24 hours
 

I am up a bit at night to hit the john and have been that way for a long time. As a result, I have had ample opportunity to sample my abilities at various times of the night and notice a definite pattern and I would like to know if anyone else fits this profile too.

I have a well defined decrease in function (seemingly indifferent to meds) starting around 10:00 PM and lasting until about 4:00 AM the next morning. The difference between 4 AM and 5 AM is almost startling.

Can anyone else relate to that?

somewhere in a distant and not necessarily scientific part of my past i read that many of the major 'wake up and get ready for the day' body/brain mechanisms begin going to work at around 4 a.m. and the obverse is that these same mechanisms often bottom out 12 hours later at around 4 p.m. thus the time most favored for tea (or for naps). it's certainly been my experience.

jon

interesting about the 4pm thing...
 

I've never noticed my night patterns much. But the 4 pm down time is right on the money. I've tried to change my eating habits, my med schedules and anything else, but I almost always have some down time between 4-6pm.

Who knew???

a 10-20 min nap does amazing things for me, but any longer and I slow down too much and then I have a stall and it can take 2 or more hours to get my act back on the road.

yes..
 

It makes attending daytime appointments very difficult. This is one of the "PD THINGS" that has a profound affect on our ability to "FUNCTION" :normally".

connections
 

When the "senior members" of the forum who began 10 years ago first got going strong....we retired at 4 a.m.

I continued the habit of staying up all night and finally crashing at 4 am for a number of years. That seemed to be the wind down time for my body chemistry -same time, just reversed in nature - for some hard working years- not missing even a few beats retiring from teaching and beginning a whole new "occupation"... in PD.... and it continues to exist with my just venturing as far can i get before i have to retire this rewarding "self-made cyber advocate for PD" thing -the person I turned into.

Do you remember when John Lester encouraged multiple user names in Brain talk? He always felt that it had positive uses. But there were many reasons that it wasn't for everyone to try. There are those here today who could still fess up about who else they were back in those days. It was a thrill seeking and skill requiring chance to take.

Toadie always used to write tactfully but directly - that a person could easily be identified just by the writing style....lol...but there were those who were good at it.

. Every close advocate friend I have is feeling electricity in the air about changes affecting everything.. as is everyone concerning the issues that affect them personally.

We need priority seeking analysis everywhere starting now about the election issues. Forget the name, color, age, party sex, and just grill them both hard. Lay down your arms....Nancy Pelosi stomping her feet so to speak claiming she was saving the planet is unnecessary drama and I can't suppress a giggle....does anyone have a similar reaction? Just make them both accountable for the competencies they claim. They know very well that scandals take attention away from the issues that no one can project accurately because half the world wants to wipe out the other half.

uh oh i have to stop..

THanks for any ideas or best of all thoughts about this way of thinking and approach to the elections.

GRC could start up as election coverage if we went into high gear. Another thought that may or may not have more matter headed it's way to activate the idea.

this is the time....it's always a personal call....and i'm just keeping you informed about what i find out...hope many do the same from their background knowledge.

sigh....not quite yet...still work to do...so perhaps a little should be done everyday. Looking at thread title and wrapping with:

uh, and therefore, I think 4 a.m. is ...common.

paula

Note the time I'm reading this.

I've been going to sleep at 4 am for a long time. I've tried to adjust my schedule on the weekends hoping to carry it over into the week and I always fail.

Although my gait is poor at night, I work best in the late afternoon and evening.

I usually get home from work at 12:45 am and get to sleep around 4 am, sometimes earlier when I've had a rough day.

It's good that my work hours are flexible!

~Zucchini

I haven't had a decent night's sleep in months. I go to bed around 11pm - 12:30 and wake up at 3 - 3:30am every day usually due to twitching legs or cramps in my arms and feet. I noticed that when I have stayed up late, like when doing homework, I'll be really stiff and sore through my arms, hips, and legs when I'm going to bed around this time. This is even after taking the CR at 11 or 11:30 so this makes me wonder how effective my Dopamine replacement is now.

The disturbed sleep along with the poor sleep is killing my physically as well as mentally. I find I'm losing my short-term memory, I'm also becoming pretty grumpy and irritable, and the overall fatigue never goes away.

