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.
There was improvement with BHV-4157. They say there was no deterioration either while on it. Go figure.
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
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.
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.
I hope to try it soon for my daughter also… What do you think when will it be available on the market?
Although tDCS had shown some promising results on the cerebellum, I am yet to see any FDA approved or cleared device in that regard.
I’m curious, where did you read recently that there is promising results from using tDCS?
They are all over.
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?
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.
Have you seen an improvement using this treatment?
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.
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.
Sorry to hear that Chuck. Fingers crossed for you.
Could you share which machine for tdcs you bought and where we can order it? Thank you
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.