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.

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tDCS surprise

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