The information in this thread has been very informative and helpful.
I was ambling along nicely on 3 x 100/25 Madopar daily, with my only sleep disruption being the prostate/bladder sort, normally associated for a male in his sixties.
However all that changed when I underwent a very unpleasant and stressful endoscopy procedure in January this year(2024).
Almost immediately I found my arm starting to shake as I drifted off to sleep upon going to bed, and on my return from the toilet a few hours later.
I managed to get my Madopar increased with a dose at 8pm and that settled things for a few weeks.
Unfortunately although going to sleep at 10:30 pm is not an issue, I now find myself experiencing intense dreams and waking every couple of hours with my arm shaking violently.
An overnight slow release drug as mentioned above could be just what I need.
Hello Graham … I am 70 years old & I have Atypical Parkinson’s & I take
Sinemet for it. I was on Madopar but had to stop due to my brain feeling strangely hot. I have had very regular pee urgency problems at night. I now take Betmiga for this. I have had aggressive Prostate cancer & have had my prostate removed. I also have had intense dreams & disturbing nightmares. I can go a whole night with no sleep & I can feel tired 24/7, I have just started taking Quetiapine for the nightmares. My medical team will not give me sleeping pills.
I hope some of the above is interesting & of help. Any questions please ask.
I hope that helps you Graham.
I’m still waking during the night, usually for a trip to the loo , or because I’m really hot. A couple of months ago I was put on Opicapone (1 at night), mainly to help with the severe wear off I was experiencing. I believe this also helps with sleeping. Now when I wake, I can just roll over and quickly fall asleep again. Overall, a huge difference since my original post.
Cheers
D
Hi Dusty68
I have had PD for 14 years and I can say that in all those years I have only had a full nights sleep for about half of them. I am tired when I go to bed about say
10 30 I fall fast asleep but then the light switch in my brain goes on, and I am wide awake the is sometimes around 12 30 so I only have had 2 hrs if that. I will get up as if I am staying in bed then I am tossing and turning, I have spoke to my nurse about it but no-one seem’s to have an answer. When I get up I will sometimes do house work/bake/go on my computer (although I have been told it could make me worse) but believe me I listen to music or watch a film. I don’t read any more as my corcentration span is nil, Then some time i will go to bed and when i wake up it’s 6 00 am so I congradulate myself. What I do now is not worry about sleeping all through the night, if I am not tired, I will not go to bed., but if I am tired during the day will have a cat nap. Some nights I don’t sleep at all. I feel it the next day or even the day after. I joked once and said to my hubby I’m going to get a job on nights. So as far as I can make out it is all part of PD.
That’s exactly what I do mary1947 -and it suits me too. I also remember that older people in good health do not often sleep 8 hours but ntaurally cat nap during the day if they need so it may not all be down to the Parkinson’s anyway.
Tot
When you’re awake during the night, do you feel ‘off’? That was, for the most part, my sleep issue. I was so restless and fidgety. The overnight CR co-careldopa helps a lot. Don’t get me wrong, my sleep isn’t perfect, but I’m glad to say it has improved at least 80%.
Cheers
D
Hello Dusty68, with me it can be variable - sometimes I move well other times not so good, sometimes my hands are fine other times less so. In other words, what I do during the night depends on how much my function has been affected so sometimes I can do quite a lot, for eg catching up with admin, ironing, sorting out the fridge/freezer etc (it has to be something that is mindful my neighbours will be asleep so I may load the washing machine but don’t put it on that sort of thing.) sometimes I just read or watch a bit of telly etc, I can’t speak for mary1947 but for me the big thing is not to mind that I’m awake at silly o’clock - getting frustrated by it and laying in bed willing myself to go to sleep because it is 2.00 am so I ‘should’ be asleep is the worst thing I can do, that just builds up the frustration. I simply see it as part and parcel of managing my Parkinson’s and don’t worry about it. I would add however, that this is easier to do when you’re not working, when you are able to fit your life round the Parkinson’s rather than trying to fit your life and work responsibilities around the demands of Parkinson’s when lack of sleep can cause problems. Don’t let yourself get frustrated or keep thinking you should be asleep simply because it’s night time, rather work with it, go with the flow and accept it as normal. It won’t suit everyone but I’ve been doing it this way for a long time and it suits me, you just need to change your mindset and be open to a sleep pattern that is not the traditional 8 hours a night. Hope that helps. I will be interested to hear how mary1947 responds to your question.
Tot
Hi TOT/Dusty I agree with all you have said. The thing is when you went out to work you needed your sleep, now with being in the senior club, I can nod when ever i want too, When I am in bed i can’t move to turn over. if I to get up I don’t worry what time it is I just find things to do, this morning I had my washer on 3 times then dried most of the cloths in the dryer, The one’s that were not to go into the dryer I popped them on the Cloths horse you see we don’t have gas were we are we. Another reason I get up is that I have arthritis in both my knees, so another reason why i get up. I some times find I get up, put my heated wheet packs on my knees lay on the sofa and jut nod off. Althrough this does not happen every time through/
I managed to speak to a Parkinsons Nurse a week after my original post.
She noted my situation as described in my post and prescribed (via my GP), a slow release Madopar capsule before I go to bed. Also, 1 Melatonin capsule when I make my inevitable 1- 3 am visit to the toilet.
Unfortunately there was confusion at my GP and the prescription script lay in a box until I collected it today whilst I was there on another medical matter.
As regards one’s prostate and night time loo visits you have my sympathies.
I too am a reluctant member of the T.U.R.P. club and after the last few days I fear may be in line for a repeat experience. Although with any luck my new prescription of Tamsulosin will hold it off.
