Restless Legs Syndrome (RLS) Discussion Board

Hi, I've had RLS for about 15 years and over the years have taken all the meds mentioned on the forum with all the usual problems. Oxycontin 20 mg being the only one that gives ANY relief now. We ( my neurologist & I) are about to embark on a Tetra Benazine 25mg journey and I was wondering if anyone has tried this and if so what were your results.

Tetra Benazine (TBZ) is not a name that I remember reading about in this forum. I was unable to open several links related to TBZ and restless legs that showed up in my google search but it's related to dopamine in some way or another and apparently useful in treating hyperkinetic movement disorders. But you probably already know that. Seems to carry a strong warning related to side effects of depression and suicidal ideation. What type of info does your neurologist impart related to wanting to try TBZ? Sounds interesting.

I did a search and was unable to open several articles, however this did open.
https://www.deepdyve.com/lp/elsevier/ef ... sXYwCkh8fW
No doubt you have found this one yourself.
I am not familiar with this medication and would reiterate Sojourner's comment about the side effects.

The other articles that I found were all associated with the reference that Polar Bear found.

I will add that the author of the article was my doctor last year until I moved to Colorado. I was with him and for a little more than a year and at no time did he mention TBZ as a possible treatment. During my last visit we discussed all sorts of treatment options due to my pending move and augmentation on Neupro, so he had an opportunity to do so. He was a big fan of Horizant (which worked just like gabapentin for me), so maybe he simply moved on to using something else as his non-DA, non-opiate option for RLS.

Polar Bear wrote:I did a search and was unable to open several articles, however this did open.
https://www.deepdyve.com/lp/elsevier/ef ... sXYwCkh8fW
No doubt you have found this one yourself.
I am not familiar with this medication and would reiterate Sojourner's comment about the side effects.

Couldn't get that one to open either. May be something in my browser. Can you give just the short version?


Wishing all who visit here some peace this night

Here is a quote from near the end of the one page report:

"Overall TBZ did not seem to worsen RLS symptoms, and in some cases may have improved symptoms. It suggests that reduced pre-synaptic dopamine release does not directly result in RLS symptom worsening despite RLS improvement with dopamine agonists. Furthermore, no patients treated with dopamine agonists developed augmentation while treated with TBZ. The absence of augmentation in this population is very preliminary but a potentially interesting observation".

The patient population for the study was 14 who all had RLS and a hyperkinetic disorder. These disorders were tardive dyskinsia(7), Tourette syndrome(2), dystonia(2), chorea(2) and oral stereotypies(1).

Interesting observation about augmentation...

Rustsmith wrote:Here is a quote from near the end of the one page report:

"Overall TBZ did not seem to worsen RLS symptoms, and in some cases may have improved symptoms. It suggests that reduced pre-synaptic dopamine release does not directly result in RLS symptom worsening despite RLS improvement with dopamine agonists. Furthermore, no patients treated with dopamine agonists developed augmentation while treated with TBZ. The absence of augmentation in this population is very preliminary but a potentially interesting observation".

The patient population for the study was 14 who all had RLS and a hyperkinetic disorder. These disorders were tardive dyskinsia(7), Tourette syndrome(2), dystonia(2), chorea(2) and oral stereotypies(1).

Thanks.

Hi, Over the last 16 years I have tried all the known meds to relieve the symptoms of RLS except for Methadone. The ONLY one that is really effective for me is Oxycontin CR 20mg. as I fear Augmentation if I use Oxy as a daily weapon in the battle I only take it as a last resort. Currently my cocktail consists of Lyrica, 150mg x 2 p/d, Targin 10mg x 2 p/d and Stalevo 200mg x 4 p/d these don't stop RLS only suppress the pain until about 9/10am when I get some sleep and then the cycle starts again.
My Neou has suggested we give "Tetrabenazine" 25mg a try as he is running out of options. Has anyone (including your researchers) gone down this path? The only other option I have thought about is Deep Brain Stimulation. Has any research been carried out on DBS for RLS? Any suggestions will be gratefully accepted.

Sorry about the brevity of the post but my concentration level is pretty low.

The only other option I have thought about is Deep Brain Stimulation. Has any research been carried out on DBS for RLS? Any suggestions will be gratefully accepted.

I met with my doctor at the Univ of Colorado Medical School yesterday. One of the neurology department's joint research areas is DBS. Since I have severe RLS and was a new patient, I was asked if I had any interest in becoming a research subject. Although I am very interested in participating in a clinical trial, DBS is a bit extreme for me right now, even if the doctor joking remarked that it could result in getting the procedure named after me. I was desperate for help at the time, but not so desperate that I would submit to research level neurosurgery.

If you are interested, check out the department at:

http://www.ucdenver.edu/academics/colleges/medicalschool/departments/neurology/research/MovementDisordersCenter/DBS/Pages/default.aspx