Anybody suffering with Severe Rem Behavior Disorder ?

[jimdickie]

If anybody out there has any experience being diagnosed with Rem Behavior Disorder I would very much appreciate discussing what one does to deal with it, and if there is any medication besides Klonipin that seems to keep the violent actions under control.

[archivesgirl]

Re: Anybody suffering with Severe REM Behavior Disorder

Hi Jim,
Yes, I was diagnosed back in 1999 with RBD and that was before I ever had any sleep studies done. I had lost my sense of smell at the same time. I was also diagnosed in 2002 with Obstructive Sleep Apnea for which I use a CPAP machine. The reason I mention that is because in order to gain control over RBD, you have to have good control of the Apnea. Having said that, I have shown RBD every time I've had a sleep study done. Is it severe? Yes. I haven't been on ANY medicines that have stopped it. I take Klonopin, 2mgs. at night. My sleep doc doesn't want me to take more because of the Apnea. Last Friday night was the last straw...I violently went flying out of my king-sized bed and injured my head, right side of my body with swelling (knee, hand, ankle) and bruising, besides my head, neck, upper back and rt. shoulder being in severe pain. And that was done with my King bed up against the wall which I hug when I sleep and with my CPAP mask on my face connected to the machine which I took with me. So, my sister and I managed to put my king mattresses on the floor (which is recommended by sleep doctors who treat RBD). I can't sleep with anyone in the bed because I become violent. Between the violence (angry shouting and punching, etc.) and the screaming which leaves me with a sore throat for days afterwards, I'm at my wits end since no quality sleep leaves me with idiopathic hypersomnia (excessive daytime sleepiness) where I fall asleep without much warning. I don't know what to tell you but if you're willing to share what you have done besides take Klonopin, when you were diagnosed and was it by a sleep doctor or neurologist? Have you tried any other meds? Have you had a second opinion or gone to any other sleep center that actually treats RBD? Well, I've worn your ears out. Sorry I couldn't be more helpful. Is your mattress on the floor? Have you walked, or done any other automatic behaviors? I've had what's called hypnogogic hallucinations, thrown animals, and too many behaviors to recount here. I'm curious how long you've had RBD? Thanks, Gayle

[houghchrst]

Welcome Archivegirl. I hope Jim comes back to talk to you. I am sorry you are going through so much but I am glad you found us and hope you stick around.

Until Jim I didn't know RBD was a thing. Though I have seen medical shows where a sort of night terror seems to take over the sleeper. My 19 yr old son had horribly, terrifying night terrors throughout his childhood and they started again

How did yours start out if I might ask? Did you start out with the occasional hitting and talking during sleep or did it start up full blown as it is now?

I ask because I have recently starting talking in my sleep, hitting, and waking bathed in sweat unable to move because I am so cold. The entire time I am having very vivid, emotionally charged dreams.

Probably stress for me.

I am glad to see you here. Browse around. Everyone is great.

[jimdickie]

Hi Gayle !

Gayle,

I was beginning to wonder whether or not anyone else in the world had RBD ! Just kidding...I have some things to do this am, but I will sit down with my notes and tell you myn story, along with interventions tried, meds tried, etc.

I'll talk more at you later today. You may want to go to your M.D. re- latest round of bruises and to document event, and ask for a few days of pain meds !!!

Thanks for posting,

Jim

[archivesgirl]

In the beginning...

Hi Christina and Jim.
I should start out by telling you all that I used to frequent the boards here at BrainTalk many years ago, mainly the Fibromyalgia forum.

I'm 58 years old and the RBD goes back to my maternal grandmother! As a young child my sisters and I had the responsibility of "waking up" grandma whenever we heard her across the hall from our bedroom. This was the 1950s, 1960s (I come from an old family meaning my grandmother was born in 1879) and as a child it was frightening to go into a dark bedroom where someone was moaning and screaming out in a high pitched scream. My grandmother always wore her frizzed white hair in a bun during the day but it was down her back at night and in the dark it was like a horror movie when she's sit up in bed, sound asleep screaming. She was always dreaming about snakes or the Devil trying to get her. My poor grandmother fell out of bed three times that I can remember in my teens and broke her nose twice!

My mother always had problems coming awake. We would try and wake her and she'd moan but couldn't wake up. When we finally got her up she'd tell us that she was fighting to wake up but couldn't! My sleep doc said she thought my mother had Sleep Paralysis where the person is aware but can't move to wake up.

I started sleep walking and talking somewhere around the age of 9. That lasted into my teens. My sisters used to watch me and try to hold conversations with me!

