What’s up with the absence of any Parkinson’s symptoms throughout the night?

[Mimi828]

I have my daily struggles with my Parkinson’s symptoms and the on and off periods and the precise dosing of my sinemet during the daytime hours to get me through the day but once nighttime comes around my symptoms all but disappear. I’ve had Parkinson’s for close to 25 years and I’ve have never taken any medication after 4 or 5 pm, I never felt the need to. Is this normal? Does anyone else experience this? All throughout the evening and overnight I feel like I don’t even have Parkinson’s and it’s great. I’m not complaining, it’s just weird. I can’t be the only person who has this happening to them. Maybe it’s the fact that the dopamine levels are higher then, I don’t know. Thanks

[Smittybear7]

My last dose of c/l is at 5:30. (25-100)at 6am 10am 2 pm and 5:30. I’m good until about 9 or 10 .pm.Then I have some off time for about an hour. Very peaceful from 12to6 but don’t sleep well. Average 3to4 hours a night. Trying to stay hydrated so I am up every 2 to 3 hours.-going to the bathroom.I’m interested in hearing what others have to say .

[NewtoPD24]

I was only diagnosed in June of 2024, and my symptoms are mild. I am on Sinamet 3 x's/day. I also never take it after 5 pm and I have no symptoms through the night or even when I wake.

[pdpatient]

Me too. I experience the same thing and I am 12 years in. Except that I take Gocovori and Nourianz as well in addition to Carbidopa /Levodopa. I do experience peak dose dyskinesia and dystonia.

I think it's due to the stacking or accumulation of residual Levodopa in the system. In addition, sleep induces dopamine production which accumulates through the night, that is if you are lucky enough to have 6 to 8 hours of good quality sleep.

Above-mentioned phenomena is what my MDS postulates. What do I really think? Parkinson's is not yet fully understood and I don't believe that any two patients will exhibit or experience the same set of symptoms, both motor and non motor.

[MarionP in reply to pdpatient]

Sleep also involves body paralysis, as a natural phenomenon. Yours may still be somewhat preserved.

[alaynedellow]

I am the same. Take my last dose of long-acting Madoparat 5 pm. I go to bed and I sleep for a good eight hours. I assumed it was just that I had enough.Dopamine to last the night.

[pdpatient in reply to alaynedellow]

There is such a thing called the "sleep benefit". 8 hours of sleep gets you into normal dopamine levels in the morning and lasts for hours.

[Mariannemarg]

Wonderful! Thanks for sharing, I have the same in mornings, during the night my dopaminelevel seems to restore again. But 25 years (in your case, me only 5), wauw!

[Gcf51]

B1 Therapy will help you get more sleep.

Same here. For me it will be time for my next dose before symptom start reappearing.

Consider yourself lucky there are those that take an extended release before bed.

[LorenzaS]

I always say it’s a 9 to 5 disease because in the evenings I am free of symptoms as well as in the early mornings. I start to believe the sun as some effect on me 😂

[Josiedub]

same here as well at nighttime no levodopa i do use rotigotine plasters though ( neupro) sleep is very bad though. I am nearly 11 years ago diagnosed

[gigiwillms]

oh, man! I wish! I take c/l and mucuna. I’m about 12 years in and 3-4 nights a week I wake up after about 4-5 hours and have to take another dose of c/l just to be able to get back to sleep. (After waiting an hour for it to kick in)

[Canddy]

I think it is weird too - I basically have Parkinson's from about 7 AM to 7 PM (last C/L dose at 4 PM and first dose in the AM at 7). I am 7.5 years in and take C/L 3 x per day.

[popo1]

great question. 4yrs in and i've wondered the same. taking rytary, 20/95?, @ ~8,3,9 o'clock. and sleep about 5-7 good hours. when i wake up i usually don't feel the need for rytary but have decided to take it anyway; otherwise an 'off' will creep up on me and my timing for other doses gets out of whack.

i also experience the stacking/accumulation of dopamine/rytary mentioned by pdpatient and often take 3/4 - a whole day off to let it get used up.. normally with little-no ill effect.

how do i know when to take a day off? i experince a lot of dyskenesia/dystonia and feel 'off' even when dosed up.

i like this forum a lot. thanks for participating everyone.

[Pdotg in reply to popo1]

Do you ever take more than a day off? I am experimenting - one week off at the moment - but am slightly concerned as I've not had any medical advice about time off.

[popo1 in reply to Pdotg]

i have but not recently. i've become more and more sensitive to what my body is saying and follow those cues; i.e. yesterday took only one dose, about mid-morning, and felt good all day. so far today, nothing but...it's still early.

[Debgiffen in reply to Pdotg]

I was wondering how you were doing with your week off from meds? Does it get easier each day or more difficult?

[Debgiffen in reply to popo1]

On days when I have no commitments and no need to leave the house, I will go a whole day without medication. And those days are the best! No worries about timing meds or limiting protein. I’m usually highly energized and get so much done. A few years back I went 2 days without medication and was barely able to move by the end of day 2 so I haven’t tried more than 1 day off since. There does seem to be a cumulative effect from C/L even though I take such a small amount of less than 1 Sinemet per day plus Mucuna.

Diagnosed 10 years ago.

[popo1 in reply to Debgiffen]

how much macuna do you take?

