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Ataxia Support

tDCS surprise

#21

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.

#22

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

#23

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 :slightly_smiling_face: xB

#24

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.

#25

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.

#26

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

#27

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

#28

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

#29


They are all over.

#30

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?

#31

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.

#32

Hi Kylee_anne,

Have you seen an improvement using this treatment?

#33

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.

#34

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.

#35

Sorry to hear that Chuck. Fingers crossed for you.

#36

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

#37

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.