RLS sufferer since 1999 - new member

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Mister_Ed
Posts: 18
Joined: Fri Jan 22, 2016 6:24 am

RLS sufferer since 1999 - new member

Postby Mister_Ed » Sat Jan 23, 2016 8:24 am

Hi all......hope to learn and share thoughts about RLS.

I posted some info in the medical treatment area hoping to hear if others have heard of Deep Brain Stimulation or placing a morphine pump into the body which injects morphine directly into the spinal column. This procedure is receiving rave reviews by RLS patients in Sweden.

I will try anything to get relief. I'm twitching nearly 18-20 hours a day now. Lost a great job because the lack of sleep was keeping me from work. Even burned 240 of advance sick leave having sleepless periods extending frequently into 50 and 60 hours. Mirapex helped but got to very unhealthy levels and got "hooked" on lottery scratch tickets. Please be careful of compulsive behavior while on that drug! I spent close to $40,000 in 2 years on them. I couldn't sleep so up to an all night store to stand there and scratch tickets for hours. Even drove 2.5 hours just to play slot machines for 3 hours and drive another 2.5 hours back. No one likes having a spouse over-looking their shoulder but please, please let them help. I am certain I would have burned even more money if the wife didn't take away my access to my own funds. I hated her for it but now, I see it was tough love.

Looking to try medical marijuana but live in a no-marijuana state, Tennessee. Again, thanks for having me in the group.

Ed

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: RLS sufferer since 1999 - new member

Postby Rustsmith » Sat Jan 23, 2016 10:59 am

I remember hearing a question about DBS asked of one of the experts that the RLS Foundation uses for the webinars at the end of their formal presentation. I believe that it was the webinar presented by Dr. William Ondo in July 2014, but I am not sure. If you are a member of the Foundation, you can access each of these webinars on their website, www.rls.org.
If my memory is correct, he was in agreement with your surgeon that this was too radical for RLS patients.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: RLS sufferer since 1999 - new member

Postby badnights » Sun Jan 24, 2016 6:45 am

A few years ago I came across a case study of DBS helping an RLS/WED patient. I have found the abstract - seems like she still needed meds, but overall less meds:

Movement Disorders, Volume 27, June 2012 Abstract Supplement
Abstract of the 16th International Congress of Parkinson's Disease and Movement Disorders, Dublin, Ireland - June 17-21, 2012
Movement Disorders 2012 Dublin, Ireland June 17-21, 2012.
http://www.mdsabstracts.com/abstract.as ... &id=100303
Globus pallidus deep brain stimulation for refractory idiopathic restless legs syndrome
Ondo, W.G., Jankovic, J., Jimenez-Shahed, J.
Objective
To report the first case of globus pallidus internus deep brain stimulation for a patient with idiopathic restless legs syndrome (RLS), with an emphasis on GPi electrophysiology in RLS.
Background
Restless legs syndrome (RLS) is a sensory motor disorder with an unclear pathogenesis. It usually responds to dopaminergics and other medications but in rare cases can be extremely refractory. Deep brain stimulation (DBS) of the Globus Pallidus internus (GPi) is used to treat dystonia, Parkinson's disease, and is reported to help several other hyperkinetic movement disorders. There are reports of RLS improving when GPi DBS was used to treat another concomitant condition, but it has never been attempted in idiopathic refractory RLS.
Methods
We report the case of a 54 year old Caucasian female with a 40 year history of RLS that was treated with GPi DBS for severe RLS. Symptoms became marked around age 45. She had intermittent and transient benefit from different therapies over time but now was refractory to five dopaminergics, three opioids, several benzodiazepines, gabapentin, pregabalin, and intravenous iron treatments. She now had almost entire body akathisia throughout the entire day but for many years it was isolated to the legs in the evening and met criteria for RLS. She also had anxiety and depression. The patient underwent a bilateral GPi DBS.
Results
Single cell recordings in the GPi demonstrated a unique, fairly rhythmic 1 Hz firing pattern that was dissimilar to that seen in Parkinson's disease or dystonia. She experienced good but not complete control of her RLS symptoms over the following 18 months. Concurrent medication use waxed and waned but was reduced compared to baseline. There were no complications.
Conclusions
Recording of the GPi demonstrated a unique pattern, and stimulation resulted in a better response than any other therapeutic option in this patient. It too preliminary to recommend this aggressive approach for refractory RLS but the clinical effect does suggest that this anatomy is involved with RLS pathogenesis.
Keywords
Deep brain stimulation (DBS),Globus pallidus,Restless legs syndrome(RLS): Pathophysiology,Restless legs syndrome(RLS): Treatment
To cite this abstract, please use the following information: Ondo, W.G., Jankovic, J., Jimenez-Shahed, J.; Globus pallidus deep brain stimulation for refractory idiopathic restless legs syndrome [abstract]. Movement Disorders 2012;27 Suppl 1 :1225
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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