John

Yeah, I seem to often wake around 4 am and have trouble getting back to sleep. Have been disciplining myself with breathing and meditation past that point though. But the 3pm to 6pm slot daily - oh my, that sure is ruff. Ever since I got the permanent acupuncture implants in the beginning of June, my on times are pretty dandy, but that 3-6 time I go through this hell of depression, anhedonia, crushing off-ness....it's been really weird. I feel like as my brain is being stimulated by these new trigger points in my ears on a regular basis, and is starting to regenerate somehow, I go through this period of renavigating my relationship to synthetic dopamine daily. It's very bizarre.

clocks
 

This is important stuff. Sleep disturbance can drive you bonkers. In the extreme, say meth addiction, you end up having conversations with the wallpaper and similar hallucinations. I am blessed in that I sleep pretty well but I don't know how long I can count on that.

Two things worth looking at are melatonin and light therapy. Medline has a lot of info.

BTW, the reason I raised the question was that I ran across the fact that cytokines (like from Ron's infected tooth) are produced at different levels at different times of the day. They peak in the 10 PM to 4 AM slot which is precisely when I am at my worst. Light therapy purportedly can reset the clock which seems to drift off for PWP.

3-6 pm is a good time of day for me, and it has to be -that is when I teach guitar. I usually teach till 8, but by then I am getting tired. I take a nap every day after lunch for an hour, and that allows me to teach when I do.

I go to bed around 10 or 11 pm and frequently wake up around 3 or 4 am, but so does my sister and she blames it on menopause. So I don't know if my sleep disturbances are from PD or menopause. Since both PD and menopause cause sleep disturbances and I am of that age to be going through menopause, I am not surprised to be up in the middle of the night.

Low point in the day
 

I have read that a persons low point is 3-00am. It is said that if you are close to death, and you make it past 3-00am, you will survive another day!!!! I wonder whether it is the same for animals?
I can't say I feel at my worst at 3-00am, these days I sleep past that time and get up at 6.00am. I think evenings are the time I feel my meds have given up.
Ron

TCM Clue?
 

http://www.sacredlotus.com/acupunctu...flow_times.cfm

There must be clues in TCM as to sleep/wake patterns in PD and any other condition. I wish I knew more....:confused:

Rick,

Do you drink any liquids after 7pm? That is a old rule. I also find if I am not relaxed before going to bed I have urinary retention so I am forced to get up every few hours to get rid of it. When I am relaxed I notice I can get rid of it all at once. When do you take your L-Tyrosine? I use it at night to help sleep without taking medications and it works for me.

Bonnie

Bonnie-
I don't drink much in the evenings. I blame the sinemet on alternate nights and the requip on the others. :)

I am taking the tyrosine three times a day at present. I am on Day 4. I want to find out if it will cut my requirement for meds by allowing me to produce more of my own. Last night I went to bed at 11:30 without going off for the first time in several months and I am anxious to see how I do tonight.

Hope springs eternal - Rick

How's everyone sleeping. I've noticed a new trend in my own patterns. Everyday at 3am, nearly on the dot, I wake up. Many times clear headed. My symptoms I would say are about midline. Three nights ago I started with 3mg of melatonin 30min before bed it knocks me out, but when 3 o'clock rolls around, I'm up again.

Getting up at 3 is not so bad, it's what happens to the rest of the day that's tough. Yesterday I said screw it and made a double espresso at 3:15am. Roll with the punches... and shake a lot :)

Circadian cycle:
http://structuralevolution.org/blog/...nese-clock.jpg

light ,night, etc
 

11-4am is when i feel most like me - unfortunately no-one else is up to see it!
daytime sleepiness is an issue, meds related. If it weren't so antisocial I would be as nocturnal as a bat! There was a good programme on bbc about body clocks. it reckoned that light can be used to get things more normal. circadian rhythms being disturbed is a principal reason that many v elderly people in care facilities are over-medicated. I no longer fight the wakefulness at night but use it instead, no partner means I can make that choice. I normalize some as days get longer and there is more light, but problem returns at height of summer. most recently I have been using quiet night hours for drawing, a return to making art after years of digital excess. often wonder if exposure to computer monitors etc exacerbates sleep issues and dysfunctional rhythms......... another form of stress??

lindy

bump bump bump

[QUOTE=reverett123;336212]This is important stuff. Sleep disturbance can drive you bonkers. In the extreme, say meth addiction, you end up having conversations with the wallpaper and similar hallucinations. .. QUOTE

Moderators, if this is not wanted, please delete:

And I went, and behold, I saw a white horse…”

The Beast watches and observes, looking for weaknesses, deciding when and where to attack; changing its strategy and tactics as it learns. It has explored our bodies and our minds; it has great power and we are very weak.

