REM Behavior Disorder

[patllib]

I have had this disorder for about three years. I currently take 2mg. of klonopin per night, plus some ambien if I awaken, and I usually do and can't get back to sleep. The disorder seemed to start after I had a kyaking accident in the ocean, and thought I was not going to live. The disorder seems to be getting worse. I am now supposed to take 3mg of klonopin per night, but don't think this will help. Any suggestions? I am really at my wits end with this.

[cbstotts]

I just joined in and am not about to read everything so I will just put my problem on the table and hope for replies. I suffer due to lack of stages 1-4 and go directly into REM even before I am asleep. I wake up more tired then I went to sleep. My biggest ordeal is dealing with the dreams as I am coherent to the dream but can't move. I also suffer the affects caused by the lack of rejuvenating sleep that was deemed idiosyncratic Narcolepsy. Over the years I have developed ways to wake myself up, but is exhausting and screws with my psyche. I do have the remedy, at least for me. I am looking for others who share my disorder.

[patllib]

What is your remedy? I would like to know what is causing this disorder in the first place.

[cbstotts]

First of all I would like to be sure you are a candidate in that you suffer as I do. Narcolepsy in that you have no control over the sleep cycle. I have suffered this ailment for 27 years. After time-lining the severity of my symptoms and experimentation I have my cure. I tried to go public 4 years ago and got no response. I have been free of sleep attacks, have not taken any prescriptions, and would appear to be completely cured while on the remedy for 8 years. I have not confirmed this remedy with anyone else so I don't know how it will work with others. I do know, if you suffer as I do/did you will try anything to correct the problem. I do know, if it works for you, you will reap the benefits the first night getting better each day. By the third night you will be good to go, the results are that evident. No more amphetamines or headache drugs.

[patllib]

I do not have narcolepsy; I have REM sleep disorder. Sounds as though we are not on the same page. Thanks for the reply.

[gebj]

It seems the docs just want to continue to add more medicine. I personally don't know how you could function taking 3 mg of klonipin a night. Do you work? Do you find yourself so exhausted all of the time. This disorder is maddening to me. It seems so rare, you are the firstperson I've found with it. I know what you mean about being at wits end. Maybe if we communicate with one another, it may help.,

[gebj]

I have had 8 sleep studies, I am diagnosed with REM Behavior Sleep Disorder. Would you like to include me in your support group? Where do you live? This disease is defined by me as "maddening". It is horrible. Doesn't seem like much progress has been made since I was diagnosed 4 yrs ago this week.

[patllib]

I think I have built up a tolerance for klonopin. I also was and still occasionally take an ambien in the middle of the night if I can't get back to sleep. Lately I have tried not to take the ambien and do not seem as tired during the day. But, I wake up during the night, and my sleep from then on is on a pattern of sleep/wake-up until I do get up. The klonopin has stopped my nightmares for the most part, but I still act out my dreams on occasion. I talk, kick, thrash, and will try to get out of bed once in a while. My husband must sleep with one eye open, because he seems to be able to sense if I am getting up awake, or if I am still asleep and trying to get up. Usually it is to get away from some situation. I rarely have good dreams. Do you take an anti-depressant? I think this was caused by Wellbutrin, or from my near death experience. I was flipped from a kayak in the ocean, and didn't think I could make it to shore....I did of course. I am pretty sure the screaming started after that incident. Before that I fell out of bed so many times trying to flee from my nightmares.
Tell me about your experience with REM. When did it start. Do you take anything for it? Thanks for the interest.

[gebj]

I also have REM and would very much like to have someone else to talk with about this horrific disorder. Would you be interested?