Restless Head

[alisha0103]

Just something I think is funny...of course, my sister doesn't. She has problems when she sleeps; walking, talking, has even given her husband a black eye...but what cracks me up is that i always tease her that she needs to look into Restless Head Syndrome...she hits her head up and down on her pillow all night long. Her husband should put a brick in place of the pillow one night! Bet she'd stop...hehe. (I'm kidding...of course.)

[TxSongBird]

I suffer from a sleeping disorder along with the RLS called parasomnia. I do the same things your sister does and it can be very dangerous to her and her husband as she is thrashing about and she can injure herself or her husband. She needs to see her Dr. about this condition as there are medications to help control this.

Donna

[alisha0103]

Yea, all teasing with her aside, we have talked about that...I've advised her to see a doctor about it, but she doesn't have medical insurance presently so she doesn't have a lot of options. I believe she pretty much sleeps on the couch now. I appreciate the advice. She's looking for a job that will provide her with insurance.

[alisha0103]

I hope you who read this realize that I totally respect anyone with a sleeping disorder or RLS. I suffer from RLS myself. My sis and I just think of things on a more animated level not literally. When I say brick, I'm thinking of little birdies flying overhead like the cartoons. Honestly, I am trying to figure out this RLS and wondering if it is Psychological or not. I have no pain w/ mine and sometimes when I sleep I can make myself stop kicking and rocking if I lay on my back. But as soon as I fall back asleep I roll right back over (or so I'm told) and start kicking again. Seems like when I think about RLS alot...I'm worse. My doc has me on a muscle relaxer right now that doesn't do a thing, and an antidepressant that does less. A neurologist is the next step...Sept 15th...but wondering what good it will do. They'll still just give me all the meds that don't work. Does anyone just learn to live w/ it? I mean...those that don't have pain and need meds for that.

[TxSongBird]

Alisha I don't have medical insurance either as we are self employed and I have a very understanding and helpful Dr. who understands that things are expensive and gives me samples of the medications and cuts my bill in half since I pay cash. I don't believe that RLS is psychological it is neurological. They have proven that people with RLS suffer from not enough dopamine in their brain.

Donna

[alisha0103]

Maybe it will worth it to go to the neuro just to see if that is my problem. Guess I haven't been officially diagnosed...and this neuro visit will determine if I have RLS or something else. Good advice for my sister, I haven't had my doctor offer me one single sample. They would probably do that for her, though. I will definately tell her. Thanks very much. I've seen alot of posts on here about RLS (obviously) but nothing in regards to what we call her "head bonking". I was curious to see what responses I would get regarding this problem.

[cornelia]

Alisha,

until my I was about 20 years I used to bang my head on the pillow too. After that it stopped suddenly. I found it always soothing.
You can do some Googling for info under: rhythmic movement disorders

Corrie

[cantsitstill]

I have had rls as far back as I can remember. School was torture on me, sitting in class made my mind go crazy, trying to keep my legs still. I got in trouble alot for getting up.
I am almost 35. I have been on requip for about a 1 1/2 months, and that was an accident, my doctor happened to have the sample pack when I tried, once again, to explain my legs.
For the 35 yrs before taking it I somewhat learned to live with it, keep myself out of situations that would set my legs off. My mom tells me that she can remember giving me cough med. and I would stay up for days. Everyone thought I was just hyper, I am a little high strung.. lol.
I DO NOT take cough, cold, or sinus medicines.. I have learned from expericne that will make my life hell.
Living with my legs in a constant "panic" is horrible, not having a doctor believe what I am saying (because I can not really discribe it) is worse.
I think now my body appriciates the 4 hours of sleep a night, before it was no more than 2 hours at a time, some nights none.

[TxSongBird]

Here is how I described my pain and legs to my Dr. recently when I went to confer with him about some issues. I told him that I felt like I was a puppet on a string and that whoever was controlling the string to my legs, were pulling it taut and it made me feel like I had to swing, beat, twhirl and rub my legs. He said that I clearly described RLS in a nutshell.

