I have a rare sleeping disorder, anyone else here have it?

FadedRose

FadedRose

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I was diagnosed last year with a rare sleeping disorder by a sleep specialist. I'm his only patient that he's had and the youngest he's ever seen, which is even more rare or so he says. I've had it since I was a child it appears since I can remember the episodes and so does my father. I have two sleeping disorders that co-exist and the both of them together is very rare. The first one which is the big one and rare according to him ( he wanted to present my case at some medical conference...I'm his own personal lab rat it appears) is R.E.M Sleep Behavior Disorder which basically means I act out my dreams during R.E.M sleep. The night terrors I have are very real to me. The best way to explain it would be that I dream that I wake up but I'm actually still dreaming and what monster I see I think I'm really seeing but I'm dreaming. I've jumped out of bed running throughout the house screaming bloody murder, I also almost kicked out my bed room window, punched, kicked and assulted my husband, beat the living tar out of him dreaming I was being killed. Had a dream I was visiting my grandfather in the hospice looking out a window but where was in in actuality? I was on my bed room dresser looking into the mirror...it's weird. :P

The second sleep disorder involved non-rem sleep and is confusional arousal. So basically I'm not sleeping at all, my brain isn't.

The only treatment for it is Klonopin which I've gone off of for fear of becoming addicted after being on it for a year. I've been having issues sleeping without it and severe anxiety which I never had before I started Klonopin.

Is there anyone else on here who has REM sleep behavior disorder?

Here's a link detailing what it is for those who are still confused...
although research indicates that this disorder is linked to future development of parkinsons disease and other diseases I am not at risk for them because I've had this since I was a child and according to the doctor I would have already had symptoms.

I posted my experience on this board after I was diagnosed but here is the link: REM Sleep Behavior Disorder - The Dangers, The Science, The Experience

hope I'm not the only one here.:shock:
 
Wow- that's intense. I hope you're able to find some sort of treatment that can help. Does it make you fatigued during the day since you're not getting quality sleep? I don't have any major sleep disorder, so I can't really provide any helpful input except that I hope it's resolved sooner than later.
 
I was a "victim" of a sleeping disorder for many years and not knowing it. Mine were my legs, which would move back and forth, all night long. In the mornings when I awoke, I still would feel very tired and my legs sort of "aching".....

Stress was diagnosed. So I did cut back on my coffee and caffeine before bedtime. Tried relaxation techniques also. And for the past few years, it's gotten much better.
 
I don't know about me but I know that I snore (since college days) and that it had woken me up. (Nose vibrating.) I would love to go to a sleep lab to check for sleep apnea. If I do have it, that would explain my low energy during the day.
 
that is serious on sugar on tired on fatigues because on high on sugars, sometimes sleep disorder reason that is why!
 
Wow I am so sorry you had to go thru. When I go to sleep, I am aware of everything around me even when I dream I still aware of little thing move. Only once I did hit my husband and scream while I dreamed then I realized I was still sleep and dreaming. It was worst when I was in late 30's. I did not sleep at all for 3 months because my body went whacked. A lot of electric came out of my body and smell burn from my body. I was zombie for few years till it went away. Now I ignore all those and put myself to sleep. This rare disorder is new to me but I do not have violent eposide except for once. So sorry you have to go thru this.
 
My friend's father has the same thing, I think. He has choked his wife a few times in his sleep. The father takes drugs for it and it has drastically reduced the episodes, but not 100% guaranteed. The father now sleeps separately in a different room most of the time.
 
My little sister has apnea and the last time I went to the hospital, they told met they think I have apnea as well because when I fell asleep, my oxygen level went down and they made me sleep with a tube in my nose. I will have to make an appointment with the sleep clinic as no one (including my doctor) wants to refer me to it.
 
I have one. It been rarely in my years. I can remmy when I am under stress then I ended up hitting something like wall or walking in sleep but my eyes awake, no reason why.

I not chance go to sleep doctor so I label myself sleeping disorder unless it is very seruios.
 
warpedpink said:
You could be 92 and still be the youngest...
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:giggle::giggle: haha! I see the mistake I made...opps! I meant to say I'm the only patient he has that has this disorder as well as the youngest one he's met.

If you meant as in rarity for the disorder, possible but there are people who have it besides me.

To the poster about your father in law, or father-it sounds like he has a bona fide case of RBD. It's not uncommon for people who have it to sleep in seperate rooms. I do not because the damage I inflict on my husband is no where near what his would be as a man towards a woman. I'm not saying a woman cannot do brute damage to a man but in my case I leave bruises not broken bones and have never strangled my husband in his sleep. A typical episode would be him trying to wake me up from the dream and I'll punch and kick and fight him until I wake up. It sounds like the wife is still asleep when he's choking her which is far more dangerous that if she'd been awake. She'd be able to get away from him. Tell your father, father in law ( so, sorry I cannot remember I read the post several hours ago and decided to respond to the last one posted and also to yours at the last minute since it came to mind) that I said hello!

I hope there are no guns in the house. My husband had to remove the gun he kept in the bed room after I was diagnosed. The doctor said that it would be very dangerous for that gun to be in the room with me. If I acted out a dream of being robbed and grabbed the gun I could very well shoot and kill him, not realizing I was dreaming. We also keep the bed room door locked so I cannot run out. I also have to sleep with the bed next to the wall. I have heel marks in the wall, indentations at my home and my fathers home when I would kick the walls there too. The only thing we have to be concerned with are the windows. Does your father, father in law board up his window he's sleeping in? If not I would highly suggest putting something there to block it as I almost kicked out my bed room window dreaming and woke up in the position I was in the dream to do so. I'd like to hear more of the experiences he's had!

Gotta get back to the MJ trial....I'll be back on later!
 
Daredevel7 said:
My friend's father has the same thing, I think. He has choked his wife a few times in his sleep. The father takes drugs for it and it has drastically reduced the episodes, but not 100% guaranteed. The father now sleeps separately in a different room most of the time.
Click to expand...

I had to sleep in a separate room from my ex husband, he would crash around in bed so bad I would wake with my lip almost split or a black eye! You would think he was fighting for his life in his sleep!
 
whatdidyousay! said:
I had to sleep in a separate room from my ex husband, he would crash around in bed so bad I would wake with my lip almost split or a black eye! You would think he was fighting for his life in his sleep!
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A freind of mine had to do the same and she also kept their daughter with her after a scary experience that involved the daughter.
 
Wirelessly posted

I used to be violent sleeper but that went away when I turned into adult. (punch, kick, flail around, etc) only sleepwalked twice and I remembered it in dream I was seeing everything in blue tinted and kind of fish bowl-effect and dream images get blended in like in real life I was trying to open the locked door but I dreamed that I was trying to open a jar full of pennies weird huh?
 
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