Just wondering if there's anyone out there with PD that can't sleep? I wake up to go to bathroom or something wakes me and once I'm up I start shaking , the I can't fall back asleep- Sleep deprivation is brutal - tried melatonin, sleeping pills , nothing helps- part of the problem is depression, maybe ? I notice I tend to get sad at night-
Parkinson's & sleep: Just wondering if... - Cure Parkinson's
Parkinson's & sleep
Written by
Joy-love-magic
To view profiles and participate in discussions please or .
Read more about...
40 Replies
•
I’m so sorry, I know what you’re going thru. I’ve had insomnia for for a very long time. Yes, I’m up a lot during the night. I’ve tried all kinds of sleeping aids but nothing worked. I finally talked with my neurologist and his outlook is, that with PD no sleep is definitely not good. He put me on a low dose of SEROQUEL, it didn’t do anything, finally last week he put me on the right dosage and I’m sleeping 7pm-7am
I’m also in a deep depression, but with getting my sleep that hopefully will change. Please hang in there!
I was on seroquel but got off it about 8 months ago because it made me gain so much weight- thanks for reminding me of that . I didn't have this insomnia when on it - I could sleep all night , I don't know what they even gave it to me for cause at time I was on so many anti depressants but maybe it was sleep - I quit all my meds agents docs orders , except Parkinson's meds - I've lost 30 pounds -thank you so much, I know it sounds crazy but completely did not connect the dots . At least if it gets that bad there is something out there -Let me know how ur doing ?
How did you lose 30#
I started Parkinson's medicine and so I could walk again and get exercise. Then I stopped eating sugar,bad carbs ,cheese, the doctor said I was about to get diabetes, I quit taking all my antidepressants which I would not suggest anybody do, it was against doctors orders- I had to lose some weight do to really bad sciatica in my back so the extra weight was making it really painful and I'm really close to getting diabetes and I don't need another disease I actually have to get my blood tested soon. I actually lost 40 pounds but I went to Disney World for 10 days and ate really bad there and since home I haven't gotten back to routine and I gained 10 pounds back . So hard to get off and so easy to gain
Yes, when diagnosed I was the heaviest I’ve ever been.. Dr wanted me to lose 35-40#. I had never been active before, but started walking and got my husband to do it with our dog. Dr wanted me up to 3-4 mi aday, but only made 3, because of falling issues and a hurt ankle. I did get one of those strollers which had a seat and compartment. Best investment ever. We also have fitbits and do compete every day.. 😜
I’ve lost 22# but now unable to walk much and at a plateau. I’m in Horse Therapy and physical therapy.. something almost every day
Are used to ride horses but I couldn't anymore due to the Parkinson's but now that I am on medication I can again, I've been writing a little but I'm still kind of gun shy, I'm not the same writer are used to be and a lot of my problems on you go are used to ride horses but I couldn't anymore due to the Parkinson's but now that I am on medication I can again, I've been writing a little but I'm still kind of gun shy, I'm not the same rider and 75. Percent of my problem is my ego
I have the same problem....
I live inCanada and they have a drug called zopiclone(7.5 mg).I have taken this drug and it allows me to sleep.try it and let me know.
If ur ever depressed and need to talk ..... I understand depression !!! Except when I'm in the middle of it , ha
I too have extreme difficulty sleeping. I'm going to try nortriptyline. Humans have four levels of metabolizing nortriptyline. "These metabolizer types include poor, intermediate, extensive, and ultrarapid metabolizers." I'm arranging to have analysis of my CYP2D6 alleles. Nortriptyline is also prescribed for anxiety and depression.
en.wikipedia.org/wiki/Nortr...
webmd.com/drugs/2/drug-1071...
Wow, never heard of that? Let me know how it works ? I hate that I have to take so many pills a day !
I take 80 mg melatonin at night. It helps a little. When I was in my 20's I would be groggy half the next day if I took 2 mg. Definitely something different in the old brain. Marijuana and trazadone help, but like melatonin, they also seem to wear off in 4 hours. But the combination gives a deeper sleep.
That's what I'm using to melatonin and trazodone but just like you and only last for a few hours
I buy my husband the timed release melatonin and it helps him sleep longer than 4 hours. You can buy it at GNC. He also takes extended release Sinamet at night.
