I'm after some advice and your opinions. I take 4 tablets of Madopar a day, my last about 10.15pm just as im going to bed. Some nights i fall a sleep quite quickly, but of late i'm finding it more difficult. This is due to being unable to settle or get comfy. Its either fidgety arms and legs, or a sore shoulder, or just a really weird sensation that i just need to move. So an hour or 2 after i've gone to bed and taken the meds i'm still awake, though tired.
I'm thinking that the issue is my meds are wearing off and the new meds have yet to kick in. so until this happens i'm going to feel uncomfortable. So taking meds so close to bedtime is probably not a good idea. The problem i have is i need to take 4 tablets a day and spread them out as much as possible. so i wake at 7.30, take tablets, then 12.30, 5.30 and finally 10/10.15ish.
Does anyone else have this issue? do you think i'm right that the meds are the issue and does anyone have any suggestions to improve my sleeping.
The really weird sensation of needing to move might be the old restless legs syndrome. I get it sometimes and two things seem to help. First clench the buttocks really tight and hold. Repeat a few times. This works when the problem is coming from the sciatic nerve. The other thing is to drink some tonic water during the day. I know that sounds unlikely but it was recommended to me and worked for me and several people I recommended it to. But it doesn`t work for everyone. I hope it works for you.
Go and have a chat with your pd nurse,they will have the best answers for you,everybody is different and some more sensitive to meds.Think this would be your best option.or give them a ring
Thanks guys. Had a terrible nights sleep last night. I'm on meds for the restless legs already. I've heard that tonic water works, i hate the stuff, but might be worth trying while i get hold of my pd nurse.
I also take 4 Madopar a day along with 10mg selegeline which I take an hour after my first madopar which is usally around 7,then 12 then 5, at night i take the 125 dose of controlled release around 10 to 10 30 this definitely improved my sleeping so this might be an idea,but I have been on this for a bit,and feel it is now not helping so much,like you my legs bother me in bed at times,think the suggestion of the pd nurse is your best option.Cheers
Earlier Hatknitter suggested Tonic Water as a cure for a sleeping problem. I was having a problem with my right leg waking me with a tired ache followed by a strong tremor. It lasted between half an hour to an hour and was getting me down. So, not sure what to expect, I began drinking a half a litre of Tonic Water every day. Hey presto. Strange but true, I have now gone over a week without a hint of a tremor at all.
That's good news about taking tonic water for tremors, trouble is I don't like the taste of it,does it have the same medicinal purposes if it's mixed with gin to hide the taste!
The really good news is that tonic water is just as good mixed with other drinks, alcoholic if you like. It seems that it`s the quinine what does it. I know it doesn`t work for everyone but it always works for me. Hope you will find the same. Don`t forget to add a slice of lemon if you mix it with gin, might as well get all the benefit of your medicinal drink. Banjo is right, it doesn`t have to be taken at night, any time seems to work. So you can medicate while you socialise.
Thanksh for that advish it mixesh very well (hic) and it worksh very well for cramps, I shleep well at night cos i'm so pi.......d I can't feel a dam thing!!
Hi Girlred......I have had problems with the restless legs for many years and had very little sleep in a very long time. I tried everything and it was driving me mad, apparently it is very common with PD but i didnt know that at the time. I was diagnosed in feb 2013 and put straight on Requip XL fantastic, from that very first tablet the restless legs stopped and i slept.!!! I am now on Requip XL at night and Co-beneldopa 3 times a day. Requip is also prescribed for restless legs in people that do not have PD and a pal of mine takes them just for that and it works wonders. Good luck and i hope to hear that you are very soon enjoying a good nights sleep. zzzzzzzzzzzzz
I have really bad trouble sleeping too - I've got to say its my least favourite bit of pd (not that I've got a favourite mind you!) I'm on madopar 4 times a day plus a slow release at night. I take at 7,11,3 & & 7 then the madopar cr (slow release)whatever time I go to bed. I get to sleep ok but my issue is staying asleep. Averaging around 4 hours max sleep a day if I'm lucky. I personally think it may be worth talking to your consultant about taking the slow release at night so you are more evenly spaced with your timings ... It's such a trek to get into the right window with your meds - I do hope you manage to get yours sorted soon. Oh and the tonic idea is today's new try ... With gin and a slice of course - don't mind if I do!
i have had tremor intensive pd since 2001. started sinemet feb 2012. was on 100 mg 3/d. seemed to help with strength and movement, updated to 150 mg after five mo. after one year tremor would worsen and movement diminish so had difficulty stand from chair etc and this would happen one to two hours after taking meds. i had never experienced wearing off so thought i was now allergic. i now take 150 mg sinemet three times/day with comtan, 1 pm, 4 pm, 7 pm, when i am on my tremor stops, first time in thirteen years. my last dose is wearing off when i go to bed. my doc says that i build up a reserve of dopamine during the night that is why i am able to function in the am with very little tremor. if i were to take meds at bed time they would be wearing off just when i need to get out of bed to void which is difficult in that state. so i prefer to be in wearing off at bed time as i will be better able to move in three hours. the only drawback is that i have to often have to put up with tremor for half an hour or so before falling asleep. i only wish i could spread out my dose to four hours, maximum with the added comtan is 3.5 hrs. does anyone else have a similar experience?
Every night, despite DBS a year and a half ago, i can set my watch by it, if i was to wear one, I get a restless left leg.
My cure is a half glass of red wine and go to sleep.
im not allowed requip as I suffered catastrophic I/OCD Not even a wee dose
500ml, what time so you take it? At present I have me cocoa at 9-10ish followed by restless leg at 23:13 and 28 seconds, and my sleep inducing wine, followed by umpteen trips to the bogiteria.
Is it thru the day or start after dinner or in place of the cocoa, wine, cocoa and wine?
its a bloody wine field? See what i did there? No, never mind.
very curious to know dies it change with the clocks?
eck. i had dbs 2yrs ago did you find that when you went for tuneing of dbs you come away feeling great,and feel like you never had pd.then it would only last a few days,dont get me wrong tremors & dyskinesia gone,but balance &walking not to hot!
by the way i know i bang on about gabapentin,but i used to have a lot of trouble with my legs now all problems gone thanks to gab !
Turnip, nope is the answer. Although I didn't check for definite during that particular day. As I said, I don't wear a watch. A lot of it is assumption that it's 23:13 and 28 seconds.
Gus, I hear you. Good to know there is something to try re restless legs.
I got told the walking balance thing was a pay off for the tremor dyskenisia. However, a bit of Physio helped. Years of lack of movement caused my back to lock up, it took a few massages to free it up, back strengthening and balance board exercise helped as did smartphone metronome.
thats funny goes i got told it was a bit of a trade off aswell ! oh well at least i can eat & drink. my back of my neck plays me up aswell if i cut my own food ie meat ! im in pain. go for lumber facet joint injections monday on my back ,been waiting 12 months again.takes away all the pain! going to ask if anything for neck.thanks eck
My PN has recommended patches, which release my meds 24hrs a day, and is hoping this will improve my sleeping pattern. At the moment I'm still struggling, as its increased the restless legs, which i had gotten rid of. But its trail and error i suppose i've just increased the dosage from 2mg to 4, and i think i'm going to have to go for 6! If someone could just knock me out, I'd just love 8 hours solid sleep! No riggling, no shoulder aches, no tired legs, just pure sleep.