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Transcranial magnetic stimulation--anyone know about it?

Posted: Sun Oct 25, 2015 5:22 pm
by needhamal
I have severe, debilitating RLS that has been unresponsive to Clonopin, Pramipexole, Ropinerole and Lyrica. My sleep doc (for good reason) would like to avoid putting me on an opiate. I am in desperate search of a cutting-edge treatment but am now realizing that my Rx options are closing on me. I've read a couple of recent studies (one from Belgium and one from China) showing good results from the use of transcranial magnetic stimulation, which involves low-dose exposure of the brain to magnetic energy over the course of two-plus weeks. I haven't seen anything suggesting that this is being used or studied for RLS here (I found nothing on clinicaltrials.gov). Does anyone know a doc/research center that is doing this either experimentally or off-label??

Re: Transcranial magnetic stimulation--anyone know about it?

Posted: Sun Oct 25, 2015 6:18 pm
by Rustsmith
The International RLS Study Group had a meeting in California this past week to discuss research progress. You can see the notes from the meeting at http://irlssg.org/wp-content/uploads/2015/05/RLS-Science-Summit-abstracts-ver100915.pdf,

The only presentations that specifically mention trans-cranial magnetic stimulation are by authors from Germany, China and Italy. However, there might be something to a presentation by Dr William Ondo that might touch upon the subject. He has done research in this area in the past. Dr. Ondo is located in Houston. If you are interested in contacting him, send me a PM and I will let you know how to reach him since he just left the University of Texas, but is still doing research in Houston.

Re: Transcranial magnetic stimulation--anyone know about it?

Posted: Wed Jan 20, 2016 4:28 pm
by Icnflms
Hi Needhamal,

I hope you don't mind me contacting you, I have read some of your posts and am really sorry to read that you are suffering so badly with RLS and that you've had no success with the drugs you've been prescribed.

I am currently putting together a documentary about Restless Legs Syndrome for broadcast in the UK. We are looking for RLS sufferers to share their story and in doing so help lift the lid on the so-called 'invisible illness'. RLS is often ignored in the UK and we are hoping with this documentary we can raise awareness and understanding. Here is a link to our company website and RLS documentary advert:

http://www.iconfilms.co.uk/whats-going-on.html

If you would like to be involved please do get in contact - I would really like to be able to set up a phone call between you and our Researcher, Laura so you can talk about your experiences as an RLS sufferer, and coping mechanisms you have.

Thanks for your time.
Best wishes,

Ariane
Icon Films
rls@iconfilms.co.uk