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So I’ve begun talking in my sleep and reaching out for things (or people).  And when I wake up I know I’ve been doing it.  I can’t believe how vivid my dreams are.  It’s like crystal clear.  And I can remember each one because I get up 4-5 times.  But sure as sin I have a dream, even if only for an hour, and is picture perfect quality.  I just woke up from having a dream where my stepfather had come home and was angry there were dishes in the sink. I tried to explain they weren’t mine but would clean them anyways.  Then he proceeded to go into the bathroom (in which there two women with him).  I followed and then tried to choke him.  

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1 hour ago, PatriotM said:

Sounds like RBD.  I've been having issues with RBD and find that Melatonin helps.

Any particular brand you use?  Because I do use melatonin and it’s had a so-so effect.  Pretty scary symptom.  I have no dx but methinks it’s this or like something relevant.  Thanks for responding.  Hope you’re well.  I’m going to try CBD this week as well.  I used to smoke recreationally and also because I wanted to be med free.  

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It throws my system into a tizzy!  It felt like I was on fire.  And I’ve been smoking for a decade.  So not sure why the intolerance all of a sudden.  Also, medication doesn’t seem to make me drowsy.  I’m never tired.  It’s so weird.  What about you?

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I've had RBD for over 10 years.  Ive been taking Clonazepam for it, for the last 5.  It works great for me and is considered the gold standard for treating RBD.

RBD can be somewhat dangerous if left untreated.  I got mine promptly treated after breaking my hand and fingers during a wall punching episode.

 

 

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9 minutes ago, afroney said:

I've had RBD for over 10 years.  Ive been taking Clonazepam for it, for the last 5.  It works great for me and is considered the gold standard for treating RBD.

RBD can be somewhat dangerous if left untreated.  I got mine promptly treated after breaking my hand and fingers during a wall punching episode.

 

 

I haven’t had an episode since.  So maybe two total episodes in 5 months.  Still...

The crazy thing is, benzodiazepines don’t make me sleepy or even drowsy.  I feel wired at night.  Most sleep meds have no affect on me.  Tried Rozarem and it did zilch; waste of $40.  I smoked a little bit of a joint a few days ago and made me very drowsy.  But can only take a tote or two otherwise my entire system goes haywire and thinks it’s under attack.  Very bizarre considering I was a smoker for 10 years and had zero issues.  

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2 hours ago, zerohours000 said:

I haven’t had an episode since.  So maybe two total episodes in 5 months.  Still...

The crazy thing is, benzodiazepines don’t make me sleepy or even drowsy.  I feel wired at night.  Most sleep meds have no affect on me.  Tried Rozarem and it did zilch; waste of $40.  I smoked a little bit of a joint a few days ago and made me very drowsy.  But can only take a tote or two otherwise my entire system goes haywire and thinks it’s under attack.  Very bizarre considering I was a smoker for 10 years and had zero issues.  

RBD started that way for me.  It got worse year after year.  I finally had the docs do something for it.  Cuts, bruises, broken bones, etc.  Not to mention the problems of trying to share a bed with a girlfriend at the time. 

Hopefully, yours stays the same or gets better. 

I haven't had much luck with MJ and PD either.  It can make me feel strange, as you described.  I have troubles with balance and falls, which MJ makes worse in large amounts.  Its all about moderation.  MJ helps with my arthritis and controls symptoms leftover from a severe C-Diff infection Ive been fighting for a couple years

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7 hours ago, afroney said:

RBD started that way for me.  It got worse year after year.  I finally had the docs do something for it.  Cuts, bruises, broken bones, etc.  Not to mention the problems of trying to share a bed with a girlfriend at the time. 

Hopefully, yours stays the same or gets better. 

I haven't had much luck with MJ and PD either.  It can make me feel strange, as you described.  I have troubles with balance and falls, which MJ makes worse in large amounts.  Its all about moderation.  MJ helps with my arthritis and controls symptoms leftover from a severe C-Diff infection Ive been fighting for a couple years

How was the sleep itself?  Mine is always fragmented.  I go to sleep at 2:30am; up at 6:30am; sleep until 8:30; again until 10 or so.  

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6 hours ago, zerohours000 said:

How was the sleep itself?  Mine is always fragmented.  I go to sleep at 2:30am; up at 6:30am; sleep until 8:30; again until 10 or so.  

