Why do so many people with PD have trouble sleeping?

I am writing this question at 3.30 a.m. I was diagnosed about 6 years ago and this has not been a problem for me, until recently. I know that an awful lot of people have become 'night owls' and I have recently joined you.

I seem to sleep for about 3 hours, wake and have just recently started taking an extra tablet. Sometimes, I then sleep for short periods, sometimes not. I have always needed my 8 hours sleep as,unlike my husband, I cannot cat nap during the day.

As tiredness is one of the symptoms of PD, why is sleep so difficult?

At the moment my 'official, day starts at 5,30 a.m. so am really shattered by evening. I should sleep like a log, but I don't. Am hoping that this is only a passing phase, but maybe not.

When diagnosed was told that tremor is not active when you are asleep, so this can't be waking me.

I realise that no one has the answer to this question and can only think my brain is getting more scrambled!!

Any thoughts would be appreciated.

24 Replies

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  • For me it is because I cannot roll over easily.I come fully awake when i need to change positions.

  • Thanks for this. At the moment I don't have too much of a problem with turning over, but can see how this could wake you.

  • Hi,

    I have the same problem. In addition to the Sinemet I take 3 times a day

    My Dr. just put me on Sinemet 50-200 one tablet at bedtime. Last night was my first night. I will keep you posted.

    Glenn

  • Hi Court,

    Welcome to the night shift,Sleep or the lake of it are now a major prob for me, i tryed going for a walk last night , that never worked , i usually go to bed around 11ish toss and turn for about an hr then get up as i dont want to disturb my wife. i dont feel tierd at any point in the day so i dont knap, i have now got to the point that i just dont want to go to bed any more, iv tryed talking to my GP , that was a waste of his time and more to the point a waste of mine, i dont know the answere but if i find it , i will surely spread the news

    Take care and have a good day in the Pool

    Al

  • Thanks for replying. I was hoping it was only a temporary blip, but looks as though I might be stuck with it.

    By the way, my husband can sleep through anything - which is really annoying.

  • Ah, yes, the Night Shift. Pills at 9. Pills at 10. Pee. Pills at 1. Pills at 2. Release water pills required. Mmmmm? SNACK attack. Nap. Pills at 4. World New Now comes on. Miss it, fall asleep. Whoops...must eat before take 6 o clock pills. Pills at 6. COFFEE !. Finally fall asleep and miss wife going to work. And so begins another day. Pills at 9, etc, etc, etc. Lucky I am retired and can nap all day, in between the pill times.

  • I Dont wish this on anyone, its a pain

    Al

  • I wonder if I am less active and move slower therefore I am not as tired as I use to be.

    On days I spend with grandbabies, they wear me out, I seem to sleep better.

    I have always been able to nap anytime and anywhere.

  • Hi Court,

    I too have this problem. I'm up late most nights, I get up fairly early as well. When I awake in the middle of the night, i don't fall back to sleep easily, like Jerebet I have problems rolling over, albeit nowhere near as bad as before my DBS. My doctors have suggested that part of my issue might be meds side effects and part might be PD related fatigue.

    On an earlier blog someone else was looking for things to offset the sleep problem, you might try searching for it or ask on here who remembers.

    I have occaisional luck with an Herbal Supplement sold at VitaminShoppe.com called Snooze-In and edible medical marijuana - when available. My neurologist prescribed an extended release version of carbidopa/levadopa which i take just before going to bed. (It helps a little.) Together these things help maybe half of the time.

    Good luck!

    Steve (Bisbee)

  • This was actually one of my first symptoms (didn't know it then) - Mirapex was helping and hurting - it helped get to sleep with my legs and arms , but it helped wake me up after a couple of hours. by not taking it after 4 PM, that helped a little, Eating a banana at night seems to help, and a regular, fairly strenuous exercise routine helps. That said - a good night for me is still 2 blocks of 3 hours each.

  • Hi everyone ..

    Who said that you don't get a tremor while asleep . Parkinsons tremor generall happens when at rest . If you notice once you grab hold of something it stops . I fact My husband uses a bed grab rail for getting in and out and turning in bed . He usually ends up holding onto it all night .

    His body jumps jerks quite a number of times during sleep . This obviously disturbs him , me as well . Most people get restless legs and rapid eye movement as well .

    He takes Sinemet Plus along with a Neuro patch , then at bedtime . Sinemet CR 250 along with Amitriptyine 25mg . this is prescribed for nerve pain and restless leg , even though it is an antidepressant

    Although not a perfect night some ights are better than others , the same goes for the days . It has helped him enormously .. Unfortunately not all GPs no very nuch about Parkinsons .

