with times . most of my drs keep telling me its a problem they havent dealt with often but there must be plenty of shift workers coping with pd out there esp at start of illness.
any advice welcome
i ve been on Madopar 125mg x3 daily for a couple of years or so, Neupro patches 2 mg added about 6 months ago plus 20 mg Amitriptyline at night.
as I was sleeping poorly the consultant added 125 mg cr at night three weeks ago. I ve had some better nights but some terrible ones and I m getting restless body syndrome for hours on end. Presume this is because of theCR Madopar. Thought it was supposed to have the opposite effect. Getting a bit desperate due to sleep deprivation. Anyone else experienced this with CR Madopar.?
i know I need advice from PD nurse or consultant
thanks very much
I tried the equivalent Sinemet CR - for confusing reasons know as Half-Sinemet not to be confused with half a sinemet plus tablet - you can imagine the muddles that causes. I didn't find it had any effect on the muscle pains which were keeping me awake and of course they were needlessly adding to the total meds.
I found out by accident on holiday that gabapentin helped when I wanted to kill a cough I had at night which was keeping my poor room mate awake but not me.and have since had it okayed by the GP and the PD nurse. I take just one Gabapentin before I go to sleep EP. which on the face of it is hardly a therapeutic dose, I get a really satisfying sleep although it does not extend it from the 5 hours I get by on these days plus an hour's nap pm most days - I set the alarm.. Gabapentin is an epilepsy drug which they found worked well with all kinds of irritated nerve pain, e.g. sciatica. You did not explicitly mention pain but we have often become habituated to low level aches and pains.. I had such good nights on holiday that it brought home to me how sleep deprived I was.
I too suffer from RLS i don't get it every night, usually when i get over-tired. I take 5mg of Valium (diazepam) and find it works very well. A pack of 28 normally lasts me 5/6 months, if you think that would help you speak to your GP.
I see I need to clarify the point of my previous post. The need to silence a cough for my room mates sake alerted me to the fact that it dealt with the aching legs at night which were keeping me awake. Hence the comment about getting habituated to low level (not so low actually) aches and pains.
hi do you have alot of pain aswell if so try going to gp im on amitripyline they help alot with nerve pain also help with your sleep ie stop legs moving around hope this helps
Not much I can offer in the way of advice at the moment re shifts I am afraid, at the moment I am med free but was only diagnosed just over a month ago.
I don't know if you are the same but I find day shifts harder to deal with than night shifts, I seem to sleep better after nights and the work its self is busier at night which keeps me going more.
My job however is not physical as I am office based (police dispatcher), so I can imagine the fatigue for you on nights is tough.
Wishing you well, and please feel free to get in touch if there is anything we can help each other with.
Some years ago, I suffered from Restless Leg Syndrome. By chance, I was put on Ropinerol for my Parkinson's Disease and it fixed my restless legs as well. To experience body-silence again is a fabulous feeling. The trouble is, Ropinerol came with its own problems.
Thanks for comments . Just seen my consultant and is adding in sinemet cr for when sleeping so hopefully that'll do trick x
I have developed RLS over recent months and it's driving my nuts! Mostly happens in the evenings, and is worse when my meds are due, or if I've been overdoing things. Resisting the urge to move them is futile
A few of my former (mental health nursing) colleagues have suggested that I ask for a prescription of Procyclidine - has anyone else been prescribed this for RLS, and did it help you?
I have suffered from restless legs ( in different parts of the body ! ) for many many years.
I have found taking the following keeps this awful symptom 95% of the time in check.
I take 1 magnesium 375 ml tablet in the evening and 1 before I retire, eat 2-3 bananas a day and have indigestion tablets ( yes indigestion tablets) by the bed just in case it sneaks up on me during the night! Although the professional’s give me a strange look when I mention this my remedy…but it works for me. Why not try it?