I need serious help
[Sleepnet.com's Homepage] [Sleep Disorders] [Sleep Links] [Search]

I need serious help

[ Follow Ups ] [ Post Followup ] [ Restless Legs Forum5 ] [ FAQ ]

Posted by mikeyb on January 18, 2007 at 17:44:05:

I am 30 years old and I have Cerebral Palsy. I have had RLS for as long as I can remember, but noticeably since age 18. I have finally reached the stage in my life where I cannot handle the pain day to day anymore. In the past I have always just grit my teeth and went on with my day, putting on fake smiles and such. My RLS has reached the point where it is keeping me up all hours of the night. I am lucky to average 4 hours of "restless sleep".

Approx a year ago I decided to give medications a try to see if it would help. I did alot of research about RLS and Cerebral Palsy and spastic diplegia. With the knowledge that I had; I went to my doctor and explained the situation and was given the suggestion of seeing a neurologist specialist. Well I did that and it turns out that I have some messed up nerves in my spine caused from my back protruding when I walk. Now comes the good stuff :) The specialist suggested heavy medication during the day and at night along with the recommendation of immediate surgery. When my doctor received this report he asked me if this is what I want. He knew what I was going to say before he asked. There was no way I could permit an operation on my spine and central nervous system while I am still mobile. After talking it over with my doctor we decided that medication may be better than surgery at that point. I was given:

backlofen 10mg (take 3 at bed)
mirapex .25 (take 1 at bed)
and initially Nitraspam (to sleep)

For the most part the backlofen and mirapex do work for the muscle cramps and spasms. My problem is that even with taking these medications I cannot fall asleep. Since that time I have tried multiple sleep medications including:

Zopiclone
Trazadone
Oxazapam
and clonazepam (current)

All of these sleepers fail to help me. I could lay awake in bed for hours, tossing to get comfy.

I met with my doctor today to try and finally resolve this with possibly stronger meds (I should mention that I am 6'2 250lbs). He contacted the pharmacist yet again and was advised that there is nothing else that can be done for RLS. I was told that RLS is a very unknown disease (if I can call it that) and there is no real treatment. He mentioned that the one of the side effects of Mirapex is insomnia!

I am at my end with the fatigue, pain, discomfort, the stress of having to tell my girlfriend that I dont feel up to doing something that I know that she really wants to do.

I would like to know if anyone on sleepnet can give me some advise on what I could do. Just so we are clear, I want to be able to sleep 6-8 hours a night and not have symptoms of insomnia. I do not take any medications during the day and I feel great if I get a good nights rest. I have tried everything including Homeopathy methods (bath, tea... ect) and absolutely nothing works.

My doctor told me that he is going to talk with another pharmasist tomorrow and contact me tomorrow.

Please help me and give him some sound advise that we could use. I am almost at the point of going for surgery and there is a chance it could get worse after surgery.


Mike

Follow Ups:


Post a Followup

E-Mail  :  required (will not show up in posting)
Password:  required (sent to you when you registered)

Subject : 

Comments:....note: including your email address here will result in the removal of your posting (See removal policy)

PLEASE ONLY CLICK THE SUBMIT FOLLOW UP BUTTON ONCE!!. Thanks, Sandman

[ Follow Ups ] [ Post Followup ] [ Restless Legs Forum5 ] [ FAQ ]

WWWBoard 2.0a and WWWAdmin 2.0a © 1997, All Rights Reserved.
Matt Wright