How do you get good sleep?: I've come to... - Cure Parkinson's

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How do you get good sleep?

zawy profile image
zawy
33 Replies

I've come to realize lack of sleep is the greatest cause of decreasing my quality of life. Does anyone have things they do to try to get better sleep?

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zawy profile image
zawy
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33 Replies
etterus profile image
etterus

Sleep deprivation is a human rights violation and is considered to be torture. We can live longer without food and water. It is essential for the cell nutrition and waste removal process that is probably related to the abnormal alpha synuclein malformation that is accumulating in PD patients.

Prior to DBS I was taking 5 mg of ambien 4x a night. Now I'm down to 2.5 mg. I am napping more through the day. Cannabis is considered to be very good... even thought to be a neuro protectant.

zawy profile image
zawy in reply to etterus

I've tried cannabis a few times the past few weeks, and I am not sure it is improving my "sleep deprivation" if I do it before bed. I sleep, but it is still a short sleep (5 to 6 hours) and I wake up to early, and it seems to still not be a deep sleep. I did not notice an improvement compared to not using it at night. However, if I feel really miserable it helps. It seems to be capable of breaking cycles of depression. For example, if I wake up at 3 am extremely disoriented from lack of sleep and still not able to sleep in the least, it's a good diversion that ends in too much food consumption and sleep. In that case, the sleep seems to do some good. Nyquil's zzzquil seems to also work, but again it seems to be something for intermittent use. Coming off daily cannabis might have some withdrawal time of less sleep and depression. Melatonin seems to have some benefit, but I can't take as much as it seems I need because then I'm very drowsy the next day just from the melatonin (my max is 2 mg). When I was 20 years younger 0.5 mg would really knock me out that night and the next day, but now it hardly has an effect. I also wonder if taking melatonin all the time would reduce my body's ability to create it. Exhausting exercise during the day might be the best thing.

12stargate profile image
12stargate in reply to etterus

Where can i get cannabis?

I am willing to try things that will help me sleep better.

zawy profile image
zawy in reply to 12stargate

Ask any good friend or two who smokes a lot of cigarettes. Especially if he/she is notably lazy and friendly, and is generally like "don't stress me out, man".

BUZZ1397 profile image
BUZZ1397 in reply to zawy

Ha Ha Ha

zawy profile image
zawy in reply to 12stargate

And you'll need these two items from Amazon:

amazon.com/Kitchen-Stainles...

amazon.com/WaterPuff-Portab...

12stargate profile image
12stargate in reply to etterus

Etterus; Am I understanding it right that you were taking 5mg of ambien 4x throughout the night??

etterus profile image
etterus in reply to 12stargate

Yes. 20mg. Approved by a sleep specialists neurologists.

12stargate profile image
12stargate in reply to etterus

Wow! That is good know. I used it last night, and I slept well.

So do you take two before you fall alseep, and on each time you wake up?

etterus profile image
etterus in reply to 12stargate

I originally started with 5/pm. One of my chief problems prior to DBS was frequent urinegency 3-4 /pm. This was so bad due to my foot dystonia... Hence the need for the ambien to sleep. I would use the least that works. You re likely to become dependent on it, but it's the same for other drugs....

12stargate profile image
12stargate in reply to etterus

I used ambien before. It worked wonders for me then. I tried it again last night, and I slept 7 1/2 h, in two shifts.

I did become dependent on it, but when I went off it, it was no big deal.

One thing I have to watch when I take ambien, is that I sleep eat. One of the wierd side affects.

I have asked my son if he sees me doing it, to gently lead me back to my bedroom:)

Hugs and love, Eva

:)

BUZZ1397 profile image
BUZZ1397 in reply to 12stargate

I won't take Ambien due to 1. increased risk of falls 2. thought disturbances 3. impulsiveness

minnietip profile image
minnietip in reply to etterus

my Parkinson doctor (neurologist) gave me large carbidopa/levodopa 50/200 to take at bed time.....and I take Benadryl....works!! takes getting use too.....but does make me feeling drugged out next day.......

12stargate profile image
12stargate

I am working on it Zawy!!

And I have also decided to not complain about lack of sleep. I want to live my life, good sleep or not. I have also decided to not worry about it.

Sleep will come and go, and I am going out to enjoy my life while it does>

:)

Hugs, and love from Eva G/

:)

grower profile image
grower

Sleepless nights does seem to be a part of getting old that no one warned me about ( my husband has PD, we both can't sleep well)

JohnPepper profile image
JohnPepper

Hi Zawy. I agree with Eva G. The less you allow the insomnia to get to you, the better you will sleep. If I can't get back to sleep, having tried deep breathing and counting backwards from 10 000 down to 1, I get up and either read a dull, but interesting book or I look at my emails and answer as many as I can. I go back to bed if it is still not normal wake-up time. I don't get annoyed or up-tight about it, it is what it is.

Good luck

John

12stargate profile image
12stargate in reply to JohnPepper

Hi John and ZAWy

Therer is an app for the smart phone called SleepCycle. It will tell you how much and how log and deep you have slept. I am using it to make sure my sleep in Good!

Love and hugs. Eva G.

