sleep Problems: I am having a difficult... - Cure Parkinson's

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sleep Problems

tandolino profile image

I am having a difficult time getting into a comfortable position to sleep. I have had PD for 5 years, I am 62. I work full time so it would be great if I could get a good nights rest. I wish I could just sleep on my back as it would be easier to get into that position. But I sleep best on my side. When it come time to roll over it is a lot of work, getting my knees bent, getting the pillow under my neck just right...

I go to bed around 11PM and I wake up 5:15-530 am. I would like to go to bed earlier, but it is then a long night rolling over and trying to get in a position where I am comfortable.

I wake up tired and I have trouble staying awake at work and also driving is a challenge.

I saw my nero and he prescribed (1) 25/100 ER taken at night.

I am currently taking (2-3 tablets) 25/100 at 7:00 am so i can stop the tremors on week days so I can work, (2-3 tablets) 25/100 at 11:00 am. and (2 tablets) 25/100 at 3:00 pm.

I think if I could get a good nights sleep I could use less c/l. I am concerned about the amount of c/l so when I am home I use less and also on weekends, this reduces my quality of life at these times, but I don't know what else to do.

I would welcome any ideas. i am thinking a new bed with adjustable firmness and adjustable height to raise up the head of the bed,

thanks for listening to me, I am tired.

18 Replies

You have my utmost sympathy. Lack of sleep is a terrible thing. I do not have anything to offer as far as PD advice, but maybe in other ways (that I hope are helpful)...

I also sleep on my side, but I do not roll over. Perhaps reducing or eliminating your need to roll over may give some relief?

1. Positioning entire body for comfort: Here is a page with tips and video:

comfycomfy.com/blogs/news/t...

2. Perhaps use something to discourage rolling over while you're asleep, such as a folded blanket snugged up behind your back (I did this once and found it wonderfully comforting!). I've heard of people sewing a pocket into the back of their pj's for a golfball or tennis ball.

If you go for the adjustable bed, do you think you will be able to stay on your back? If not, my experience has been that side-sleeping in that position resulted in back discomfort and also a tendency to 'slide' into an uncomfortable position that would disturb my sleep (but that may not be the case for you!).

One more thing: I'm a huge proponent of being checked for sleep apnea. The test can even be done at home, although if it shows severe apnea you'd probably be asked to also do an in-house sleep test.

If anyone has sleep apnea, Apnea Board Forum is a great resource for help/advice in using your equipment successfully.

Best wishes to you, tandolino. I hope you find a solution that works well for you.

tandolino profile image
tandolino in reply to

Thanks, good point on the adjustable bed. i looked at the comfy video and i will try the extra pillows. i have never been able to sleep in one position all night, my arm falls asleep or there is some other discomfort. maybe the comfy tips will help.

Likely a dysfunction of your pineal gland. Two extremely important hormones naturally secreted by this gland cannot be presently supplemented, for some reason.:

healthunlocked.com/cure-par...

Suggestion: try supplementing Melatonin (available) at small doses (1 to 3mg). Then you can go up to 10 mg and much more. Do inform your neurologist in this case.

Resano profile image
Resano in reply to Resano

Perhaps controlled-release melatonin would be better, given the poor biovailability of oral melatonin. Let us also bear in mind that the biosynthesis of the other important sleep hormone (further to acetylation of melatonin by N-acetyl transferase) takes places between 10pm and 6am.

I do not have the link but there was a recent report that sleeping on the back is worse for Parkinson's.

I too have some challenge getting comfortable. I find that a pillow in front of me helps

ForViolet profile image
ForViolet in reply to park_bear

Yes, I remember that and telling my husband about it. Just lately he'd been sleeping on his back without turning at all. Now (he says) he is trying to turn over.

He once slept on an inclined bed with about a 3" incline at the head and said he really slept well. But I guess not well enough to adjust his own bed.

park_bear profile image
park_bear in reply to ForViolet

Years ago when I had neck problems I slept on an actual recliner for a while.

My sleep has improved greatly since I gave up trying to lay down. I sleep on a tower of 3 pillows so I’m at quite an angle. Plus 10-20 mg melatonin

Blue blocker glasses after 9 pm

CALM magnesium 1 1/2 hours before bed

tandolino profile image
tandolino in reply to

are you on your back on the tower of 3 pillows?

in reply to tandolino

Not quite my back but not completely my side either. Combo I guess you could say.I preferred my side for years but my shoulder doesn’t allow it anymore and my arms fall asleep. It’s much like creating a recliner out of pillows. When my arms are cushioned with pillows neuropathy is decreased.

BTW I’m only 46 so although I have PD I’m at a different stage of life

Annieartist profile image
Annieartist in reply to

How does one get melatonin in Uk?

