Help Staying Asleep!!: I have Parkinson’s... - Cure Parkinson's

Cure Parkinson's

25,522 members26,843 posts

Help Staying Asleep!!

Kevinbg profile image
27 Replies

I have Parkinson’s and I’m 59. Had it for awhile I guess. I go to bed around 10:00 pm and wake up around 2:00 am. I lay alone on the sofa until morning.

I want to sleep so desperately. Falling asleep is easy. Staying asleep is impossible.

I’ve tried everything natural there is on the market. I take a few medications that are supposed to help with sleep. Mirapex. Atarax. But, I always wake up.

CBN helps a lot, but I have to 3x or 4x the dose. It has no side effects because it’s hemp.

Any suggestions? I’m not yet on treatment.

Written by
Kevinbg profile image
Kevinbg
To view profiles and participate in discussions please or .
Read more about...
27 Replies
rescuema profile image
rescuema

Serotonin is needed to maintain sleep, on top of melatonin that helps you to fall asleep.

As you progress with PD, it can lead to serotonin shortage.

Have you looked into glycine and 5-HTP (helps with serotonin)?

For some magnesium l-threonate can help tremendously, especially if you're Mg deficient as in many.

Daily exercise is another helper, for sure.

ElliotGreen profile image
ElliotGreen in reply to rescuema

Standard warning: 5-HTP sometimes leads to adverse effects when combined with carbidopa.

rescuema profile image
rescuema in reply to ElliotGreen

Could you elaborate on your "Standard warning?"

5-HTP is often advised especially in combination with l-dopa/Mucuna because it suppresses the neurotoxic effect and levodopa induced dyskinesia at a proper dosage without irreversibly depleting b6 (too much over balance could suppress dopamine since they're both catalyzed by AAAD enzyme), and while caution is warranted, some nautropath use carbidopa & 5-HTP to help with depression.

onlinelibrary.wiley.com/doi...

michaeljfox.org/grant/5-hyd...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ElliotGreen profile image
ElliotGreen in reply to rescuema

I shouldn't have been so categorically dismissive. I'm not really an expert on this issue. I edited my comment above.

From Wikipedia: en.wikipedia.org/wiki/5-Hyd...

1) "When combined with carbidopa (as a treatment for symptoms of Parkinson's disease), 5-HTP causes nausea and vomiting; however this can be alleviated via administration of granisetron."

2) "As mentioned below under pharmacology, cases of scleroderma-like illness have been reported in patients using carbidopa and 5-HTP."

3) "Co-administration of a decarboxylase inhibitor (e.g. carbidopa, benserazide) doubles the half-life of 5-HTP, to 3-4h, and enhances exposure several fold, depending on the dosing regimen."

The last point may not be a problem in itself, because the downside of 5-HTP generally is its short half-life. However, if you are taking it with carbidopa, you probably want to adjust your dosage downward from what you would otherwise expect.

You are correct that the problematic issue may be more with 5-HTP's interactions with carbidopa rather than levodopa, and that 5-HTP can work to reduce levodopa caused nausea, and thus work as a replacement for carbidopa.

Some claim that Parkinson's disease itself depletes serotonin, so I suppose the idea of supplementing 5-HTP is at least reasonable. So maybe I was overreacting. I just know that some people have had issues with it, and it does have some potential negative side effects, so care is warranted. But maybe it works for some people.

rescuema profile image
rescuema in reply to ElliotGreen

I'm glad you've clarified your position because it seemed you were forcefully stating they shouldn't be combined with a well known drug interactions that I wasn't aware of. Any with anything, occasional side effects are observed and careful dosage must be utilized since we're dealing with competing NT chemicals that can tip the balance in the wrong way, just the same as in certain nutrients.

I don't believe we can state combining 5-HTP and carbidopa must be avoided outright, although I would be very careful with PD since it may easily tip the balance to depress dopamine with l-dopa if not starting with a small dosage. The combo therapy is utilized by nautropaths for depression as mentioned above and for even weight loss.

ncbi.nlm.nih.gov/pmc/articl...

ElliotGreen profile image
ElliotGreen in reply to rescuema

Thank you for "peer-reviewing" my comment. :-)

Oceanflow profile image
Oceanflow in reply to ElliotGreen

I took 5-HTP (just one ) and got really dizzy and nauseous . Perhaps it was my Sinemet interacting with it. Your warning is a good one!

rescuema profile image
rescuema in reply to Oceanflow

What was the dosage you took? 25mg or higher?

dadcor profile image
dadcor

I would try melatonin sublingual, gradually increasing the dose till I find mine..

ElliotGreen profile image
ElliotGreen in reply to dadcor

Melatonin helps me. I would increase the dosage slowly, as dadcor suggests.

Last summer, when I was in Seattle, I tried my friend's sleepy time cannabis oil. With that, and melatonin, I slept eight hours straight for the first time in years. And I did so on successive nights.

I'm back to having problems, but the combination of melatonin and cannabis oil (not just CBD, but something with THC in it, too) still helps me sleep better.

When I wake up in the middle of the night, I take a little bit more melatonin. I usually have a good second sleep.

Recently, I'm averaging six hours a night, but it's better than it could be.

park_bear profile image
park_bear

I have a similar sleep pattern. When I awaken at 2 AM or thereabouts, I meditate (abide in Divine Bliss actually) with no intent of falling asleep - and usually end up up sleeping for another hour or two in the process.

About my meditation: healthunlocked.com/parkinso...

chartist profile image
chartist

Kevinbg,

You may find this useful for your problem :

healthunlocked.com/parkinso...

If you decide to try it, please come back and let us know how it works for the purpose! I use it myself and find it very effective!