[Debgiffen in reply to popo1]

I take 2 NOW brand DopaMucuna capsules with 1/4 Sinemet 25/100.

Or sometimes I take 1 NOW DopaMucuna capsule with 1/2 Sinemet 25/100.

Either combination gives me a dosage equal to 1 Sinemet.

[gomelgo]

I had the same for nearly 3 years now. But lately I have noticed that I wake with the sun, and my tremors do too. I only take mucuna and only when needed, which is pretty much daily. And I take CBD oil, which helps. I have noticed that if I take melatonin the night before, it seems to help as well. My theory about the nighttime is that the serotonin levels have more to do with it than the dopamine levels do. Wonde what chartist may have to say here.

[Parkie123 in reply to gomelgo]

My personal experience with fewer tremors in the evening led me to investigate hormonal fluctuations as a factor. I discovered that my daily fluctuations in tremors tend to correspond to the normal daily cortisol cycle (higher in the morning and lower in the evening). Given that cortisol is a stress hormone, this would be a plausible explanation.

This is also consistent with my experience of more significant tremors during exercise with a reduction in tremors a couple hours after, as this corresponds with the impact of exercise on cortisol.

[chartist in reply to gomelgo]

During the night is when the pineal gland begins releasing melatonin which peaks around one to two during the night. Exposure to earlier morning sun light helps maintain the sleep/wake cycle/circadian rhythm as well as other circadian rhythms in the human body. It also increases serotonin production which is a precursor of melatonin. Earlier morning sun exposure and later afternoon sun exposure also increases exposure to various infrared light ranges which is also known to increase melatonin production in the mitochondria and offer beneficial health effects in humans.

It is very likely a mistake to spend more time indoors and less time outdoors as we age. In PD in particular, at least two studies have shown that people who spend time outdoors are less likely to get PD as discussed here :

bmcneurol.biomedcentral.com...

And here :

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

Here is a relevant quote from the link :

' Our findings suggest that men working outdoors have a lower risk for Parkinson’s disease. Further studies of measured vitamin D levels in outdoor workers are warranted to clarify a potential inverse association between vitamin D and the risk for Parkinson’s disease. '

It is worth mentioning that the second study was done in 2010 when it probably was not yet known that sunlight increased melatonin production in the mitochondria. Thus increased production of vitamin D alone may not have been the only reason for reduced PD risk.

Add to that that melatonin production declines with age and declines even more in people who have PD and you can start to get an idea of why melatonin is likely useful in people who have PD. This age related decline of melatonin tends to correlate with the increase of age related diseases, of which PD is just one of the age related diseases.

In the following link I wrote about how people with PD have blunted melatonin levels :

healthunlocked.com/cure-par...

Previously I have written about how melatonin supplementation in human studies, has shown significant benefit in people with PD here :

healthunlocked.com/cure-par...

And here :

healthunlocked.com/cure-par...

In the following, I wrote about the correlation between melatonin and age related diseases, of which, PD is one :

healthunlocked.com/cure-par...

Imo the following list of four is likely to be useful to help maintain multiple circadian rhythms of the human body as well as offer therapeutic levels of melatonin while protecting the mitochondria and major organs of the body based on many relevant studies through multiple methods of action : oral melatonin, topical melatonin lotion, earlier morning sun exposure and later afternoon sun exposure are likely to work in unison to help promote human health and delay disease progression of multiple types, including PD. It is also my belief that the earlier these four are initiated in the disease process, the more effective they are likely to be.

Art

[SpringSong2]

Hi, my first post here, I enjoy the info of the community. Although I wake several times for the toilet overnight my partner and I notice that from about 6.30-7pm then the rest of the evening I turn back to the relaxed, happy, 'normal' version of myself - if I'm at home, just me, partner and our cats with nothing stressful going on. Not complaining😊 just hadn't heard of anyone else experiencing it.

[Debgiffen]

I usually only take Sinemet/mucuna in the morning. Last dose is around 12:00. Around 4:00 I get some dyskinesia then around 5:00 I have an hour of extreme fatigue but after that I feel good. I’m still a bit stiff but my body is relaxed and I’m motivated to get projects done. For me, this is the best part of the day!

My only problem with this method is that I get a lot of leg pain/cramps at night which I believe are caused by low dopamine levels. I drink electrolytes every day and get plenty of magnesium and potassium from my plant based diet +supplements so that’s why I’m assuming it’s from low dopamine. And it’s on my PD afflicted side.

I was diagnosed 10 years ago.

[coffeewithcream in reply to Debgiffen]

I'm not on any meds but I do take 500mg of taurine at bedtime that helps with leg cramps.

[gomelgo in reply to coffeewithcream]

How long since you've known you have PD?

[coffeewithcream in reply to gomelgo]

I was diagnosed in December 2018.

[gomelgo in reply to Debgiffen]

So after 10 years, you still only have one side affected?

[Waxbeans]

I am the same but have reasoned it out by thinking that you do not require balance, tempo, task and vision are absent when sleeping along with many more we are not aware of yet. I guess we should be grateful for the break! I am currently looking at another possibility for my ongoing and deteriorating symptoms that mirrors PD. That would be NPH a recent MRI hinted that I’ll need more evidence or endorsement before I pursue that path. We are all dreaming of a fix🙏