Hopefully the new doses of madopar and melanonin will fix my sleep issues.
And to think I used to tease my father about the multitude of tablets and potions he took daily
As you’ll see from my reply to Steve2, I finally managed to wade through the NHS administration quagmire and obtain 2 prescriptions for slow release madopar and melatonin from the GP as per the PD nurse request.
I forgot to mention that I was walking out of the building when I noticed that the prescription form only mentioned Madopar but I knew that the Parkinson Nurse had asked for melatonin as well.
I went back to the desk and they said “your Pharmacy will already have the melatonin script”. Fortunately I had already phoned my Pharmacy and they denied all knowledge of BOTH prescriptions.
I’m sure I read something about Parkinsons and avoiding stress
Hi,
I 'm afraid I am not very competent digitally.and don’t really understand the threads and the various numbers on the forum.I think I am replying to GPD21 and my user name is Aidan.when I know what I am doing.I would like to talk about insomnia.I am 73,have been diagnosed for 19years and have had the DBS operation twice which might be of some interest to someone.By the way,I’m pretty sure my digital incompetence is not related to the operation so anyone considering the operation needn’t worry about that
Good afternoon aidan … I am 70 years old. I have Parkinson’s & I too suffer a great deal from Insomnia. The medications I take are Sinemet, Bisoprolol, Apixaban, Rampril & Amitriptyline. All of these drugs have a possible side effect of nightmares, insomnia & fatigue. Also …
People with Parkinson’s can be more prone to insomnia because of Parkinson’s symptoms, such as tremor, stiffness, pain and restless legs syndrome, that can all disturb sleep. Some medications can act as stimulants and keep you awake.
So clearly insomnia is a likely issue for all of us. I have been prescribed Quitiapene for this disorder & it does help me sleep.
If you are lying in bed & can’t sleep why don’t you get up & watch TV, read a book or do some jobs. Then when you feel tired go to bed.
Lying in bed for hours worrying that you can’t sleep is the worst thing we can do.
My pleasure aidan. Do take onboard my “get out of bed & do something if you can’t sleep” suggestion. Also obviously don’t get into bed until you are tired. Not being able to get to sleep is stressful, just embrace it & make the most of every hour in the day.
Thanks Steve,
will do.i have had chronic insomnia for several weeks now.I know people have put up with it for much longer but the time I spend asleep each night has gradually gone down from 4-5rs to 1-2 hrs.I take 2 sine met plus 5 times a day ,4 mg of slow release ropinerole once a day only.I also take 2.5 mcg of desmopressin an hour before bed.This is for the frequent loo trips and it worked reasonably well for several years but I fear it has lost its potency.I have tried various other medications to lessen the no of toilet trips I make but no real effect so I’m currently trying non drug methods eg controlled breathing, acupuncture.well its now 4am and I’ve had my 1 and a half hour sleep so will now try some tv until my wife gets up at 7.the good news is that I feel reasonably ok during sleepless nights and even during the following day apart from bags under the eyes.Dont know what if any long term damage this chronic insomnia might do?
best wishes
Aidan
Best wishes
Good morning aidan … I too have had frequent trips to the loo at night. I take Betmiga for this & it does work. I have prostate cancer & had my prostate removed so that is not the problem. Do you drink tea / coffee in the evening? I have no tea or coffee after 5pm.
The only Parkinson’s medication I take is Sinemet. 2 pills 3 times a day.
Have you spoken to your Parkinson’s nurse / medical team about the Insomnia?
hi Steve
My GP prescribed an anti -histamine,promethazine hydrochloride- and the first night I took it,I had 9hrs sleep!!Since then I have averaged 6-7hrs .unfortunaely I still get up 4or 5 times p night to empty my bladder.I don’t drink anything after 6pm and keep to all the sleep hygiene factors.sorry,must go but thanks for your interest
best wishes
Aidan
The latest information is that the Madopar CR 100mg capsule doesn’t seem to be making a big difference to my lack of sleep situation, and likewise as regards the Melatonin pill.
When I do wake up, it’s a certainty that my right arm will almost immediately go into cocktail shaking mode.
My annual review with the Consultant is not due in January but I’m happy to wait until then to increase dosages or try some other drug(s).
Meantime, I have been put on two more drugs to deal with my prostate issues. They seem to be working as I now need to visit the toilet no more than 3 times a night…it’s a sad situation when that’s considered an improvement
Like Aiden, I’ve tried reducing my liquids intake in the evening but that only seems to reduce the amount passed during each toilet visit.
I’m thinking of inventing a new clock face…instead of numbers it’ll have pictures of all the pills I have to take day and night
Good morning to all my friends on PF. I have had PD for 14 years and the first thing that was PD I could not turn over in bed, and since then if I have a good nights sleep, i will fly the flag, in my 14 years i think that in all I can say that 1 year of good nights sleep is all I have Had . At night my meds are Madopar CR 100mg capsule I have to take 3, do I sleep any better ?ZZ???Z???ZZZ???Z but we are all different with meds.,
Well Mary1947, 3 capsules of Madopar CR 100mg sounds like the sort of dose I should take.
Do you space them out as you wake up during the night?
Also do you try to dove-tail taking the first CR one a couple of hours your last dose of daily Madopar so as to provide a seamless effect?
I’d be interested to know what other folks find works for them…presumably after a bit of ‘trial and error’.
, or because I’m really hot. A couple of months ago I was put on Opicapone (1 at night), mainly to help with the severe wear off I was experiencing. I believe this also helps with sleeping. Now when I wake, I can just roll over and quickly fall asleep again. Overall, a huge difference since my original post.
