Rhythmic Movement Disorder, Can't take it anymore

[suziecue40]

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!

[goodshepherd]

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.

[hailtodisco1210]

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

[KatEyes]

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.

[Suri123]

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.

[LisaWileman]

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.

[MickyNoThumbs]

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.

[heaven99]

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!!!

[Spinoza]

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)

[d_the_man]

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

[hailtodisco1210]

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

[jay4457]

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!!!

[delboy314]

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)

[CourtneyJade]

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

[nataliel18]

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

[iamlegend28]

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.

[dprinceton4]

I had absolutely no idea other people had this. I've been "rocking" since I can remember. I would rock so violently on my hands and knees my bed would move around the room. To get me to stop my abusive stepfather would stick pins in my buttocks at the age of 4-5. I would lurch forward hitting my head on the headboard. To avoid the pin I began rocking laterally. I was regularly tormented by my stepfather. My mother finally left the jerk, but suffered a nervous breakdown after he held a gun to her head shortly after leaving.

While staying at my grandparents my grandmother would come in my room to try to shame me to stop. "No one will ever marry you if you keep rocking!" I would keep trying to make as little noise as possible by moving just one leg at a time. In college I would just wiggle my toes (and shake my leg a bit). When no one was around I would rock like mad! It's crazy, but up until recently I would still rock and always shake my legs. My partner is incredibly understanding. I don't think I would be so understanding!

On an related note - I was diagnosed with ADHD last year (2009) at the age of 46 and now take 35 mg of Ritalin per day. My legs don't move nearly as much. My brain is much quieter and I can remember seven numbers forward and backward like most "normal" people. My doc says my ADHD symptoms are almost gone.

Rocking definitely was a self-soothing way to get to sleep. The stress and madness would go away. The chatter in my brain would disappear. Only the rhythm filled my head. My mom said I was not neglected. She said she rocked my and held me often. I don't know what causes this and would love to know. Who of you were abused emotionally or physically, have ADD, ADHD or autism? I'm gay, but I doubt that has anything to do with rocking, but then again my grandmother said I'd never get married...

I'm facinated to learn other people have this condition.

[ana333]

Hello,

My son is 20 months old and for a while now he has been rocking and banging his head. It usually happenes when he is bored, or drowsy, or asleep in his crib. My fiance and I have become very worried because the banging seems to get louder and louder and we are afraid he might hurt himself. At first his daycare instructor told us he was above average on where he should be for his age but she was very concerned about the rocking and head banging, she kept telling me he could be autistic. I have worked with autistic children and adults for many years and besides the rocking and the head banging he has no other signs. At this point we arent sure what we should do. From what Ive been reading and from what alot of people on here are saying this could be something he could have to deal with for the rest of his life. Does anyone have any techniques or ideas on how to help him to get past this or to help keep him safe???
Thank You,
A VERY concerned Mom

[mmills675]

Hi, you may want to discuss this with another Doctor. It sounds like you may be experiencing nocturnal seizures. You may need to under go a sleep study that involves a more in depth look at your EEG activity. Best of luck to you.

Melissa, RPSGT

[LizardKinngg]

I have read these testimonies and still cant believe other people have this disorder. The reason I started was a fear of the dark at a young age (maybe around the age of 4). My mother had the same disorder but lucky kicked it before the age of 30. The problem is that it becomes involuntary when I sleep and I have worn down and broken beds. RMD for me includes rolling my body or head back and forth ( sometimes violently) and I rarely make a moaning or humming sound. It has pissed off most of friends when on sleep overs or anyone sleeping next to me. The sensation is complete relaxation and I have become almost addicted to this disorder. I am 20 years old and It needs to stop. Its just too weird.

[sweetbabyboy]

Ana333, I'd like to stay in touch with you about your son. My son is 3 years and 3 months old. We will have an EEG preformed soon. We don not have a diagnosis of RMD yet, but from what I've read, this is what he has, to a T. It is not really "violent" head banging, but he rocks to sleep and in the middle of the night, and when he wakes up, and in the car. Sometimes on all fours, sometimes just head banging on the pillow or mattress, and always "moaning". We call it his "pow-pow". We are so used to it since he was an infant and kept being told he would grow out of it, but are finally talking to the doctor about what we can find out. Please feel free to e-mail me at ***@****. Thanks!

Stephanie

[danib100]

I'm in total shock! I have a 16 month old son who has RMD and I was told he would grow out of it by the age of 3!!! I'm at the end of my tether as it is and to see people in their 30's and 40's who still have this has made me feel sick. I have had 1 nights sleep since hes been born as the constant banging all night keeps the whole house awake and he does it in the day too.  He's as bright as a button and seems able to function perfectly well on 2-4 hours sleep a night which I find impossible. Is their any hope? and hows he going to be in later life? can anyone recomend a specialist anywhere in the country for me to contact? He's on meletonin drops at the moment but they don't work and I just don't know what to do, any advice or support would be a great help.