  • I wish I knew. I take prescription clonapin plus a C/L time release, melatonin and valerian capsules. Still takes me an hour or two to fall asleep thanks to creepy crawly legs, and sometimes I watch Turner Classic Movies all night. Sometimes I wake up at 6 and rarely at 10 a.m. Oh well retired and living alone so no pressure unless I have an a.m. appointment!

  • I, like a lot of you have problems sleeping at night. For me, I wake up to change position and it is all over. Awake and hard to get back asleep. My doctor put me on the extended release Senemet and Serequel at bedtime and it has worked well for me. Might want to ask your Dr about it also if you are seeing animals running around the house at night and you don't own any!!!! LOL!! Serequel is good for making them disappear and has a sleepy side effect.

  • I have an opposite effect. I have had symptoms for years but just recently diagnosed (12-07-2011). I had had a great deal of problems sleeping before starting meds for my PD. I also was getting stiff in my hips and back, along with pain also. Now I actually get sleepy after taking meds 3 times a day. The stiffness and pain are at least 70 percent better. I also have nausea but getting better. Two weeks after diagnoses I developed Shingles, internal and then external so there went my sleep. When I get some relief from pain I sleep pretty good but the pain is what is keeping me awake now. Before the shingles started I got a couple of weeks of decent (not great ) sleep. I am taking Pramipexole 0.25 mg. 3 times a day. I pray to God you get some relief. I have suffered for years before the diagnoses of PD and starting meds.so I know how it is to not sleep much. I have also had several back surgeries that give me pain , but since taking PD meds I think a lot of the pain was the PD untreated. GOD BLESS YOU

  • I have this problem too.Has anybody tried OTC sleeping pills like Sominex?

    Anybody ever read Stephen Kings book Insonmia? That"s how I feel sometime like I'm going to start seeing things living in the shadows of the night.

  • Hi Court, I have had this problem for years. I was recently diagnosed with PD (June 2011). The PD meds (Sinemet and Requip) make me sleepy; but no sleep! I sometimes feel like a walking zombie. I'm up all hours of the night traveling from room to room in the house. I also take a Xanax before bedtime....sometimes I get 1 hour of sleep, sometimes 2-5....I never know. Most times, it is broken sleep. I usually go a string of days with little to no sleep, then I will crash. I exercise 4-6 times a week....that doesn't help me with sleep either. Sleep deprivation is awful! I wish I had an answer.

  • Thanks to everyone for their very interesting answers. This problem seems to affect an awful lot of people. Some think it is down to the meds and I wonder if these could be afecting the part of the brain that controls our sleep patterns. Know nothing about this, but perhaps someone else does,

    Sue

  • It's the meds.

  • The meds certainly are responsible for some people. There have also been interesting studies on REM sleep disorder and a later diagnosis of PD.

    There is alot of information on line about the problems of sleep and PD. Here are one information sheet and one article that may be of interest.

    parkinsons.org.uk/pdf/FS30_...

    sciencedaily.com/releases/2...

  • Thank you. This types of post is so helpful in answering a perplexing question. Is there a place for answers to common questions that we can refer to when frequent subjects come up ? Some kind of permanent list of helpful links to articles and resources. there probably is one already and just have not searched for it.

  • Hello CheriH

    Would you mind giving us an update on your sleep problems? First, you may have improved since your post above, but secondly, some on this site may have suggestions for you. I have a couple of ideas for you to consider.

    Regards

    Norton1

  • hi

    i have psp and no meds 2 take for it

    but my sleep pattern is now v disrupted and i have 2 go 2 the loo 3/4 times a night(better than on an hourly basis now i take oxybutanin)

    but i tend 2 wake at 4 am and am v restless - That isi the psp I know btu i am so tired durign the day but cannot nap like i used to in the afternoons either

    i think it is the changes in hte brain

    so iit is a little better as i am takign trazadone at night but am frequentlyh awake in the small hours too

    i too need to get more sleep but how i donot know at the mo

    love jill

    :-)

  • Wow...there's a whole world out there awake with me! I can tell you all that I simply do not sleep!! The reasons are many....trouble turning, pain in the back and hips...terrible pain! Restless legs , the list goes on.

    I find myself not even wanting to get into a bed that I have applied the most luxurious bedding to. I cannot sleep next to my wonderful husband!

    i wish there was a resolution to this problem....

    Sleepless in Pa.

  • I call 3 am our "witching hour". I am either up until that time or up at 4 am. Have read recently that it is very common to only be able to sleep a max of 4 hours, so broken sleep is the norm for us. We lose some melanin too along with dopa, and both are involved in sleep regulation and our circadian rhythm. Recently I slept one night for a glorious 7 hours!!! My body was in shock the next morning ;-)

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