Thx - I just asked doc if they had time released melitonion and he said didn't so I'm excited to try
I eat half an onion every night , avoid liquids few hours before going to bed, think positive or just clear my mind (I think about nothing - I know the taughts keep coming but just keep erasing them through meditation/concentration or just count to 1000 but never reach that target). But for me the onion is the best medication and helps me to have nice dreams, mostly color dreams.
When I realized I have PD (before even seeing a doctor) I was very depressed; I saw 5 neurologists but only the last two (specialized in motion disorders) confirmed my supposition. Now, I had to accept the situation and try to live my life. I postponed the medication. If I'm fully relaxed and have a good sleep even I forget I have PD. And I have a very stressful job but I make efforts to control the stress. Before I liked to confront people but now I avoid it as much as I can.
Ur not on any meds for pd - I held out for about three years but it got so bad it was kind of a quality-of-life thing but I'm still not sure I made the right choice because I do have dyskinesia now , I also know that I become immune to medications- you're the first person that I've heard of that didnt I mediately get on meds that actually I've never really talk to that many people with Parkinson's because I've been in denial but it's been awesome being on this website and hereing all of you
I do the same thing and it helps with the shaking but I still can't sleep, I keep saying no one has ever died from lack of sleep but sure can drive you crazy
Not married you say?
Hello. This type of thing happens to me all the time. When my A sinemet runs out in the middle of the night I wake up with a frozen or paralyzed sensation. I cant go back to sleep until I take another dose and it kicks in. This is anywhere from 45-90 minutes.
I've accepted that this will happen and know it is best to wait it it out in bed. I meditate and pray until it does and then I can continue sleeping..
Thank u for reminding me that I always have prayer & meditation. Even if I don't sleep , meditation will keep me rested, grounded & in the now -
Hi,
I am the same way I don't sleep a lot .I have to be totally comfortable to fall asleep !
Thanks Don
well i was like that joy i said flock it to my self im going to do some thing so i booked into an hospital in china for stem cell treatment i have been home nearly 3 weeks now im sleeping better now and when i wake up im not shaking as much now im still exercising every day as it takes time for the cells to do its job.it is expensive but i can still afford it was good i had the money.hope u can find something to help you.
I would NOT trust the Chinese doctors but anyhow, from who they got the cells and where they were inserted? Into the brain? No possibility of rejection?
China is full of scams but I may be wrong so let us know how the things go for you.
hi ion well there were people from all over the world there and sometimes you have to take chances as with pd the pills we take are not very good.if i got something like that done in the u,s.a i would be looking at 100.000 dollars for the same thing,and no your brain does not get injected with it. the bottom of the spine does and every day you are on a drip for 2 weeks,as for stem cells,i never asked as i dont really care were they come from.if it helps me with my p.d its ok by me.
Hi
Joy-love-magic
I am so sorry, I too know how distressing it is not to be able to sustain sleep. I fall asleep and then I am awake one hour later, this is repeated throughout the night and I am awake at 5.00 am, the days are so long.
During the night I feel so lonely, my tremor kicks off, I have an array of pillows, squeezee ball. I have R.E.M. sleep disorder when I swear, something I would never have done before PD. Anxiety can take hold during the night when you are alone.
I have tried Melatonin which does not work, I have been prescribed Zopiclone which I have only taken a few times, I will let you know if it helps.
It would be a blessed relief to get 8 hours sleep to have a real break from my symptoms. I will think of you in the wee hours. Take care.
Lovepug
Motherfather• in reply to
try entrip 25 mg lovepug..1 before bed it will give you a good sleep.ok
About 9 months ago I started going to a Rock Steady Boxing class specifically for Parkinson’s patients. It has transformed my life!!! We have so much fun and laugh so hard and exercise so hard that 30 years of back problems, stamina problems, and depression have pretty much become non-issues. Also 5 years after losing my sense of smell it is coming back, because of new neural pathways being formed. Try it!!! Good things can be ahead for you! 🦋
Where are you located?I'm looking for a Rock Steady Boxing venue.
I attend Rock Steady Boxing at the YMCA in Shrewsbury, PA. The coaches are incredible and the boxers are feisty, funny, and courageous. We get an amazing workout but have so much fun doing it that this lifelong sedentary person feels truly sad when she has to miss a class.
If you look up Rock Steady Boxing on your browser, you can get more information. There’s also a place on the website where you can type in your location and find a nearby class.