Yeah.  Pretty much like how mine was.  I retired on disability, so the fragmented sleep doesn't bother me anymore.

Fragmented sleep can be caused lots of issues with PD.  I've done 3 sleep studies - its really good to have at least one done if you can.  They found I had severe central apnea, and RBD.  They also said I literally tossed and turned all night (I had no clue).  One VPAP machine and some pills was all it took to get somewhat normal sleep.

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30 minutes ago, afroney said:

Yeah.  Pretty much like how mine was.  I retired on disability, so the fragmented sleep doesn't bother me anymore.

Fragmented sleep can be caused lots of issues with PD.  I've done 3 sleep studies - its really good to have at least one done if you can.  They found I had severe central apnea, and RBD.  They also said I literally tossed and turned all night (I had no clue).  One VPAP machine and some pills was all it took to get somewhat normal sleep.

I had a sleep study done about a month or so again and it came back normal.  No movement. Just fragmented sleep.  I have no dx btw.  But I suspect I have something neurological going on.  Been a frustrating 5 months.  Feel like I’m just waiting for new/worse symptoms.  

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17 hours ago, zerohours000 said:

I had a sleep study done about a month or so again and it came back normal.  No movement. Just fragmented sleep.  I have no dx btw.  But I suspect I have something neurological going on.  Been a frustrating 5 months.  Feel like I’m just waiting for new/worse symptoms.  

RBD is often the first warning sign of PD.  Its very rare in healthy adults. It was my first symptom and started nearly 10 years before my diagnosis.

Have you tried Trazadone? I took that for nearly a decade and it worked pretty well for sleep.

 

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58 minutes ago, afroney said:

RBD is often the first warning sign of PD.  Its very rare in healthy adults. It was my first symptom and started nearly 10 years before my diagnosis.

Have you tried Trazadone? I took that for nearly a decade and it worked pretty well for sleep.

 

I’ve tried every kind of sleep agent.  Nothing makes me drowsy.  I can fall asleep ok these past few weeks but my biggest bugaboo is getting straight hours of sleep—like 6 would be the holy grail for me.  I was working off 6 hours of sleep for the past 5 years or so anyways.  I would routinely go to bed at 11/11:30 and wake up st 6-7 every morning.  So it was my habit at that point.  I haven’t needed 8 hours in a very long time.  But March 4th, out of nowhere, I can no longer fall asleep, or sleep more than 4 hours at a time. For example, last night a passed out at 2:30am and then up at 6:30; up for half and hour and then woke up at 10:25 or so.  So two disjointed sleeps of about 3.5 hours each.  And of course bizarre, nonsensical dreams.  

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Two nights ago I Woke up from a bad dream, yelling at my Wife. Bolted upright and tried to get out of bed. I think The tubes from My cpap machine stopped me. Took them off and went to the bathroom. My shirt was soaking wet. 

I got back in bed and went back to sleep wondering why my wife was holding me so closely.  I only remembered half of that when I woke up. She said I yelled, “oh no I forgot that..”

I had a bad dream about dropping something. 

She said I need to go get tested ASAP for rem sleep behavior disorder and no more tv or computer right before bed. 

I Emailed my MDS and he made a referral for a sleep study at Johns Hopkins.

ugggh..more testing. I seem to have a brain that keeps on giving...

-S

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Still have fragmented sleep two or three nights every week.Sometimes bad dreams that I woke up from.Last night,I was struggling with talking in my sleep,during a bad dream,then I woke up,after 4hours of sleep.I use melatonin 7 half mg and benzo,but sometimes they help,sometimes they don't.I am thinking of getting a sleep study too.Hope PD will give us a break someday.

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Oto,

sorry to hear about your troubles. They sound just like my troubles. 

Melatonin doesn’t work for me. Unless I stay off of it for about a month and then take a 20mg dose. Then it still might not do much.  

Maybe you should get a sleep study. My MDs is the third doctor to tell me to get one, so I finally gave in and said Yes after my wife said Or Else!

the other way to get some sleep is to totally exhaust myself so that I:running on fumes. Then I get about 7 or 8 hours of sleep. But it takes a lot to exhaust me. Some thing like walking 5 miles, then swimming for an hour, then doing laundry, then I might get a full night sleep —- but. Might still dream just be too tired to wake up.

And so it goes...

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