[Stitcher]

Why is sleep such an issue for so many of us.

My son IM'd me from Iraq at 11:30pm to say "Go to bed." Ha ha ha...I told him by 4am, since that is my limit when I don't sleep at night, but now it is 4:30am....

If I take medication to sleep, sometimes it works, sometimes it doesn't. What to do! Some nights I am in bed at 9pm, can't keep my eyes open.

Such a strange sleep pattern I have developed.

How about everyone else?

[ol'cs]

I am always tired. Sinemet makes it worse. But i'll sleep for a few hours then have to get up because pain wakes me up. I'll be up for a few hours then back in bed. If I try to have a "normal" day, and fight all urges to sleep, I may just go out for 12 hours , throwing my meds all out of shape. I pay a big price for sleeping odd hours, in the way of family relations. Sometimes I feel like i'm just not there for my kids.
Also, i don't move much when I sleep, which causes it's own constellation of problems, like blood pooling in legs, or sleeping full weight on an arm for too long. NOw I can do better if i take a sinemet cr before bed, but risk hallucinations or bad dreams.
This is an important issue for many PWP, one that causes a lot of problems and often doesn't get any better if you try and regulate it with drugs. It often is the cause of putting many a PWP out of work, because they just can't keep schedules.

[lou_lou]

I have nightmares, many years now I believe it has been my entire life -
I will wake up crying not knowing (sometimes) where I am...
I dream about my son when he was little,
I see ugly faces etc. - I will occasionally have some type of grand dream,
usually about heaven ...
I sleep in shifts of 5 hours, I will usually awake because I cant get a deep breath...
oh well ?
Can an insomniac be fined for resisting a rest?

[adelle]

TenaLouise.....funny

[K.Ibsen]

Sleep is probably my biggest problem, and my sleep difficulties are many and varied. The medications only change the problems. The doctors and I have yet to come up with any solution that puts me on a regular schedule, so I can be like everyone else. I'm at the point that I am considering just not fighting it. Perhaps I should just sleep when my body says it wants sleep and be awake when my body says be awake.

Sometimes I experience what I call "death sleep." It's like someone increased gravity and I didn't get the memo. The urge to sleep is so strong that there is no way I can fight it off. I compare it to being injected with some of the drugs they use for surgery. My death sleep episodes can happen at strange times--usually in the middle of the day, but, unfortunately, seldom at night.

• Sometimes, I can sleep for several hours mid-day and still sleep normally at night.
• Sometimes, I can fight off the mid-day sleep and have a terrible time sleeping at night.

Usually, when I can't sleep, it will seem like all the conditions are right. I can be comfortable, yawning, can't keep my eyes open, relaxed--all of the pieces seem to be in place. But I just don't fall asleep. It's like taking a walk and not being able to take that very last step to make it back home.

I'm coming to the conclusion that the "normal" sleep paradigm may simply no longer apply to me. I used to be a marathon runner, and to run that far, common wisdom is to "listen to your body" to keep the exertion within a range that allows you to keep going almost indefinitely. It takes some practice, but once you've learned to "listen," it's amazing how far you can run (given proper conditioning, etc.).

Now I'm thinking that perhaps I should apply that same "listen" concept to PD. Maybe I just need to accept that my sleeping is going to be different. It does present a challenge to familial, social, and work relationships. I haven't found many folks outside of the PD world who can understand our sleeping dilemma. I'm wondering if fighting it may be more stressful than just learning to live with it and adjusting to it.

One thing is evident--I haven't been able to find a medicinal solution that I like.

[Heidi L]

Sleep is an issue in PD because you are also losing cells that produce orexin/hypocretin, the neurotransmitter that causes wakefulness. Your symptoms are the same as people with narcolepsy, sleepy during the day, insomnia at night.

here's a link to the research:
http://neurotalk.psychcentral.com/sh...ad.php?t=25930

I have also written a paper about this, it's on the thread called Narcolepsy, Parkinson's Disease, and Lewy Body Dementia.