Donna

[whaaatahh]

It feels like I need to do flying kung fu kicks on a brick wall till my legs explode. I dont try to do this because it feels like i would smash through the wall and not stop till the neiborhood is destroyed and also if the wall didnt brake it would just hurt. I do take martial arts now, I just wish they gave late night classes when my legs are in there "mood"

[Guest]

Yes when the restless legs kick in, I want to actually beat my legs to death. I have been known to sit in a chair and twirl them around in circles, rubbing them endlessly, and stomping around the house waking everyone up. With the requip I have to say I am not having the issues anymore.

Donna

[alisha0103]

Thanks Cornelia. I did some googling...it was very helpful. Now all I need is to convince my sister to go to the doctor!!

You all have different examples of what your RLS feels like. I would say all of the above. Mine feels like lots of nerves just jumping around in my legs, the only way to make it stop is to move. The only way for me to fall asleep at night is to lay on my stomach and kick my left leg till I fall asleep. But my boyfriend tells me that about 2 or 3 am I start kicking again. It is continuous till I get up around 6am. I never even know I do it. He said he use to just put his leg over my ankles to keep me still, but now I will shimmy out from under his leg and kick his. I steal his covers, I rock back and forth on my side when I'm not kicking, and I talk almost constantly. He also says I have gotten out of bed and walked around and he has had to put me back in bed, all without me knowing. He never complains, just mentions he's tired occassionally. I know it is because of me. I have started sleeping on the couch or in the guest bedroom just so he can rest, but he never says anything negative when I decide to climb into bed for the night with him, just "Sweet Dreams".

I hope and pray that one day we will all be able to log onto this site and have the same answer to the neverending question..."What works!" Until then, I feel blessed to have found you all and that I can have a place to go where I can talk about it. Because believe me...after a long sleepless night for both of us...the last thing I want to do is talk to my BF and remind him or ask him about what antics I pulled the night before.

[Walking After Midnight]

It's a shame that we can't "pool" our drugs that didn't work for us.

I have an entire bottle of Mirapex, Carbatrol, some Requip all just sitting here, I can't take em.

It's a shame that we couldn't send our drugs we can't take to a central location where they could be given to the ones who can take em and don't have insurance. Instead we have to flush them. Our FDA at work for us.

Alisha...good luck. Hope you get to the bottom of it and get something to help you.

[Penguinrocks]

Hi Walking,

A few posts ago, Becat had mentioned contacting your doctor to see if there is such a place. There very well may be, but no one had to think about it until this trial and error stuff with RLS.

Penguin

[becat]

Hi Randy,
Penguin is right.
There are many doctors that work in donation of services type of way. If your doctor does not know of one, ask him to call around and ask. Also you can ask your local pharmacy to see if they offer a service to donate unused medications.
The real problem is that if a bottle has been opened it is normally considered as unsafe to use by another person. But my doc knows me and knows that I lock up my medications when not in use. So he accepts meds and then donates them for the charity he works for.
I stopped filling those scripts that I know I will not use, so my donation slowed. But those of you that have to bulk order understand that you might have several months worth of medications, unopened that could be helpful to someone else.
I always ask the doc if they can use them. If the answer is no, I ask why don't you!? You might be surprised at the answers. I can prove that this bulk order is unopened, and as the company sealed it. Are you sure that someone couldn't benefit from a free medication.
I hate the waste and I know there are many that take the medications we all try. Someone after me might be able to use it. The unopened stuff is a bigger IF, because of lawsuits and such.
I was told not too long ago that cities didn't want us to flush medications. It's really messing with the water balance and some medications are not that easy to flush out of the system. This just increases my wanting to donate them. What should we do with them if we don't flush them?
Medications, trial and error in many ways.
Hugs to you all.