Sleep problems

I'm back again for a bit more advice please.
I like a lot of people am having problems waking at all sorts of times at daft o'clock in the early hours. Really starting to be an issue now.
Can I ask what across the counter remedies have been tried and whether any have helped. I'm on Ropinirole and Propranolol and I know that I may have to see the doc (again) but if I go armed with a bit of info I may not seem like a complete dope.
Grateful for any info.
Yours , sleepyhead boba.
Hello Boba

There are high percentage of People with Parkinson's that have sleep problems.

See the information sheet, amongst the publications on the home page

Hi Boba, re your sleep probs. Join the club! It is 1.11am at present & I am up, but hope to try bed again in an hour or so. I have just accepted the fact that I will never have "normal" sleep patterns again & if I want to get up, well I just do.What the hell,it doesn't bother me. Gets my wife's goat tho'
Hi again. Sorry for the delay in responding been working away.
I did read the paper Roz , just hoped that maybe someone may have found some over the counter stuff that may help , something like Nytol perhaps. I'll mention it to the doc next time I see him but thanks anyway.
Christopher its 5am and I've been up 2 hours already !! Aaaah!!
I geuss I'll have to get the special specs again with the wide awake eyes cos I'll be a noddin at my desk.
C yer. Boba.
Hello Boba,

My husband Pat who has PD has severe sleep problems. He will get four hours on a good rare night and between 1 - 2 as a norm. He does have some 'sleepers' (clomazapam) which he will take about every 6 weeks when he gets desperate. The trade off is being 'off' for the whole of the next day.

We are in the enviable position of being retired, so we just work around it. It must be awful for younger people who have families and jobs.

Find regards,

Hi. Up early again, tho' slept pretty well. Yes being retired does help. If I was still working I would have had to work only mornings. I do feel for those who have to work full time. My main problem is my wife is really fed up with me dozing off in front of the tele of an evening, but I just can't help it. What a stupid disease PD is!!!!!!!!
Hi all, 11.5 mo since diagnosis, still fighting with exercise and supplements. I'm assuming that after starting meds things will get worse so I'm hanging in there as best I can. Still, I find that during the week I wake in the early hours and worry my way through to the dawn. If it's earlier than 0200 I might take a Lemsip or a Tylenol PM and a glass of wine.
At the weekends I really work hard :grin: at recharging my "sleep bank". On a good weekend I typically have a champagne brunch Sat and Sun and get sleep in the afternoon, then I ensure I'm soused enough to sleep through the nights with a Tylenol pm. Romance? I understand there'll be plenty of that once I start the Requip.
Monday does tend to roll around pretty quickly at that rate though!
I understand a combination of medication, depression/anxiety and PD itself due to the chemical changes in the brain play a large role with sleep problems. Prior to diagnosis i didn't sleep well at all and realized now it was due to anxiety and depression made worse from not knowing why i felt the way i did. In the last four years of being diagnosed and taking medication i've learned by keeping a sleep diary that by changing medication and changing my bedtime routine i've most nights been able to get a better night sleep. By changing medication and turning of the computer at a sensible hour because the computer gives a false sense of awakeness and over stimulates the mind, i now most nights grab 6-8 hours sleep. I try not to nap in the day and if i do only for a hour at the most because any more i find i want to stay up to early hours of the morning. A psychiatrist told me that if you can't sleep because thoughts are whirling round in your head or you feel anxious write those thoughts on a piece of paper and put them to one side and tell yourself you'll deal with them in the morning by which time the thoughts and anxieties are most times more than halved. I find a milky drink and a warm shower relax me enough to go to bed. I still have the odd night i stay up to silly o'clock but i know if i do this every night the PD will dominate the next day.Also i the Neupro patch seems to help the restless leg. I tried to withdraw it all together but the restless leg got bad so had to up it again slightly and introduce selegile which seems to have done the trick, well for now anyway. I speak from my own personal experience and know that for some people its very difficult to develop a good sleep pattern and i truly feel for them because i know how it messes with your head and controlling your PD sometimes creating problems with hallucinations and pschosis. I found the following info and thoughlt i'd share it with you.....

People who suffer from Parkinson’s disease are usually left to deal with a range of symptoms that can make day-to-day tasks difficult. Among these, sleep — one of our most basic needs — can be disrupted and hard to achieve. Often, Parkinson’s patients have sleep problems that are caused by the disease itself, or are brought on by medicines used to treat or help the patient.

