Head roll

[Tim63]

Hi ….in time I may be able to get my story out there but for now I am going to be a bit slow. I have some trust issues and to be honest I’m a bit terrified to be even doing this!… To start off I just want to say I believe RLS is real and I believe I have it. I think I have been misdiagnosed many times. Now this is not all doctors faults. No. Unfortunately I had no idea what was going on and since I believe I had this since birth I never knew it was a problem. I don’t want to get ahead of myself so I have my first question. I am currently 60 years old. When I was a child I never fell asleep normally…. I would do this thing that became known to my family as “rolling my head”. When I went to bed I would not use a pillow. I would lay on my back and roll my head from side to side in a fairly quick manner. According to my brother ( who slept in the same room) I would do this for about 20 minutes and slowly stop when I fell asleep. Did anyone ever have this experience or know anyone who did?… in all my years I have never heard of anyone else doing this. I believe I stopped rolling my head when I was about 12. Of course then I began shaking my legs.

[ViewsAskew]

Hi Tim63 - thank you for sharing your story.

I have not heard of that related to WED/RLS. When I was a toddler through early school age, I moved all over the bed. I'd wake up with my head where my feet should be, and so on. No adult would sleep with me. Covers never stayed on the bed. That stopped when I was a bit older, then the leg movements started as a young teen. I never had sensations in my legs as a kid, but I clearly had something going on that required my body to move.

It's a very strange and odd disease. So many unknowns so far.

[Tim63]

Thanks views….. my whole story is very long and very strange at times. Mostly because I had no idea what was going on. Somewhere around 8 or 9 years old I remember my mother used to see me shaking my legs and she would think I was nervous. At times she would actually hold one of my legs to sort of remind me not to be nervous. I also remember that I rarely fell asleep at bedtime. I would move around for hours. I know she was concerned but we were dealing with several other issues like my father having a stroke and a year long slow death that made my problems minor in comparison. To be honest I never even considered it a real problem. I simply did not understand. I’m not going to go into all the details but in hindsight I now realize I rarely got anything even close to real sleep. In the early 90s I began having severe panic attacks. Unfortunately I had some horrible experiences with a psychiatrist and so called medical professionals. I was being misled constantly. I’ve been on so many depression medications that were not even necessary. About 5 years ago I had a bad back ache and was prescribed norco. At the time I did not put two and two together yet but I just felt so much better all the way around. After I used up all the meds I felt awful again. My back aches came back and I got more norco. And I felt great again. I had no idea why. I discussed this with all my doctors and they more or lessed believed I felt good because it was a narcotic and maybe I had withdrawal when I stopped. I felt it was helpful for my (misdiagnosed) depression. I kept getting prescribed norco on and off for a while after that. I did not want to be on a narcotic so I tried many times to use over the counter medications for my back. During one period of about three months off norco I was feeling horrible and got another prescription of norco. I remember taking a pill and lying on my bed. As the pill kicked in it hit me… I was shaking my leg and then it stopped!!! You must understand until that very moment I had no idea why my quality of life was so much better when taking norco. I had just assumed it was a drug. The fact is I was actually sleeping!! And then I realized I was going to bed and falling right asleep!.. not shaking my leg for hours!!!! Ok I need to stop now.

[Tim63]

I really thought I would be getting more replies. Oh well. It is what it is. I guess I will have to find another way. This will probably be my last post.
I hear a lot of people describing their RLS symptoms as a creeping type feeling. That is not what happens to me. My symptoms are like my entire body seems to be expanding. Like I am growing. Like when Bruce Banner is turning into the hulk. And if I move around it goes away. When I was young I dealt with it much more easily then now. I just can’t do it anymore. I don’t have extra energy. And for me it is 24/7. Not just at night. All day every day. As I said in my last post that norco takes care of it 100 percent. There is no way I can deny this. I also realize we are in an opioid crises at this time. What a paradox!…. The thing that heals me is the exact thing that is killing our kids. I honestly hate this. So since this could very well be my last post I just want to say I wish you all the help you need. I know the struggle. Good luck and I mean it.