And after some time, it figured out the simplest thing: human beings get tired. We have to sleep. The Beast never sleeps. The Beast never rests.

All it has to do to win is wear us down.

And that is easy to do.

Sleep deprivation. The Beast came at me three months ago with a new tactic, a new symptom (that is, new to me. I found other Parkies on the internet who had been attacked in the same way, one of them at the exact same time as me). The new tactic is a game called “No position is tolerable”. It is very simple. Every position of my body is uncomfortable. And not like an uncomfortable sofa; more like being on a planet with crushing gravity. All positions are intolerable; sometimes after a few seconds, sometimes after a few minutes; not more than ten minutes at best. Cannot stay lying on my back; roll to the side and my hip bone feels like it is on hard cement with a very heavy weight on top - it feels likes my hip bone will snap, so I stand up but my upper body fills with cement and is too heavy for my lower body and so I start swaying out of balance in the middle, and then sit down on a chair but that is worse - just look at how your body has to contort itself to sit on a chair - or a toilet, or a car seat. Cannot tolerate it. So sit on the floor - no good - lie on stomach - that’s worse.

I am flopping around from position to position but there is no place in this world where I can rest for 10 minutes. And so, what could be more obvious: I cannot sleep.

The Beast started this new game and just has to sit and watch me get exhausted. That is all it has to do to conquer me, to destroy me. Just keep me awake, by making every position of my body impossible for me to endure. Such a simple plan - brilliant, really.

After three days and nights, hallucinations start. After 5 days, you are crazy, and it gets written down on your chart as “episodes of psychosis” or some such thing. Actually you are perfectly normal, ANYONE, a totally healthy person, not taking drugs, will start to hallucinate. That’s why sleep deprivation is used as torture. You would tell them anything just to be allowed to sleep.

How many Parkies have been given anti-psychotic drugs or institutionalized simply because they need to sleep but are judged to be insane?

“… testing lab rats with continuous sleep deprivation for about two weeks or more inevitably caused death of all the rats in experiments conducted in Allan Rechtschaffen’s sleep laboratory at the University of Chicago. The cause of death was not proven but was associated with whole body hypermetabolism.”...

…The brain's ability to problem solve is greatly impaired. Decision-making abilities are compromised, and the brain falls into rigid thought patterns that make it difficult to generate new problem-solving ideas. Insufficient rest can also cause people to have hallucinations, depression, slow reaction times, panic attacks, hypertension, slurred speech….

John Schlapobersky was tortured by the apartheid regime in South Africa in the 1960s.

Here's what he said about sleep deprivation:
"Making a program in which people are deprived of sleep is like treating them with medication that will make them psychotic. I was kept without sleep for a week. I can remember the details of the experience, although it took place 35 years ago. After two nights without sleep, the hallucinations start, and after three nights, people are having dreams while fairly awake, which is a form of psychosis.”
"By the week's end, people lose their orientation in place and time - the people you're speaking to become people from your past; a window might become a view of the sea seen in your younger days. To deprive someone of sleep is to tamper with their equilibrium and their sanity."

In Chapter 17, we printed up cards, the size of business cards, for Parkies to hand out depending on the circumstances. For example:
I have Parkinson’s.
WTF is your excuse?
Or
I have difficulty undressing myself.
Want to be a good citizen?

And now we need a new card to hand out:

I am not psycho.
I just need to have a nap.

http://parkinsonsdance.blogspot.com/...hapter-30.html

sorry i got carried away - i did not intend to scare everybody
got carried away
and now it is 4 am

Bob, I went through exactly what you are experiencing months ago

5 mg valium 3-4 hours before bed, and 5 mg of ambien 1 hour before bed works for me..Can also add a Unisom

been there
 

i stayed up all night many times when on sinemet and requip. no sleep aide. Once i stayed up for two nights and you do start to hallucinate. i jumped over an animal that i swear ran over the path on a nature trail during that time.......but there was no animal.

now i do use a sleep aide. Even a couple of tylenol pm could help.