Dragona profile image
Dragona in reply to Annieartist

Hi I get mine from piping rock very good price and free shipping, excellent company

Had PD for 5+ and 73. If I sleep six hours it’s rare. I normally sleep for 3-4. What helps me besides melatonin, is a dose of c/l when I retire and a dose when I get up 1-2am. Every day is different nothing seems to be consistent, I just take day by day.

Tandolino, sorry to hear you are having sleep problems. A good night's sleep makes a big difference.

I can tell you what I do, and it makes for a comfortable night's sleep for me. but every body is different. (I set my alarm every few hours to get up and take another pill. I don't know how much I would turn over if I didn't have an alarm wake me up.)

I start off just before bedtime by applying a magnesium gel to my neck and lower legs. This helps me relax and prevents me from awakening in the middle of the night with leg cramps.

(This next part came from a physical therapist.) I start off sleeping on my back. I have a head pillow that is not too thick which I bunch up slightly underneath the backward C curve in my neck to give it support. Then, I take a thick hand towel, fold it in thirds lengthwise, and place it under my waist so that it is running perpendicular to my body. Lastly, I take a small or medium size pillow and place it under my knees for support of my lower spine. Sometimes I have to bunch the pillow under my knees a little for it to feel comfortable, sometimes not.

When I wake up slightly I turn over on my side. I bunch the head pillow even more under my neck, both to support my neck and to keep my head from being too much weight on my shoulder. The hand towel is still under my waist. I place the pillow that was under my knees to now be between my knees (remember, it's not a large pillow). I take another small to medium pillow, fold it in half and hug it lightly. This gives me a supportive place to put my arms. I take yet another small to medium pillow and place it from about my mid back down to my tail bone. I wedge it under my body slightly. This helps me to completely relax my back while I'm on my side and not have to use any of my muscles to hold my body in place. (It would probably also keep me from rolling off the edge of the bed if I was closer to the edge than I thought.)

When I turn over again, I go to the other side. If I turn over once more, I go back to my back.

All this turning distributes the pressure more evenly. You're probably thinking that all this turning and pillow adjusting would also keep you awake, not help you sleep better. I've adapted this sleeping posture over a few years time so I can almost do i t in my sleep (pun intended). When I get up in the mornings, my body feels good and I feel rested.

If you decide to try any part of this or any new sleeping posture, please take it slowly so you can see how your body reacts. Maybe just try it out in a short, weekend nap. A few minutes of a new sleeping posture might feel great, but a few hours of the same new posture might leave you in intense pain.

I wish you wellness.

tandolino,, always tired and working full time is a rough combo, sorry for your situation. Last thing you probably want to hear is finding 30 minutes to exercise, but it can give you that "good" tired feeling that might help you get a deeper, more restful sleep and it's something you will need for PD as time moves on.

For me 14 years dx'd and progressing too fast the last 2.5 years, I take one of my daily doses of 1 25/100 IR plus mucuna (mg dependent on how close to bed/sleep) which hopefully gets me comfortable to read a bit and then take 1 50/200 ER when shutting the lights. At this point I am comfortable enough to fall asleep and stay asleep until the ER kicks in-45 minutes for me. You could switch over to the 50/200 ER, seems like your neuro should have suggested it knowing how lousy your sleep is. Hang in and stay strong to keep the PD monster in the basement!

Eric

Hi I am 60 and here is what I did. I shifted the Rytary by two hours toward the night time. That puts some Rytary in your blood and helps reduce the restless leg at night. I also bought deep sleep liquid (2 oz or 4 oz) (from amazon)( the alcohol version).

amazon.com/Deep-Sleep-Suppl...

Its pricey but it works. Use 30 drops before bed. It is more effective than melatonin or marijuana possibly due to the valerian and has no bad side effects I know about. Best Wishes, Paul

Sleep is critical for PD people. I have tried many different positions and combinations of medications. Sleeping on my back induces sleep apnea so I have to keep that one in check. Sleeping on the side and sleeping on my belly are the way I deal with the problem. Sleeping on the belly comfortably implies that you have good flexibility of the neck. This is something that can be achieved with exercise and stretching. I take one CR 50/200 Sinemet 30 minutes before bedtime. I found this to be a better option than getting up in the middle of the night to take 1 + 1/2 IR 10/100 Sinemet. I am also experimenting with an add-on device to my bed similar to the horseshoe pillow used by massage therapists. This one is a work in progress but when I position myself right I can get a good three hours of deep sleep on my belly. Being under the influence of medication (Sinemet) throughout the night reduces muscle rigidity and improves our ability to move around when we need to.

thanks very much, i am going to give your ideas a try. i appreciate it.

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