[oyster]

i have a sleep symptom, where when igo into rem and start dreaming athing doesnt happen that should. normaly our brain stem or some suborgan neaby, actualy disconects and the body becomes vertyaly paralysed. instead, for me, i physicaly act out what im doing in thedream. unfortunately, part of this symdrom include a high incidence of violent and nightmarish dreams

my wife has to sleep in a separate bed.
one study i read claimed that of the several hundred people studied thar had this syndrome over 60% developed pdwithn 10 years.

itsbeen a few months since i read about this so ive kept my facts a little vague.
it is different than vivid dreaming, please correct me if im wrong. vivd dreaming is when the dreamed is aware IN the dream, is aware and able to concously change it, actucal physical movements are not included.



i also get insomnia. my wife has helped me to not feel guiltyabout it.

[Heidi L]

Oyster- what you describe is called REM behavior disorder (RBD). It has been shown to be a fairly reliable indicator of impending PD. I think it's discussed in the paper I linked to above.

KIbsen- the "death sleep" you describe is the same as a narcoleptic attack. I like the term "irresistable sleep intrusion". I've been doing that since I was 4.
Most people think narcolepsy involves complete loss of muscle control (cataplexy), but only the most severely affected individuals have that symptom. Let me guess- a couple hours after a meal, you feel like you've been drugged. You sleep for a while with raging REM. Then you wake up dizzy.

My paper explains how antibodies to gluten can cause all these problems. I hope to be able to prevent the progression into PD and dementia by increasing awareness of these earlier sleep symptoms.
Believe me, you don't want to get to the dementia stage- it happened to me, and I'm just lucky I'm educated in biology and research, and have learned better than to trust doctors much anymore. I was literally a zombie and they just gave me drugs that made it worse...

[K.Ibsen]

Originally Posted by Heidi L

KIbsen- the "death sleep" you describe is the same as a narcoleptic attack. I like the term "irresistable sleep intrusion". I've been doing that since I was 4. Most people think narcolepsy involves complete loss of muscle control (cataplexy), but only the most severely affected individuals have that symptom. Let me guess- a couple hours after a meal, you feel like you've been drugged. You sleep for a while with raging REM. Then you wake up dizzy.

Yes, that describes it. I do have extensive loss of muscle control. I recall being conscious and trying to move my arms or legs with no success. I couldn't even lift my eye lids. It does seem happen after I've eaten something. It does feel like I've been drugged--like the medications they give you for surgery. I dream a lot. I had not related dizziness with the sleep episodes because I have trouble staying upright much of the time--more of an instability than dizziness, though.

I have those dreams where I'm aware that I am dreaming and can change (or maybe disagree with) the course of the dream. For most of my life, I've not been able to remember my dreams. Most of the time I can't even recall that I dreamed at all. For these vivid(?) dreams, I sort of remember the reality of my participation (e.g. my emotional state during the dream), but I still can't remember the substance of the dream. It's the feeling you get when you know that you know something, but just can't retrieve it.

Karl

[Heidi L]

I haven't quite figured out what the relationship to REM sleep is yet. There are two areas of the pons that switch it on and off and I think damage to them causes the array of symptoms.
Cataplexy is when you go into REM sleep while conscious and your body loses all muscle control like it's supposed to when you're asleep. This is the behavior most people associate with Narcolepsy but only about 20% have it.
RBD is when the body is asleep and in REM but doesn't shut down the signals to the muscles. So you move or walk or talk in your sleep.
The other thing you mention is called Sleep Paralysis. It occurs when falling asleep or waking and you are conscious but cannot move. I had this during nap attacks. I couldn't move until I was done "sleeping it off". Then I would wake up with something like a hangover, I guess dizziness isn't the right word.
Another symptom is hallucinations. A lot of PWN have vivid hallucinations upon dozing or waking, but mine were always limited and mild. Kind of a psychedelic screensaver eminating from my optic nerve when my eyes were closed. Moving pulsing shapes or waves in shades of light and dark.
Vivid dreams are common in PWN. I used to wake up in the morning and have to spend time convincing myself the dream wasn't real. That I wasn't really mad at my husband or really hadn't done something stupid or whatever. Those days are gone though, I think I killed off the REM cells too. I barely dream at all anymore.

I believe all of these symptoms can be explained by antibodies attacking the sleep centers of the brain. The specific manifestations depend on which areas have the highest concentrations of antibodies clogging them up.