Fast forward to the 1990s. I started walking again. I was in my late 30s, early 40s. It was so strange. I felt like I was unable to control my body and walked in circles around the living room and rearranging knick-knacks and feeling like I was in a dream but I wasn't. I'll have to look at my medical recs to see why my physician referred me to the Sleep Neurologist in Chevy Chase, MD (right outside of DC). I had lost my sense of smell at the same time and it was abrupt which was shocking to me. There have been so many incidents these past 13 years, i.e., trying to open a window and geting caught up in the venetian blinds, seeing spiders come at me (which are termed hypnogogic hallucinations), throwing my cat against the wall thinking it was a wild animal. But without having a sleep study done in 1999, the sleep neurologist diagnosed RBD saying that it often doesn't show up in sleep labs but is diagnosed from the patient's symptoms and history. Well, in 2002, it DID show up in my sleep study and every sleep study since even with medication that's supposed to stop it. On another ocassion one of my sisters and I were cleaning up her bedroom to do some painting and we both laid down on her bed for a break. I fell asleep and in that time I started pummeling her and she got hurt. I can't sleep with anyone in the bed with me. That sister is hearing impaired and we live together. I have a baby monitor in my BR and our dog used to sleep with her and listen to the monitor and then awaken her when I'd start shouting or screaming. She then could hear it through the monitor enough to know I was in trouble but the dog died last year and besides missing her, she was a great "service dog".

I'm so sorry about your son having grown up with night terrors and now having them start all over again!! Has he ever had a sleep study? They've got newer technology so you can have one in your home even. I hope he gets diagnosed and treated (which can be another nightmare).

It sounds like you're having night terrors since you're waking up in a sweat but you're hitting also and then you're so cold you can't move. The only thing it reminds me of is Diabetes or your blood sugar dropping during the night and causing the hitting, sweating and coldness. Not that I have an M.D. behind my name the last time I checked. :)
RBD can be a precursor to Parkinson's Disease. That's what worries me the most. I'm not sure if this site will help you or not but I use it and it has decent forums also. It's Only registered and activated users can see links., Click Here To Register...

I'm certainly interested in hearing what you find out. Again, I will check my med recs which has a long report of when I first went to the Sleep Neurologist (The Center for Sleep and Wake Disorders, Only registered and activated users can see links., Click Here To Register...) so that will jog my memory of what symptoms I first reported to them.

Sorry for talking your ears off and thanks for welcoming me. I'll be interested to hear if you have a sleep disorder that has been passed along to your son. Anyone else in your family have any problems with sleep even if they are undiagnosed, that you know of?

Talk to you soon and Jim should be posting also. Gayle

[Alexilovenyc]

REM sleep behavior disorder

Hi all. I really appreciate your messages. I was recently diagnosed with REM sleep behavior disorder and I am doing great with Klonopin. What bothers me the most is that some pieces of research show that RBD is a pre-motor phase of other diseases such as Parkinson disease or Multiple System Atrophy. My sleep doctor told me that, if I also had autonomic dysfunction, the likelihood to have Parkinson is even higher.
I then asked him what is autonomic dysfunction and he explained that the autonomic nervous system is the part of your brain that controls your involuntary functions (bowel movements, urination, sexual function, the heart, sweating, etc).
I told him I was constipated, had erectile dysfunction, and that I had to wake up in the middle of the night several times to pee. Because this is also part of the autonomic system, my sleep doctor though it was worthwhile to have a formal evaluation of the autonomic nervous system.
I am from New York and there is a Dysautonomia Center at NYU (New York University) that specializes on this issues (Only registered and activated users can see links., Click Here To Register...), I am willing to go there to undergo autonomic testing.
Have any of you suffered any autonomic symptom or been tested positive por autonomic dysfunction?

[brainbox]

Having RBD, am concerned that c40% of sufferers go on to develop Parkinsons or some other neurodegenerative disease. Have also been taking Sertraline an SSRI which might generate RBD. Would appreciate any comments Thanks

[Bikelink]

Hi brainbox and others. I've also been dx'ed with RBD (sleep study confirmed). Having a med/research background what the studies show is that essentially if you live long enough most of us will develop Parkinson's Disease (PD) (most), or related disorders. RBD is essentially a behaivioral 'biomarker' for alpha-synucleopathies...problems with those brain cells. Melatonin and clonazepam are treatment for the *symptoms* of not being paralyzed during REM sleep so you can thrash/fight/act out some dreams which can be dangerous to yourself or your bed-partner. However as you are asking yeah that's just step 1 the real problem/concern is most of us will develop a neurodegenerative disease. There are MANY treatments for PD but as of yet no 'neuroprotective' medication that will prevent progression to PD (or another related disease) from RBD, or progression of PD once you get it. There currently aren't any studies looking at a neuroprotective agent but Only registered and activated users can see links., Click Here To Register..., and there are lots of PD studies on the Only registered and activated users can see links., Click Here To Register... (though unfortunately they don't yet ask about RBD to find us, specifically).

[houghchrst]

Hi Bikelink, wow I can't believe someone popped in here and it is great to see you. I had forgotten my post here as for my son and I we both started using Medical Marijuana for many issues and have found that smoking just before bed has immensely changed our lives when it comes to sleep and other issues. His night terrors have all but disappeared we both are sleeping a good solid 7-9 hours of sleep. Not to mention so many things in our lives have changed since then. I hope you pop back in and maybe find some other areas to be of use to you.