[Polar Bear]

RLS sufferers describe their symptoms in many different ways, buzzing, creeping, twitching, like ants creeping under the skin. A defining factor is that movement helps ease the symptoms. At least whilst moving.
Your description of feeling like your body is expanding I have never heard of before. You know that Norco works for you.

My own symptoms are 24/7 and are controlled by an opioid albeit at the bottom end. I take cocodamol at max daily dose and pregabalin. The pregabalin is actually prescribed for diabetic neuropathy but has the bonus of also benefiting RLS symptoms. I have no issues taking an opioid because without it my quality of life would be unbearable.

[Tim63]

Thanks bear
Buzzing is an interesting way to describe it. Like a vibration sort of. There is a prank that comes to mind. A joke to pull on friends. I don’t know if they still make them but it was a buzzer that you concealed in your hand and then you shake another man’s hand and it would buzz and scare the crap out of them. A common prank many years ago. Well that buzz feeling is pretty close. But as I said with me it’s also like an expanding feeling. Thank you so much!…. I am not opposed at all with taking whatever medication helps you. I just have lots of issues unfortunately that were totally unnecessary. And because of them I am terrified to take the next step and see a professional who specializes in RLS. When I began having panic attacks in the early 90s I was a young man who had no idea what to do. My family was not supportive. My doctor at the time recommended a physiatrist. I had no problem with that but I had no idea what they did. I just thought they would have me lay on a couch and talk or something. So when I went to the physiatrist she asked me to tell her what was wrong and I told her. After about 20 minutes she began to get upset with me. She actually started to yell at me . And loud!… I’m going to have to stop writing now. You must understand I had no idea what was going on. This story gets much worse. I’ll cut to the chase. You see I believed her. I went to a rehab place and within 24 hours the doctor told me I was not a drug addicted or alcoholic and that I was not suffering from withdrawal. The doctor told me to see a psychiatrist!!!!! You must understand I was a young man with a wife of five years who also had no idea what was going on. And we had all the money problems you would expect. And this was costing a fortune. From this point for about the next 2 or three years it was hell on earth. And it was getting down right insane. I was very religious at the time and one of the Decons at my church suggested that I had a demon. I’m not kidding. So here I am in bad debt with my wife losing faith in me doctors yelling at me and my God what else. I have to stop now but in closing let me say I did eventually find a great therapist who (in time) explained to me that my original physiatrist probably thought I was just faking my condition to get drugs. I didn’t even know they prescribed drugs!!!!!! …… Fast forward to today. My family doctor now is a good person. But she simply can’t help with RLS. SO I am terrified that I have to see a specialist who may not believe me. To all of you who have had similar situations I feel for you. My God do I feel for you.

[Polar Bear]

At present your issue is uncontrolled RLS. You say your family doctor cannot help with your RLS. You could start with discussing with her the link in my signature, as previously mentioned.

However you need proper expert help to sort RLS symptoms. Look what has happened to date, you' ended up on 12mg at one stage and are still on much too high a dose.
An appointment with a neurologist who specialises in RLS is the next step.

[Rustsmith]

I second Polar Bear's comment about needing to see a specialist. Your best bet would be to get an appointment at an RLS Foundation Quality Care Clinic. The closes to you might be the new one in Pittsburgh. I am not sure, but I have heard that Johns Hopkins only accepts Maryland residents now.

A word of warning, it often takes four to six months for a new patient appointment.

Another option would be to ask for a referral to a neurologist that specializes in treating movement disorders. However, before going to see that doctor, check his/her website to confirm that (s)he treats RLS and not just Parkinsons. If RLS is listed, I would then call and ask to speak with a nurse or medical assistant (not the receptionist). Ask if the doctor has extensive experience in treating severe RLS and more importantly, is willing to prescribe opioids for the treatment of RLS. I waited six months to see the most highly recommended neurologist in town. Her website and her staff said that she was well versed in the treatment of RLS. When I got there, she reviewed my medications and quickly said "I don't do methadone". My jaw dropped and I almost got up and walked out. I still see another neurologist who is 100 miles away for my RLS, but continue to see the local one for treatment of my migraines. Each time I see her, she asks about my RLS but has never volunteered to take over that portion of my neurological care. I wish is was illegal for doctors to cherry pick which conditions that the treat and which they don't want to treat when it is within their specialty, but that is the state of medicine in the US these days.

