Exciting News From The Visual Snow Initiative

[James3524]

https://www.youtube.com/watch?v=4T_zCNBr0ao

[Jay1]

That's great, thanks for sharing. The medication study is very exciting, fingers crossed for some news upon completion in 2025! 

[brake]

Wow Sierra Domb has done a lot for our cause and made a lot happen. She even mentioned HPPD in the video and said this research will gain insight into other topics besides Visual Snow. Time person of the year nomination? Lol

Edited September 4 by brake

[James3524]

On 9/4/2024 at 4:15 AM, Jay1 said:

That's great, thanks for sharing. The medication study is very exciting, fingers crossed for some news upon completion in 2025! 

Very exciting. I asked the VSI what medication is being tried, but they didn't want to tell me until the ethics were approved, and the study was published. Based on Sierra's language, it seemed like they were trying multiple drugs as well.

Edited September 7 by James3524

[boyo4202]

That sounds promising. I wonder what drugs they’ll go for. I really hope it’s not antipsychotics or antidepressants because I feel like that’ll just be a dead end. I expect we will probably see lev and clonazepam. I’d hope for some fringe/research drugs like riluzole/troriluzole or drugs being researched for tinnitus like K channel modulators but I wouldn’t bet on it.

[James3524]

On 9/8/2024 at 7:55 AM, boyo4202 said:

That sounds promising. I wonder what drugs they’ll go for. I really hope it’s not antipsychotics or antidepressants because I feel like that’ll just be a dead end. I expect we will probably see lev and clonazepam. I’d hope for some fringe/research drugs like riluzole/troriluzole or drugs being researched for tinnitus like K channel modulators but I wouldn’t bet on it.

I don't think they are trying clonazepam or Keppra, as these have been deemed not very effective or safe in the long term, even by the researchers conducting the study, such as Drs. Goadsby, Schankin, and Puledda.

I've tried figuring out what drug(s) they are testing, but I really have no clue. I am certainly excited for the results, though!

 

[yarkadin]

2 hours ago, James3524 said:

I don't think they are trying clonazepam or Keppra, as these have been deemed not very effective or safe in the long term, even by the researchers conducting the study, such as Drs. Goadsby, Schankin, and Puledda.

I've tried figuring out what drug(s) they are testing, but I really have no clue. I am certainly excited for the results, though!

 

I didn't have time to watch this full video yet.  Are they going to test a series of drugs with a cutoff date of end of 2025, is that what I am understanding?  Just top question comes to mind: who are going to be the guinea pigs for these tests?   Something as subjective as this cannot be tested on lab animals or outside of a subject...

[James3524]

19 hours ago, yarkadin said:

I didn't have time to watch this full video yet.  Are they going to test a series of drugs with a cutoff date of end of 2025, is that what I am understanding?  Just top question comes to mind: who are going to be the guinea pigs for these tests?   Something as subjective as this cannot be tested on lab animals or outside of a subject...

They will be recruiting people in Switzerland.  I’m not sure if it’s multiple drugs or just one drug. The response I received from them suggested it might be multiple drugs, although their language was intentionally vague due to 'legal and public safety reasons.' We will find out which drug(s) were tried after the ethics approval is obtained or the study is published in July 2025.

Edited Tuesday at 05:10 PM by James3524