You may also find this helpful :

healthunlocked.com/parkinso...

Art

LAJ12345 profile image
LAJ12345

Do you take naps in the day? Try to limit these. And exercise each day until you are physically tired preferably in the early morning light. Stop looking at screens early in the evening and turn down lights after the sun goes down.

Read Reset your inner clock by Michael Terman.

jeffmayer profile image
jeffmayer

Have u tried kalms night

MarionP profile image
MarionP

Talk to a neurologist or psychiatrist. Clonazepam is very friendly and virtually benign, and at the end you will feel rested, not just having slept, but having had the benefit of slow wave sleep, which is really what you are after. Keeping the dose within normal limits, e.g., 0.25 or 0.5, HS, try the lower dose first. Excellent sleep aid in low doses, e.g., 0.25 to 0.5 mg HS. Give yourself time to wake up properly in the morning, cup of coffee or tea. Not worrying about it is very helpful as well, a sort of placebo effect, add this patience with yourself, taking your sweet time upon awakening, add that to the medication I mentioned and you may find out you can feel just fine.

I like rescuema's ideas too.

pmmargo profile image
pmmargo

I'm on Mirapex as well as Rasagiline. Perhaps you need to increase your dose a bit

(ask if you can bump it up by 0.375 mg) and see if that helps. I wake up a lot to pee. Perhaps that is also your issue. I am happy with not a lot of sleep so I think I get enough with napping. Best wishes for restful sleep and wonderful dreams. P

AaronS profile image
AaronS

Along the lines of meditation... I have to contiously relax my body to allow my brain to relax, I slow down the tremors my body is giving and somehow my stiffness in my shoulder relaxes as well.

I have tried moving my gym time to arvo's instead of first thing. And I take magnesium to assist with relaxing the muscles at night.

It's not easy to do but once you learn to shut your brain off at night your quality of sleep improves. It does sound like crap but it works for me

rideabike profile image
rideabike

It's very common Kevin and much of the PD literature mentions the fall asleep but not stay asleep issue. I tried natural stuff until I found a combo that works. It sounds like a lot to swallow but is only 4 pills, melatonin being a tiny one and powdered taurine...if swallowing pills isn't your thing.

If I still wake up for any reason, 200 mg magnesium sits by the bed with water. and being the biggest capsule I prefer taking it alone. This is what works for me ...5 mg melatonin, (225 mg L-theanine, 220 mg L-tryptophan, 500 mg taurine ...1/8th tsp, 100 mg 5-HTP)....(amino acids in brackets). Really does work and I rarely have a sleepless night. You can order most online at a better price. I've been doing this combo for 8 months or more with success.

Anxiety is a different issue that messes up the brain waves and undoes the calm. Just seems to build up and I sometimes have to address that separately. Take care and hope you find a solution to sleep well....😪

rescuema profile image
rescuema in reply to rideabike

I would like to recommend people start with a lower dosage of 5-HTP, although this varies greatly between individuals. 25mg (1/4 of the typical 100mg pill) may be a better starting point, and move up slowly carefully keeping in mind that dopamine may get suppressed through competitive inhibition. In addition, PWP tend to be deficient in B6, but b6 is required to convert 5-HTP to serotonin, so supplementing p5p (active b6, sublingual ideal) is recommended if deficiency is at all suspected.

rideabike profile image
rideabike in reply to rescuema

Thanks so much for the advice as I didn't know that about 5HTP.

rescuema profile image
rescuema in reply to rideabike

You're welcome.

In addition, your l-tryptophan supplementation is a precursor of serotonin, so you were definitely boosting serotonin with your various supplements, apparently without ill effects but very sound sleep. :)

It might be worth balancing off l-tryptophan with l-tyrosine (dopamine precursor, but must be separated from l-dopa for absorption, which depletes l-tyrosine), just as l-dopa may be better paired with 5-HTP to prevent serotonin depletion. Finding a delicate and proper balance could be tricky, so less is more to avoid tipping the balance.

The below link has a nice summary that might be worth your time.

medicalnewstoday.com/articl...

alexask profile image
alexask

I find listening to a meditation app helps. It's called insight timer, and I find some of the yoga nidra for sleep recordings helpful.

ryzlot profile image
ryzlot

THC / CBD 1:1 works well for me. 1ml before bed

JR

keepsie profile image
keepsie

I have the same issue. I am up at 2am every night. I take 2 caps of Mucuna and go to sleep again. Try this.

gginto profile image
gginto

I think good cardio and weight training helps.. My wife doesn't have PD but is out cold all night with cannabis cookies..maybe I'll try them soon...

Patman60 profile image
Patman60

I would try cannabis indica variety. Other things I do that’s helpful are sauna and a cool pad for your bed chilitechnology.com

Until you experience it you don’t really realize how stressful lack of sleeping can be. Good luck and Sweet dreams

Cons10s profile image
Cons10s

Download Dr. Joe Dispenza meditations on your phone, it takes my brain to a total place of relaxation and ultimately back to a restful sleep. They’re about 45-1 hour long. Wear an lightweight comfortable eye mask.

You may also like...

falling asleep while walking - need suggestions

My mother falls asleep while she is walking. She has Parkinson’s but not on any medications for...

Why does my tremor vanish when I'm falling asleep?

me why theres a certain point just before I fall asleep that my body is completely still and feels...

Staying up later than usual

the inbetween times. He's tired enough to go to bed about 8.45/9pm, and takes a slow release...

Help need sleep advice

melatonin he takes between 5-10 mg He can sleep a lot goes to bed at 9pm doesn’t get up till...

Brother in law with Parkinson’s disease need help for him and my sister

happen at night but he said he was asleep so my sister has been sleeping in a chair in the living...