Sleep experience now is much different for me than before tincture. I guess my life is in 2 categories now Before Tincture/ and After Tincture . Before...up most of night with grab a couple hours maybe between bathroom trips and staring at the clock. Now, I take tincture before bed and turn on the Sound Therapy CD for PD by Susan Jonas and usually sleep fairly well with one trip to the bathroom during the nite. The one thing that puzzels me is..if I have to get up before 3AM, which is the usual...I walk & feel totally unconnected and bent over like the hunch-back of Notre Dame . If it is 4 AM .. I am fairly
normal again. It is almost as if I start making alittle of my own l-dopa by then. Is this possible? It is really strange to have such a difference in a couple hours time.

Thought I'd share about my friend. 3 AM is the best time of the day for her...she feels it has something to do with the meridians and when you are the strongest or weakest in certain systems. She can do things at 3 am that there was no way to do them the rest of the day. She's incredible. several months ago she was up exercizing in the middle of the nite. This is when her greatest movement is..I also wondered with her case..was it when the sinemet she took in the preveious morning was completely worn off and her own dopamine producing cells were kicking into production???

epigenetic influence
 

if blueberries can instruct our genes to make their own antioxidants then just maybe fava beans can instruct our genes to make their own dopamine. I wonder how scientists differentiate between foods and supplements that have/don't have epigenetic influence....Rick?

md

I fear that scientists are still arguing about whether there is any value in supplements of any type and if epigenetics even exists. Another drawback of an overly conservative system. Instead of wasting money and endangering lives with fringe ideas we do the same thing by repeating experiments to reinforce the status quo. At least the fringe occasionally pays off in a big way.

sleep patterns
 

Yes, I do see improved functioning at night. My low times are about 1 in the afternoon.

It has been a pattern of my days (nights?) that I function much better at night.
Remember doing quite a lot of digging into the reasons why this should be so a few years ago. Long and short of it then, from those ask your doctor experts and studies etc was that we are not programmed to need dopamine in the night and so we function quite well without it, somehow tied into melatonin, sleep-wake cycles, and the circadian rhythm thing, which in itself is a mysterious quantity...... not provable but observable, just like this night time thing is with us.

Also notable is functioning better with no sleep, in other words a missed nights sleep does not have me dysfunctional in the morning - no early morning off, but by ten am I am slipping into a bad cycle and starting to feel extremely off.

I don't buy it.
 

Lindy-
I think that was a "Go away little patient. The Doctor is busy." thing. We don't need dopamine at night???? Bull puckies!! I vote for the ebb and flow of hormones in the wee hours.

Amen!
 

Sometimes it makes me question about how doctors form theories; I wonder if they misplaced "Common Sense" in the quest for the cure?

Circadian rhythms ARE there, and we ARE affected by them
 

Along with many other creatures.
The neuroscientists have not spent time on this for nothing.
There IS an ebb and flow of chemistry going on in the brain and the rhythms are there to regulate us.

PD is a condition of dysregulation as well as disorder.

Sleep disruption was one of my first major symptoms, or at least the one of the first that really concerned me.

I don't think it is that off the wall, and I think that the scientists are right to see as creatures who have a lot in common with each other.....

My take...

Lindy


New Regulator of Circadian Clock Identified: Dopamine Study May Have Impact on Activity and Sleep Rhythms in Parkinson's Disease

http://www.sciencedaily.com/releases...1020111219.htm

Interactions between Dopamine and Melatonin Organize Circadian Rhythmicity in the Retina of the Green Iguana

http://jbr.sagepub.com/content/22/6/515.abstract

Dopamine Mediates Circadian Rhythms of Rod-Cone Dominance in the Japanese Quail Retina

http://www.jneurosci.org/cgi/content/short/19/10/4132

Circadian rhythms of dopamine, glutamate and GABA in the striatum and nucleus accumbens of the awake rat: modulation by light.

http://www.ncbi.nlm.nih.gov/pubmed/15009508

Circadian rhythms?
 

