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Sleep Disorders Community
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Avatar universal

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!
155 Responses
Avatar universal
yes, my 37 yr. old husband & 7 yr. old daughter sound exactly like you and are both highly functioning, well adjusted individuals! My husband sought treatment 10 years ago ( he also shores loudly & has sleep apnea). The doctors said the rocking & rolling would stop with the use of a c-pap machine (it has not). I swear my daughter started as soon as her neck muscles started to develop. She's healthy in every way but I worry how this is going to affect her. My husband is a nightmare 2 sleep next 2. I constantly nudge him to stop.
1 Comments
I am 14 and have the same problem as your daughter mine started when my neck muscles started to develop as well just recently have I began to worry about my case seeing as a few years ago my pediatrician told me I would grow out of it and sadly I still have not i wish you and her the best of luck if ever you were to get any information on a treatment or aid i would love to know cause i simply cannot find any online
Avatar universal
Have you had a sleep study? I did not have movements as you describe, but do have Periodic Limb Movement Disorder with very rythmic movements. Also have sleep apnea. It could help to know exactly what you're working with.

To goodshepherd, if your husband is established on cpap for his apnea, it could benefit him to get a repeat study. If a person has multiple sleep disorders, the picture can become clearer after one is therapeutically treated.
Avatar universal
Hi, how are you doing? I do understand how frustrating it would be not to get good sleep and the discomfort due to Rhythmic movements like banging head or sometimes limbs during sleep. These movements tend to occur during the stage just prior to falling asleep and typically increase along with stress levels. These are most common among very young children; rhythmic movement disorder is usually followed from a comforting habit, might be one similar to thumb sucking. Children often outgrow the behavior, but if head banging/limb movements present a danger or the activity persists for long time as in your case, it is better to consult a Neurophysician and get evaluated. Most important thing is to overcome the mental and physical stress by doing yoga, meditation, regular stretches/exercises and massage. Take care and keep updating us of your doctor advise.
1 Comments
I was told years ago that I had Rythmic Movement Disorder. BUT I also have an ADD diagnosis and am on meds for it. When I insisted that I wanted to try additional meds for headrolling, I got resistance. However, after many tries, I was given a MED THAT WORKED FOR ME. Be prepared, its a med for psychosis. IT IMMEDIATELY STOPPED THE HEADROLLING. I took it for six months only. When I came off the med, THE HEADROLLING NEVER RETURNED. That was 13 years ago. I am now 49 years old. Do I have psychosis?  No. Mood disorder? No. Autism? No. If you decide to mention it to your Doctor, be prepared to hear all the reasons why it is not for you. Do be aware that to be on it for decades can cause neurological side effects, so do your research for any potential risks for you personally. A psychiatrist is the best qualified to help rather than your primary care doctor. Thorazine (generic: Chlorpromazine) is the medication. My Doctor,to his credit, was willing to try an unconventional drug that is unrelated to ADD. For whatever reason it worked, it changed my life and my family's lives.  Blessings to you.
Avatar universal
Sadly, I too have had these problems for as long as I can remember.  When I was an infant, I would get into a doggie style position and bang my head so violently into the wall that I would put holes in the sheetrock.  As I got a little older I would lay on my back and turn my head to and fro also violently.  I had deleloped scabs and then scars on both sides of my chin.  Now I am 47 years old and I lay on my side and rock my legs back and forth to fall asleep.  I am very fortunate to have a wife who understands, she is confused as I am also, but she doesn't let it bother her.  If someone could explain this disorder to me I am willing to post my email address ... ***@****  Thanks for any help.
Avatar universal
I am so glad I found this site.  I am 33 years old and I rock back and forth and hum, I do this most of the day, because it is very relaxing, and most of the time I do not know I am doing it unless someone tells me.  I also bang my head, which has changed a little and I rock from side to side to get to sleep.  The only time I bang my head now is when I am sick or really tired.  I never knew there was a name for this, I thought I was the only one in the world, and I was frightened by this, but know that I know there are other people out there, who either want to stop or have accepted this behavior, I feel great.  I do feel alot better about my self.  Thanks so very much!!!
Avatar universal
I'm 31 now, used to headroll for about 27 years. Finally I just stopped and it worked. It sure has something to do with soothing, probably ADHD too - I can't really tell. I also suspect it has something to do with early neglet and rejection - this way kids vent their anger and seek attention. Sad, really. It's quite shaming for someone who wants to be the "perfect human being" - it's hard to find any acceptance (especially when you keep it top secret)
Avatar universal
hello im an a 12 year old and has suffed this since i could remember and now i it is taking huge effects on me.... im going on a school trip to france soon and i have to share a room with all my friends. I dont know whether to tell them or just stay a wake all night... if any one can help it would save me from bieing the laughing stock of the school
1 Comments
i understand .... i am 14and have had this condition since i could move my head as well  try staying up really late this may make you tired enough hat you may just fall straight asleep
Avatar universal
I am 26 and I have this same problem, i lay on my back and rock my head and legs violently back and forth, it use to put me to sleep, now it keeps me awake longer, it also takes about 3 to 4 hours of my night. I have resolved to drinking, which use to help, but now it just makes it worst. Sometimes i can bare sitting still, especially in a strange place, but it torments me. I hope some one finds help for this, ive tried counting sheep and relaxing which works but soon as i fall asleep im awaking with the urge to rock....HELP ME!!!
Avatar universal
I Remember being as a very youngchild of around 3, extremely frightened of the loud and violently physical arguments and fights of my parents.Im not sure if head shaking came first or was as a result of these arguments, but it certainly was dual purpose,it blocked out the niose of the violence so I couldnt hear it as well and also soothed me.I carried this well into my late teens,early 20s, until I started to take control of my daily life and realise my potential for life. It was linked with my persnal feelings of inadeqaucy and insecurity.Realising this  enabled me to stop it, but it was  forced and prolinged proceedure, and tok maybe a year in total to stop the "need" to do it.It wasnt easy as I was, in a way, addicted to the soothing feelings it gave me. I have moments to this day however, where I will rock and instantly feel soothed  and Im now 42 years old!. I believe strongly that this is a stress related condition, at the very least for me. Good luck!! Derek, Uk(now norway)
1014526 tn?1251062128
Hey. Im 13 and i unfortunally have the worst type of RythmicMovementDisorder, were i sway 24/7, awake or asleep. Ive got no cure.
If you read the bit about me, it explains everything. Thanks :) x
Avatar universal
im 18 years old and have been head banging since i was about 2 or 3 i think maybe younger .. but i bang my head to the beat of music to put my self to sleep which can take up to hours depending on how tired i am .. also if my arms ache i will turn on my back and rock my head side to side i also sometime get on my knees and do it .. it sounds strange i know but until about a year ago i never even new this thing had a name and i thought i was just weird .. i always find my self doing it when im distressed or tired or bored i will just go to my bed put my headphones on and get on with it ... i dont think that there is a cure for it unless you get therapy .. but im so releived to know theres others who suffer aswell
Avatar universal
I think my 6 year old son sounds like alot you here I thought he would grow out of it... But not as of yet. Was going to take him to the doctors. But it sounds like that there is not alot they can do for this RMD thing... Can I just ask for prayers since God is the Great Physician. Thanks.
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