REM Behavior Disorder

[livingwith]

Hi I was diagnosed with RBD when I was about 14, I am now 22. I am a male and this disorder has been quite damaging to me and my house. I used to take clonezapam and it worked very well but I stopped a couple years ago because it made me always seem tired.
My dreams seem worse then any ive heard. I dont just move around in my bed or room. Ive been to the emergency room for jumping through closed windows. I Jump down full sets of stairs in one leap. Ive blown out 3 bedroom doors (Frame and all!!...Read the full article

[concernedmom04]

My 18 year old son is in the evaluation process right now but everything I read - especially your story - leads me to believe he has RBD and it scares me to death. When he was young...8,9 10 he had what we assumed were night terrors. Blood curdling screams and he would sometimes fly across the room or take off running down a flight of stairs. After many episodes and sleepless nights, He saw a neurologist and all doctors concluded he would out grow it around 12-14. While it seemed to be better, I know he talks and has occasional episodes. Most recently our dog slept in his bed, which is rare, and he said he woke up to find himself choking the dog. He was extremely upset. A few weeks later he had his long time girlfriend spend the night and she woke up because he was swinging at her and punching her. She was scared and he was completely devastated. His is a normally gentle person. He's very athletic but a generally passive guy. He feels like he is going crazy and is scared that he is going to hurt himself or worse, someone else. He too has crazy stories of waking to find he ran into our closet door knocking it off the track and I could go on, but now, the potential of hurting someone has him totally freaked out. Can you tell me what you've been told causes this and what he can do to help himself? My husband thinks he needs to have a super routine life - bed by 10 up at 6 every day and avoid overstimulation, but I know that in life that kind of "normalcy" isn't always possible so I am scared for him. Life is full of stresses - good and bad - he is in college - talk about stress. He plays football and is working towards a starting position - more stress - add a wife and kids some day and there it is. Is he supposed to crawl into a hole and avoid everything?? He never seems stressed - always calm and cruising through life - so this alter personality is freaking everyone out. I welcome any information or advice you have to offer. I just want him to live a normal life and not feel like he is destined for a psych ward. We do have an appt scheduled with a sleep specialist - but sometimes the best information comes from those who have personal experience. Thanks!

[strangesleeper]

Hey im a 22 yr old male - your story certainly makes me feel a little grateful for my situation. My RBD stops at beating up my wife and full conversations in my sleep with my eyes wide open. This happens in a bad week every night, good week 3 times. Waking up mid episode is very weird. I cant imagine how difficult it must be for you, you must be very strong minded. I have read melatonin supplements can help, but havent tried myself. Clonazepan and amytriptalyne had no affect what so ever on me. the thing that flips me out is that its like having a split personality, with no control or say over how the other behaves. Im most concerned about the harm i could do to the people i love the most. Not to freak anyone out but there is a case in the US of a man accused of murdering his wife whose defence was RBD. I am definatley not confortable in my own skin. whilst we still sleep in the same bed My sex life has completely disapeared as my partner has woken up with my hand around her throat. To compound our problems (not to be the bringer of bad news) but RBD precedes parkinsons and other Neurodegerative disorders in 33% (mayo clinic study). Im a little stumped on how to deal with this. Have you made any lifestyle changes that have had an effect, also do you have ADD or ADHD, im wondering if there is a link, as they are both related to dopamine deficiancies? i think.....

[concernedmom04]

Have you had a sleep study done. My son just had his and it turns out he does not have RBD (thankfully) just a disorder that the doc believes he will outgrown around your age! I pray he will. He has not had any major episodes since the last one - except he believes he threw his cell phone across the room and didn't know it until he had a vague memory of it when he woke up and found a broken phone! I hope you find something that works for you and I hope the doctor is right and he'll out grown this. As for lifestyle changes in the mean time, he's been told not to sleep with anyone - especially in close quarters (like a twin bed in a dorm!) or with the dog...anything than could unconsiously disburb him during sleep...which would cause him to react without knowing. Have you and your partner thought of separate beds or bedrooms? It sounds awful, but could save your relationship. He has been told to get on as regular a sleep pattern as humanly possibly (apparently this is key) and not be sleep deprived - another key. He does not have ADD or ADHD. He was also told to keep his sleep environment safe (no cell phones or breakable objects within reach or where he could step on them). All of his syptoms sounded just like yours but apparently his episodes are not during REM but rather during non-rem?? I hope the doctors are right! Good luck and thanks for writing.