[Tim63]

Rustsmith…That is my biggest fear. The fact is now that I have had norco … Now that I know what life can be like with out that horrible feeling… I can’t go back! I am not necessarily saying I need opioids but why in the world would a doctor want to even try something else when this has worked tremendously for years now! Polar bear… After I realized that my legs were not shaking and I was getting sleep I went on the internet and found a something just like your link. Could you imagine my surprise when I saw it was from the Mayo Clinic! It was the most surreal thing I have ever experienced!…. I fully intend to see a specialist. Thanks

[ViewsAskew]

I really thought I would be getting more replies. Oh well. It is what it is. I guess I will have to find another way. This will probably be my last post.
I hear a lot of people describing their RLS symptoms as a creeping type feeling. That is not what happens to me. My symptoms are like my entire body seems to be expanding. Like I am growing. Like when Bruce Banner is turning into the hulk. And if I move around it goes away. When I was young I dealt with it much more easily then now. I just can’t do it anymore. I don’t have extra energy. And for me it is 24/7. Not just at night. All day every day. As I said in my last post that norco takes care of it 100 percent. There is no way I can deny this. I also realize we are in an opioid crises at this time. What a paradox!…. The thing that heals me is the exact thing that is killing our kids. I honestly hate this. So since this could very well be my last post I just want to say I wish you all the help you need. I know the struggle. Good luck and I mean it.

When mine is not controlled, the best way I can explain it is that I feel like my body is anxious - when you said it feels like it is growing, I immediately thought, "I wouldn't have said that, but I completely get how someone would say that." I say mine is anxious because when I am anxious, I move a lot, I cannot stay put, and it feels that way in my body, not just my brain.

The ways we explain it are SO inaccurate because there is no other thing in the world like it, so we all come up with the best we can. That makes it hard for many of us to "get" how other people explain it.

[buglegs]

I get the same feelings you talking about like anxious feeling insides when my RLS is active which has been daily lately. Its hard to explain the feeling kind of like insides are itching or something..nervous, anxious feeling like I just can't relax. The only thing I've found to help mine is to smoke some marijuana when the Requip don't work or makes its worse seems. I'm currently taking 3-MG Requip at bedtime but I believe I'm augmenting at this point. I just recently switched from 1-MG Mirapex twice a day to 3-MG Requip once a day..Mirapex has some serious side effects, weight gain, difficulty breathing, suffocation feeling and eye sight getting worse...I'm planning on stopping all the Dopamine Antagonist and try something else...Good Luck!!

[buglegs]

Also lately my calf muscles have been feeling like they swelling-up and burning, like on fire, especially at night and early in the mornings.

[Polar Bear]

*Buglegs* The burning in your legs makes me think of neuropathy. Have you seen your doctor about this.

You know that your 3 mg Requip for RLS is way too high, daily max being 1 mg. If augmenting you need to wean off the Requip... A treatment plan needs to be discussed. It is a difficult time but if you have an understanding doctor who will prescribe a low dose opioid for support this will help.
See the Augmentation Forum. Also the link in my signature.

[Tim63]

Buglegs …. Yes yes yes. A type of anxiety inside. And there is no doubt smoking pot helps big time. I have more to say on that. I need some time. Thanks to you all for sharing. You have no idea how alone and misunderstood I felt.

[debbluebird]

Mine is 24/7. Mine feels like electricity going down my leg and then the leg would jerk. I tried over 20 meds. Merapex, a DA worked sort of for awhile, then stopped. Then methadone worked great. I can no longer get that, so now I take buprenorphine. I also take gabapentin. Mine is now controlled.
If one doctor won't listen, go to another. Plus, not all specialist know everything either.