tDCS surprise

henry.n · November 14, 2018, 3:31pm

I see you were also on clinical trial 4157. Any luck in using the pill? After 1 year, it proved to be a dud for me.

Shoaib · November 14, 2018, 3:43pm

There was improvement with BHV-4157. They say there was no deterioration either while on it. Go figure.

Beryl_Park · November 17, 2018, 9:40am

I read that Biohaven will be introducing a clinical trial for TRORILUZOLE, BHV 4157-206. This was mentioned on a recent newsletter from www.ataxia.org xB

Shoaib · November 17, 2018, 1:31pm

This is supposed to be slowing the progression of the disease. It’s an expansion study of the previous BHV 4157. I initially heard from Johns Hopkins, but nothing recently.

Shoaib · November 22, 2018, 2:59pm

I am not being able to go to Las Vegas for the annual NAF meeting next year. If anyone goes, could you learn more about tDCS ( Transcutaneous Direct Current Stimulation) ? This seems to be interim method to improve cerebellar function till gene editing or stem cell infusion are successful.

Milana-A · December 14, 2018, 9:32pm

I hope to try it soon for my daughter also… What do you think when will it be available on the market?

Shoaib · December 15, 2018, 2:26pm

Although tDCS had shown some promising results on the cerebellum, I am yet to see any FDA approved or cleared device in that regard.

henry.n · December 17, 2018, 4:24pm

I’m curious, where did you read recently that there is promising results from using tDCS?

Shoaib · December 17, 2018, 4:39pm

ncbi.nlm.nih.gov

Cerebello-spinal tDCS in ataxia: A randomized, double-blind, sham-controlled, crossover trial.

A Benussi, V Dell'Era, V Cantoni, E Bonetta, R Grasso, R Manenti, M Cotelli, A Padovani and B Borroni, Neurology, Sep 2018 18

To investigate whether a 2-week treatment with cerebellar anodal and spinal cathodal transcranial direct current stimulation (tDCS) could reduce symptoms in patients with neurodegenerative ataxia and could modulate cerebello-motor connectivity at the short and long terms.We performed a double-blind, randomized, sham-controlled, crossover trial with cerebello-spinal tDCS (5 d/wk for 2 weeks) in 20 patients with neurodegenerative ataxia. Each patient underwent a clinical evaluation before and after real tDCS or sham stimulation. A follow-up evaluation was performed at 1 and 3 months with a crossover washout period of 3 months. Cerebello-motor connectivity was evaluated with transcranial magnetic stimulation at baseline and at each follow-up.Cerebello-spinal tDCS showed a significant improvement in all performance scores (Scale for the Assessment and Rating of Ataxia, International Cooperative Ataxia Rating Scale, 9-Hole Peg Test, 8-m walking time), in motor cortex excitability, and in cerebellar brain inhibition compared to sham stimulation.A 2-week treatment with cerebello-spinal tDCS reduces symptoms in patients with ataxia and restores motor cortex inhibition exerted by cerebellar structures. Cerebello-spinal tDCS might represent a promising future therapeutic and rehabilitative approach in patients with neurodegenerative ataxia, still an orphan disorder of any pharmacologic intervention.NCT03120013.This study provides Class II evidence that cerebello-spinal stimulation is effective and safe in cerebellar ataxia.

ncbi.nlm.nih.gov

Cerebello-spinal tDCS in ataxia: A randomized, double-blind, sham-controlled, crossover trial.

A Benussi, V Dell'Era, V Cantoni, E Bonetta, R Grasso, R Manenti, M Cotelli, A Padovani and B Borroni, Neurology, Sep 2018 18

To investigate whether a 2-week treatment with cerebellar anodal and spinal cathodal transcranial direct current stimulation (tDCS) could reduce symptoms in patients with neurodegenerative ataxia and could modulate cerebello-motor connectivity at the short and long terms.We performed a double-blind, randomized, sham-controlled, crossover trial with cerebello-spinal tDCS (5 d/wk for 2 weeks) in 20 patients with neurodegenerative ataxia. Each patient underwent a clinical evaluation before and after real tDCS or sham stimulation. A follow-up evaluation was performed at 1 and 3 months with a crossover washout period of 3 months. Cerebello-motor connectivity was evaluated with transcranial magnetic stimulation at baseline and at each follow-up.Cerebello-spinal tDCS showed a significant improvement in all performance scores (Scale for the Assessment and Rating of Ataxia, International Cooperative Ataxia Rating Scale, 9-Hole Peg Test, 8-m walking time), in motor cortex excitability, and in cerebellar brain inhibition compared to sham stimulation.A 2-week treatment with cerebello-spinal tDCS reduces symptoms in patients with ataxia and restores motor cortex inhibition exerted by cerebellar structures. Cerebello-spinal tDCS might represent a promising future therapeutic and rehabilitative approach in patients with neurodegenerative ataxia, still an orphan disorder of any pharmacologic intervention.NCT03120013.This study provides Class II evidence that cerebello-spinal stimulation is effective and safe in cerebellar ataxia.

They are all over.

lifeee · February 8, 2019, 5:15pm

Dear Shoaib, now that some time has passed since you tested this tDCS, what is your current thought on it? Did it improve your symptoms? Did improvement last?

Shoaib · February 9, 2019, 11:36am

I had never been on tDCS. But it’s about 10days I had been on Biohaven expanded study with Trigriluzole ( BHV 4157). I would also be interested to know more about tDCS.

chuck · February 28, 2019, 1:26am

Hi Kylee_anne,

Have you seen an improvement using this treatment?

kylee_anne · February 28, 2019, 3:22am

Hi Chuck, tDCS is great for a quick boost in my opinion. I’ve bought a machine for home. But because set up of the electrodes has to be done by someone else and it can be tricky to get right I find I don’t do it everyday. Sometimes I try other therapies too so I choose not to do tDCS. Initially I found huge gains with it but these seem to drop over time. Everybody is different though.

chuck · February 28, 2019, 3:39am

Thanks for the reply - I have just completed 10 treatments at Currambine - unfortunately no improvement at all. I have just been referred to a neorologist at SCGH who knows quite a bit about tDCS treatment - hopefully something good will come of that - I will let you know how I go.

kylee_anne · February 28, 2019, 3:54am

Sorry to hear that Chuck. Fingers crossed for you.

lifeee · March 12, 2019, 7:22am

Could you share which machine for tdcs you bought and where we can order it? Thank you

kylee_anne · March 13, 2019, 5:57am

Sure Lifeee. I use a TCT machine. They only have one product for end users. See https://www.trans-cranial.com/products-for-end-users/
And I just have to say again, this worked for me short-term but may not work for someone else. I’d recommend trying before you buy.

Topic		Replies	Views
On my third neurologist General	4	1861	September 12, 2015
tDCS potential therapy for all Ataxias News, Research, and Clinical Trials	6	614	October 12, 2019
Magnet therapy? Complementary Therapies	22	1290	August 23, 2018
Coconut oil...cure? Complementary Therapies	12	4402	October 9, 2017
First Post General	12	1729	March 6, 2013

tDCS surprise

Related Topics