If you are anywhere near Shrewsbury, PA, come join us!!! We would love to fight Parkinson’s alongside you, and share in some of the joy, laughter, and hope that we have found! 🥊😊🦋
Hi joy-love-magic. I'm sorry to hear about your insomnia. I don't really suffer much with insomnia at the moment, but do have some experience with some of the things mentioned in this thread so thought i'd chime in. For background, I've suffered from depression for a long time and was just recently diagnosed with Parkinson's. I tried nortriptyline very briefly, and it caused me huge coughing fits and I had to get off. I understand that it one of it's biggest side effects. One med I started taking due to shingles but kept taking because I feel much more rested when I take it is gabapentin. My psych had no problem continuing the prescription, and even encourages me to keep taking it. I'm not sure it is a sleep aid, but if you can get to sleep, I believe it helps maintain REM rhythm. Now, to getting to sleep: the only thing I found that worked is a mindfulness sound track. My psych recommended Belleruth Naparstek. At first, it felt very hokie, but gradually I realized it had almost a hypnotizing effect. I found I could listen to one or two of her soundtracks when I was awake at night. They last 15-20 minutes apiece, and I could then fall asleep pretty quickly. Once I fell asleep, it was a pretty restful sleep, as well. Eventually, I could "hear" the background music in my head, without even playing the soundtrack, and could fall asleep on my own. Good luck! If you actually want to know more about ol' Belleruth, let me know and I can direct you to the specific ones that worked for me. Good luck!!
I have the identical problems. I found that a half a pill of Xanax will put me back to sleep in about 30 minutes. However the early am depression is brutal! I use the Xanax at other times during the day if I have to do meetings and presentations, but that’s not enough anymore. I’m having to retire after fighting that for a year. There is progression to this disease that unfortunately can’t be stopped. Take care. I wish you the best.
Yes when I first got Parkinson's, I was afraid to take the medication. A friend of mine gave me a Xanax to help me with the shaking &it worked- Long story short I started doing them all the time and at first it help me a lot but then in the long run it made it worse. Now I can't take it anymore , the doctors won't give me because I got a habit, I sure wish I could 😩just when I've gone 36 hours no sleep and insane but I guess it's not worth the risk of starting to do all the time again
I have the same problem.what I found effective
Is 7.5 mg pills calledpl in Canada Zoplicone(Imovaiena).What is wrong with it is the car accident I had which is normal for Zoplicone
I'm not doing good this week-
feeling fearful & lonely -
Parkinson's makes me feel like I'm on a island alone -
I'm depressed and logically know that this is depression but when in the middle of it i can't see the light at end of tunnel-
I know what cheers me up but when I get like this I feed into the negativity, play sad music etc.
i'm also feeling jealous of Friends and family, they talk about their problems and i feel like saying "you have your fucking health !"
I know that's not fair of me because healthy people can still have problems too -
I don't want to be self-centered and just think about me but I wish I had there problems-
I don't know if any of this makes sense just spewing out my negativity into the world sorry
On top of it all I'm still not sleeping
Hi Joy Love. I like your name. I haven't read any replays here but I wanted to say that I'll say a prayer for you to find some happiness. You are not alone, although I know it feels like it. I was diagnosed 2 yrs ago. Ill be 38 in a month. I have the most wonderful and supportive husband and 2 young children... I don't really even feel bad, but I know how alone inside you feel even with the supportive environment that I have. Everyone is different, but when I feel depressed, I really focus on exercise and I actually will do a juice cleanse for a day or 2 or 3. It really helps. Maybe you can try?
Not what you're looking for?
You may also like...
Sleep
Does anyone get so tired and drained that by 7 or 8 pm you go to bed and go right to sleep. Then,...
Improving sleep / Parkinson's
Anyone who struggles to sleep well knows how sleep matters to our health - mental and physical....
Association of sleep apnea and Parkinson's ?
Recently I was diagnosed with sleep apnea and while looking up if there is any connection between...
Sleep Aids
I am wondering what supplements everyone takes. I have been taking 6 mg of melatonin but if I get...
Parkinson's Blues
Hi everyone,
1:36 am , can't sleep. Have the need to vent. Hope you don't mind, where else can...
Sleep
Help with sleep 
Sleep supplement?
No sleep!
No sleep