The earth is 70% water: the ebb and flow of the tides are controlled by the effects of the moon upon this planet. Knowing that our bodies are 70% water as well, why can we not realize that there are "Cycles" in our lives as well? High tide produces one affect and low tide something else; is it so hard to make a connection between these facts? I wonder............

circadian rhythms underlie everything
 

http://circadiana.blogspot.com/

Take a look at this one. -Rick

My point is that we have evolved to be in tune with these things, why else would something like a flight around the world give us jet-lag. And our brain chemistry and body chemistry reflects this. But as PwP we are very disordered, we get things like orthstatic hypotension, poor sleep patterns, otherwise sometimes known as raging insomnia:D .

I remember pre - ldopa - what it felt like.

I was editing video immediately prior to dx, anyone who has done this on any scale knows the frame by frame meticulousness that is required. I could go THREE days without sleep and retain focus... but physically I was falling apart.
Whatever chemicals normally tell people to stop were not working for me. That part of the chemistry did work until I went onto sinemet. And the first thing I did was sleep, anywhere and everywhere, across my keyboards, in my chair. The relief was amazing. A friend diagnosed the same month as me and with similar symptoms was falling asleep at the wheel..... he took a break from driving. Sleep was an issue for lots of PwP......

The thing is a NORMAL brain has these ebbs and flows. But we have PD brains. I don't think we can expect to compare the two or go back to what we were. We try to bridge the gaps. I still stay awake longer than I should, my sleep hygiene stinks! We don't need no dopa at night, but we need less. I am convinced of this......

Lindy

Thanks
 

Yes, Rick. I will check it out tomorrow: finally SLEEPY before 2 or 3 o'clock in the morning so I am off to take advantage if at all possible. G'night all. :cool:

Definitely need dopamine at night for me!!

hey, you woke me up again, Rick!
 

All these musings got my Irish up. WTF? Why is it that something as basic as sleep deprivation's effect on PWP is so mysterious that it sends all of us into a wild goose chase for data. "Sleep hygiene." Oy vey. We're doomed. Or at least I am.

Listen, I got fewer than a dozen nights of uninterrupted sleep in the first 5 years of motherhood (2000-2005; I stopped counting after that). I suspect that sleep dysregulation was a hallmark of emerging PD. I suspect it also hastened the onset of my PD (though that was possibly mitigated by the estrogen flooding). The present decade has seen no more than 3 full night of uninterrupted sleep. Like many of you I wake up at 3:30 (if I've gone to sleep at all). I am in pain and Bob Dawson's description of trying myriad different positions is spot on. If I could slither out of my body like a snake shedding her skin I would. But then again, that would take energy, and I'm fresh out.

Of course it's also quiet (except for my snoring family) at that hour. When my three guys take a break from what is surely a sign of existent or impending neurotrouncing sleep apnea, it's really quiet. I love that. Once I am upright and the pain subsides a bit, I feel most myself, mostly because nothing is required of me (no stressors) and my senses are not overloaded by other people's activities and concerns. I am calm and, if I've slept, clear-headed. I can write coherently. My tremor is quiet. My laptop warms me like some cats warm their companion humans. All is right in the world.

Of course, I pay the price the next day for this little island of peace.

And I am 99.44% certain that these habits will hasten my death. Sigh. (BTW, did anyone notice that the Scripps' research release described PD as "fatal." I thought PD's just supposed to make us wish we were dead…? But I digress.)

My friend, who also has PD, just did an overnight sleep study and learned that she stops breathing on average 5 times/hour. She was told that this robs her muscles of oxygen and that is why she awakens in pain. She was told that this also robs her of restorative sleep, which affects memory. This cost her thousands of dollars. She is immensely wealthy so having no insurance is not an impediment, as it is for me. She's got strategies now. I'll report on what they are if anyone is interested.

So I'm pretty sure we would all benefit from a sleep study and could probably find a couple of interventions that would be effective. (I love the acupuncture implants, Fiona, thanks! Maybe that's what Lady Gaga has.) But, you know, on the other hand, I am getting more than a little bored trying to analyze, manage and control every bleeping detail of my life. God, it is so damn dull.

Anyway, I am glad you brought up this relevant, useful topic, Rick. Really. I'm just cranky today. And maybe a wee bit tired.