Dani

[dprinceton4]

Dani,
There IS hope!!! Most children DO grow out of it by age 3. You still have 20 months before you have to worry. RMD is very normal at 16 months!!!  Even if he were to not grow out of it, RMD is a VERY minor sleep disorder. I've read that it could be assoicated with ADD, but I don't know if that's been proven. It sadden me to read that you feel sick knowing that people have RMD in their 30s and 40s. I kind of feel sorry for you that you can't accept your child's rocking. I'm sure he senses your displeasure and who knows how that will affect him later in life.  I'm curious, does he rock while he falls asleep in your arms?

[pelmel]

My 18 yo son has this disorder and has shattered cribs and beds. Last year we stayed in a hotel with tempurpedic type (memory foam) mattresses. He didn't bounce. He now has a memory foam pillow that he takes everywhere he goes. We also put a memory foam topper on his bed. It has really cut down his "bouncing". He has the form of RMD where he bounces his head or bangs his head against the bed. There is no rebound with the memory foam so he bounces much less.
This may not help all of you, but it may help some.

[nettm08]

i was also doing like this before going to sleep i move my head to and frow motin it was very relaxing ,and i was having this symptoms from less then one year of my age.to prevent me doing so my parents tooked very harsh decison but i never left it.

TREATMENT-It is not medical one could remove it by making control on himself.people should go to sleep when they really needed otherwise they will passs their time on the bed by doing this
2.these type of people shold be slept in group so that they feel shy about this and they will left i have remove this practice because when i reached to hostel for education then i was being crowded by my friend and then one day without trying much this bad habit left me
I PERSONNALY REQUEST EVERYBODY PLEASE DON,T LEAVE HOPE TRY AND TRY AND U WILL LEAVE THIS BAD HABIT


MY PERSONAL LIFE-I M VERY GOOD IN ACADEMIC I HAVE MANY FRIEND AND IM RESPECTABLE IN THE SOCIETY AND WELL BALANCED IN BEAHVIOUR SO I WOULD REQUEST EVERY PEOPLE PLEASE DO NOT LOOSE HOPE U CAN DO IT U CAN DO IT

[stumpy666davies]

I've had this since I was 3 years of age maybe earlier, I'm 23 now. My head banging effects my sleep, has destroyed several of my relationships, caused my family to hate me, made me turn to drugs to try & solve this & pretty much destroyed most of my life.

I found something that helps to stem the regularity & amount of time I do this, not sure if it means anything but it's an illegal drug & gives me a similar comforting feeling to the head banging.

I hope a  GP/Physician/Psychiatrist sees this & can shed some light as to why this specific drug helps, The Drug is MDMA (Ecstasy).

[HeadbangerSweden]

Hi,
My skills in the english language are quite poor,  but I hope my writing is understandable.

My son, 3,5 yo has RMD. We have done the sleepdeprivated EEG,  the sleepover Video- EEG and a second sleepover to check the breathing in the hospital.
All the tests were OK. Now the neurologists tell us that it it RMD, which we have said all along. It should disappear at the age of 4-5, they say :-)
They  have remitted us to a childrens psychologist and say that RMD is a behavioural problem.

Could anyone with RMD tell me if you experience some kind of pressure to your head.
Is that why you get such a sensation while bangning your head ? Maybe something happened to your head when you were born, which create pressure in your head/brain.
Or do you think its only stress-related ? A kind of way to release stress-related tension ?

Kind regards
Headbangers dad
Stockholm, Sweden

[bizter]

I'm 24 years old, and I'm so relieved to have found this thread. Ever since I was a baby or toddler I've been "rocking," and I didn't think there was a soul in the world I could relate to.
My parents tell me that I broke two cribs with my violent headbanging and rocking (I would get on all fours, and rock back and forth, hitting my head against the crib and shaking the crib so much that the screws came loose).
I don't headbang anymore, but I still rock, and it's really awkward when other people see it.
I sit "Indian-style" (sitting upright on my bed, couch or floor, with my legs folded), and rock slightly back and forth. Sometimes I do it when I'm awake (watching tv, reading, etc), and don't notice it until someone points it out; sometimes I do it before I go to bed (as a comforting thing); and sometimes I do it in the middle of the night WHILE I'm sleeping (which I didn't know I did until I was staying over my aunt and uncle's house, and my uncle came rushing over to me in the middle of the night because i was sitting upright and rocking back and forth!!! -- must've been quite the sight, but he was really scared).
It doesn't really affect my life (I've graduated from college and work two steady jobs), but to my family, it's always been one of my weird "quirks," and I feel somewhat validated that I'm not the only one.

Regarding those who have other diseases/psychological issues: I've suspected for quite some time that I have ADHD (both my brother and mother have it), and I have difficulty concentrating, as well as a very, very bad memory.