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Rhythmic Movement Disorder, Can't take it anymore

Hello,

Is there anyone, I mean anyone, out there that has rhythmic movement disorder? I have been violently thrashing my body and head, laterally while asleep or mostly somewhat asleep since I can remember. I am 30 now. It use to consume maybe an hour or two a night but now it is getting drastically worse. I find myself doing it or am told that I, "rock", 4-5 hours a night. Apparently kids grow out of this and the remainder that carry this disorder into their adult lives are autistic or mentally challenged, which I am neither. My doctor prescribed me clonazepam, which does not work and I'm not taking an addictive, benzodiazepine for the rest of my life.
Does anyone relate to my problem and if so what treatments have worked for you? I'm going to go insane!
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865346 tn?1239272490
I posted some 4 years back to this thread and just found it again!  I still have 3 that "rock".

12 yr old, 9 yr old and a 5 yr old. All three have autism and all have rocked literally a few days after birth and since then!

The most violent one is the 5 yr old who has numerous bruises from rocking (the now 12 yr old used to be the worst and was black and blue all over the side of his face, but hes since slowed (possibly the double bed so he cant reach walls helped!) so now the 5 yr old is the worst, bashing his head side to side into anything that's near him and feels so pain. His is mostly when hes awake and starting to get tired, he rocks probably a total of about 4 hours a day while away and a good 4 hours during his sleep - rather exhausting for him as you can imagine! We have come to accept it and not stress anymore. I do hope it disappears one day and if it doesn't I hope he ends up with an understanding partner!  I never worked out the cause, all my 3 vary from intellectual disability, right up to the 5 yr old who they think is gifted and extreme IQ, so theres no correlation there - the only thing they have in common is that they all have sensory disorders that are quite extreme - any one else found they have significant sensory issues?
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Avatar universal
Hello, I'm 15, almost 16 and I have have rocked on my knees and elbows for as long as I can remember. I am desperate for a solution to this now health endangering condition, as it affects my violin playing, which I so hope to be my future career. I have continual backache when sitting incorrectly and during playing the violin. My ankles have previously been at risk as well as my neck. These places of my body are, as I have found, the most prone in my rocking position. I worry seeing adults in their 30's and 40's still with RMD and would give anything for a cure! I have tried forcibly lying still, but as most of you will agree it leads to little sleep and even sleep deprivation which in turn can revert back to rocking. Even if I manage to stop rocking when awake, I still reckon I do it subconsciously when in a light sleep. Can any1 help? If so email me at -----   ***@****
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Avatar universal
Hi my name is Kirstie I have the say problem I rock my head side to side I use to rock on my hands and knees till I was about 10 but now I lay down and rock my head side to side and t the only way for my to sleep I find it very hard to stop but I don't no how to stop I no wt u mean ppl think u can grow out of it but I'm 18 and I still do it any help
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Avatar universal
Hey there, like most you guys i have had this disorder for as long as i can remember and am now 26. When i was a kid and i started head banging my mom would just put her hand on me and talk in a calm voice and it would stop and i go to sleep. As i grew older i discovered that i get the urge when i sleep in certain position so i suggest find your position guys.

I'm a Civil Engineer by profession, have a good job and function normally so people don't make those who have feel like a weirdo or think they won't amount to something coz we are pulling through. I still head bang from time to time when stressed but like another article recommended i sleep listening to natures sounds like waves and stuff and it works for me.

Best of luck to those who have this disorder and i hope you learn how to leave with it like i have and to parents with kids who have it just treat them like they don't have it and don't get stressed much by it.
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Avatar universal
I am 13 year old male I have done this since I can remember I do it nearly everynight. I'm scared that when I grow up and have to sleep with a woman its gonna effect my relationship does anyone have any solutions or treatment for this I would apreciate it A LOT PLEASE SOMEONE HELP!!!
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Avatar universal
I've been rolling in bed my whole life as well (47). Started out as a going to sleep thing but evolved into that plus a listening to music thing. I have spent whole days rolling to music when I was young. It's a great way to escape and come up with great ideas. I have always thought of it as a type of meditation/creative thinking activity.
Down side is, everyone thinks your nuts! So when I started sharing the bed with girlfriends and then the wife I stopped rolling myself to sleep and only rolled to music when I have opportunities, pretty rare these days. The wife dosent care, just laughs.
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