Sleep problems associated with Parkinson’s usually include an inability to fall asleep, difficulty in staying asleep, uncomfortable sensations in the legs at night (a condition known as restless legs syndrome), nightmares, acting out of dreams that might lead to accidents or injuries, and daytime drowsiness. If you are encountering any of these symptoms, never take over-the-counter sleeping medicines to help the problem without first consulting your doctor. Some over-the-counter and prescription medicines cause or worsen sleep problems.

What can I do to help my sleep problem?
Because the sleep disturbance might be caused by other medicines that are being prescribed to cope with Parkinson’s disease, you should consult your doctor about possible alternative medicines that could be used instead that will not interfere with sleep.

A sleep disturbance might also indicate depression in a person who has Parkinson’s disease. Depression might bring on fatigue, a changed level of physical and social activity, and a tendency to not sleep soundly or not at all. If these problems persist you should discuss them with your doctor.

Following are some tips for Parkinson’s patients to promote more restful sleep.

Avoid stimulants such as caffeine within six hours of bed time.
Do not take long naps during the day, and participate in activities that keep you physically busy.
Avoid using your bedroom for activities other than sleeping, such as reading, watching television, or working.
Remedies such as a warm glass of milk, a massage, and an expression of affection might also help a Parkinson’s patient to sleep better. Also, a hot shower or bath can be helpful in helping a patient to relax.
Depression, which is often common among Parkinson’s patients, can also contribute to insomnia. Doctors can usually prescribe an antidepressant or a sedative to aid in sleep. However, studies have shown that taking measures to promote relaxation and good sleep habits work better than sleeping pills.

Sleep, sleep,
Come my way.
Let me sleep,
So I can start a new day.

Sleep, sleep,
I take my pill.
My mind won't sleep,
Too active with chills.

Sleep, sleep,
Show me how.
What's that, sleep,
How now brown cow?

Sleep, sleep,
My brain is delirious.
Stop playing tricks, sleep,
You're making me furious.

Forgot to mention there is a useful information sheet about PD and sleep problems by the PDS which you can view via publications on the home page.

Sorry, Roz already kindly pointed out about the information sheet, beg your pardon Roz :confused:

Hi BoBo,
Sleep can be a problem at the best of times. Needless to say my husband always manages to snore his head off.
We hear of many over the counter methods for this problem but we never know how these take effect till we use them. A more natural method may be an idea for some. Meditition.
This helps to slow down the system and quiet the inner activity [thoughts]. It can take a bit of practice but it can be very successful. Meditition tapes which help to guide you can be useful,moving on to other tapes, not guided as you progress.
I have just finished a fantastic book which is a true story, great read. Torn Apart by Derek Flory available from Amazon.
Sorry Boba, excuse my spelling.
My problem is OH twitching all night, any solutions to this please?
Hi , Many , many thanks to all who have responded with advice and just general support. Very grateful to you all.
Obviously the self medication route perhaps is not the way , more of a change in daily life style as Cutipie suggests and as Christopher suggests trying not to fall asleep in front of the tele , thats a tough one though.
Anyway I promise that I'll try if not all , most of the suggestions.

Benji has asked what can be done for the night time twitching. My wife says that I've always twitched (30+ years) and I'm afraid I've never found a cure. So come on everybody suggestions for Benji please.
Hi Benji

I too suffer from twitching during the night - sometimes so strong that the bed shakes. I am never aware of it but get tired during the day. I cannot be a passenger in a car for a long journey for more than 15 mins before I have to sleep. I am not yet on PD treatment but am hoping that that might do the trick come December - my next neuro appointment.

Hi boba,
I too have had a lot of trouble sleeping for about the past four or five years. There were times when I would only get about 2 hours. I was told that there was nothing that could be prescribed to help.
I have however, for the last couple of months inexplicably started to sleep better. I still wake up a few times during the night but I am getting 6 or 7 hours sleep on a good night.
This isn't much help to you really but I am wondering if there is any one else who has found this. Perhaps it has taken 6 years for my brain to adapt to the medication.
A PwP who has followed the Improvement Programme diet for twelve months now reports a full night's sleep along with no more tremors, able to smile again, walk normally and return of sense of smell. It can be done without meds. He never had any.

Thanks, I hope I get some advice. Maybe your wife should be on the site too!!!LOL. She could tell me how she puts up with it.


OH is also unaware that the bed shakes. How can that be when I am being turned into a milkshake? Make that a dry martini, Bond style!

You might want to look at:

It talks about Periodic Limb Movement Disorder.

Hope this helps

Chewexpert, where do I find out about the Improvement Programme diet? I have been suffering from lack of sleep and I am now making sure I do not watch television or the computer just before I try and sleep. I have also started eating a banana just before bedtime and I sm starting to sleep better.