:)

JohnPepper profile image
JohnPepper in reply to 12stargate

Hi Stargate. I don't want to sound facetious but what is the use of measuring the sleep you do have, when you already know that it is not enough?

John

12stargate profile image
12stargate in reply to JohnPepper

Good question John. I am doing to see how my bedtime ritual affects my sleep, and if there is anything I can do to calm myself down and thereby sleep better.

Hugs and love, Eva G.

:)

JohnPepper profile image
JohnPepper in reply to 12stargate

Hi Eva G. One of the things I learned way back in the 70's was that when I stopped getting up-tight about the loss of sleep and started to work around it, I got sleep when my body allowed me to.

I managed in those days to only sleep for 3 to 4 hours a night. I was under a lot of pressure, running my own business and having to meet deadlines.

So getting the work done and then relaxing and sleeping was the way to go.

I still only get 4 to 5 hours sleep a night, but at the age of 80 I seem to fall asleep whenever I relax and read a book or listen to music during the daytime.

Good luck.

John

12stargate profile image
12stargate in reply to JohnPepper

Hi John;

Sleep has been a problem from me way before PD. And I get very depressed if I don't get enough sleep.

So now with PD, insomnia is worse of course.

Combine that with dizziness every day, and it becomes a callenge to stay optimistic. But I insist. It is the only way to go while I look for how to cope with the different symptoms.

I appreciate your input, and will try reading dull stuff and listening to relaxing music:)

I love classical music anyway!

To the ones of you that call PD a gruesome, horrible etc. illness, I understand where you are coming from.

However, let us not make PD worse than it is by calling grotesk names.

There are conditions that are much worse than ours, i.e. ASL.

Optimism goes a long way.

Hugs and love, Eva G.

:)

JohnPepper profile image
JohnPepper in reply to 12stargate

Hi Eva G. The dizziness you speak about; is it not caused by medication?

You are correct! Negative thinking creates negative results. It becomes a self-fulfilling prophecy.

Exercise is still the best way to deal with depression and insomnia, but I guess you are tired of me telling you this?

Kind regards

John

12stargate profile image
12stargate in reply to JohnPepper

Hi John; I am sure the dizzyness is caused my meds. I wish I knew which one? Perhaphs trazedone?

You keep telling me about exercise all you can!! I need the motivation!!

I even have an app on my iPhone that is a pedometer.

Of course, 10,000 steps a day is my goal. I am heading there:)

Thanks John:)

12stargate profile image
12stargate in reply to 12stargate

John;

Is 10,000 steps a day really realistic for us 'parkies?

Isn't one hour of fast walking the goal?

I am up to 1/2 h. It is not fast yet. My goal is that by the end of May it will be, for one hour.

Right now I am really tired if I walk too much several days in a row. I need to learn to pace myself.

Love, Eva G.

:)

landman profile image
landman

I get better sleep now that I removed clock from bedroom.

12stargate profile image
12stargate in reply to landman

Hi Landman;

Thanks!! I am doing that right now!

Hugs and Love from Eva G.

:)

zawy profile image
zawy

That's funny but an important point. I've noticed the slightest light keeps me awake, and I solved years of a sleep problem with my mother by pointing out to her that the intake from her slightly loud heater/AC unit was in front of her bedroom and it was probably waking them up everytime it turned on, so they closed the door.

NanCyclist profile image
NanCyclist

I take .75mg of Clonazapam before going to bed to control my REM sleep behavior disorder. It not only keeps the bad dreams away, it gives me 7.5-9 hours of sleep each night and pretty good energy nearly all day.

12stargate profile image
12stargate in reply to NanCyclist

Thanks NanCylist :)

Trenny profile image
Trenny

I take a 10mg Phenergan tablet about half an hour before bedtime if I have had several nights of bad sleep. It is a tiny dose, but works for me.

JohnPepper profile image
JohnPepper

Hi Zawy. Yes, lack of sleep is problematic. I have suffered with this problem since 1974, when my sleeping time averaged less than 4 hours a night. It made me very anxious and that made things even worse. I was under a lot of pressure at work at that time, so I was able to immerse myself in my work and forgot about the sleeping.

I later found that if I could not get back to sleep, it was best to turn the light on and read until I became dozy again. Then I went back to sleep. I didn't just lay there tossing and turning, which is very stressful. I still only sleep for 5 to 6 hours a night and it no longer worries me.

John

Idofotos profile image
Idofotos

Ive had good luck with melatonin right before bedtime, haven't needed it recently but would give it a try, you can get it at walmart

BUZZ1397 profile image
BUZZ1397

Coincidentally I posted aboout the love I have for yeast rolls or yeasty pizza dough before bedtime. The yeast breads seem to assist me to get a quality sleep and I feel more normal, less Parkinson-ion for awhile in the mornings.

Sometimes I am still bothered by jumpy legs. When that happens I find that if I drink a small amount (only 5-7 ml) of children's formula Benadryl syrup it can resolve the jumpy leg obstacle to sleep and I have no "Benadryl head" in the morning. If I take a full dose of Benadryl (25 mg) I have increased difficulty with my memory in the mornings. But not if I keep the dose down to 5-7 ml.

Forgot to mention I invested in a special foam mattress and a contoured pillow a few years ago and they have helped so much.

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