Exciting News From The Visual Snow Initiative

[James3524]

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

[Jay]

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, 2024 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, 2024 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 September 10, 2024 by James3524

[brake]

Yup new video released.

VSI Funds New Studies on Possible Medication for Visual Snow Syndrome

Will be happening on July 2025 in Switzerland in the university of Bern. She mentions HPPD again.

[rafiki]

While this is exciting, I’m a little suspicious about how vague they’re being. Usually when clinical trials are happening you know exactly what medication is being trialled.

Edited September 29, 2024 by rafiki

[Jay]

On 9/29/2024 at 12:42 AM, rafiki said:

While this is exciting, I’m a little suspicious about how vague they’re being. Usually when clinical trials are happening you know exactly what medication is being trialled.

Some trials are, some trials are private. 

I remember a trail for HPPD medication by Dr Abraham was public knowledge on here and everyone just started trying that med anyway, before the trail was even over... So it is probably wise for them to keep it private. 

[James3524]

On 9/28/2024 at 7:42 PM, rafiki said:

While this is exciting, I’m a little suspicious about how vague they’re being. Usually when clinical trials are happening you know exactly what medication is being trialled.

This trial is also being conducted through a hospital clinic in Switzerland and is awaiting ethics approval. Once they receive that, the study protocol should be posted on PubMed, including the name of the medication. I assume this will happen within the next few months, and then the results will be published in July 2025.

 

Edited October 2, 2024 by James3524

[brake]

4 hours ago, James3524 said:

This trial is also being conducted through a hospital clinic in Switzerland and is awaiting ethics approval. Once they receive that, the study protocol should be posted on PubMed, including the name of the medication. I assume this will happen within the next few months, and then the results will be published in July 2025.

 

Sounds legit to me.

[brake]

The Visual Snow Initiative (VSI) has concluded the last phase of its mission to secure a first-ever ICD code for Visual Snow Syndrome (VSS).

Edited December 17, 2024 by brake

[brake]

These are the people involved in actually making it happen. Good luck trying to get in contact with them and helping out. I actually did get responses from the visual snow initiative though but not from others.

[rafiki]

In getting the ICD code or the clinical trials?

 Have we had anything published on pubmed yet?

[brake]

14 hours ago, rafiki said:

In getting the ICD code or the clinical trials?

 Have we had anything published on pubmed yet?

Idk but after I told my doctor, she looked it up and said she found visual snow on her computer.

 

[brake]

Visual Snow Initiative & Oxford Mindfulness: Global Access to MCBT for Visual Snow Syndrome

New video: Wow so they created this free mindfulness app worldwide based off of Oxford mindfulness for people with visual snow syndrome which has been shown under functional MRI that it like changes their brains for the better and makes them feel better. But it is not a replacement for doctors and therapists and stuff. 

[brake]

These are the medications and supplements the visual snow initiative recommends as of yet.

[brake]

Interview with Jacqueline Theis, OD, FAAO on Visual Snow Syndrome

 

Wow the awareness has definitely increased.

[Jay]

I wish one of us was as well spoken when discussing HPPD! Could make a world of difference in getting exposure. I'd be a dribbling mess doing such an interview. 

[brake]

On 1/3/2025 at 11:25 PM, rafiki said:

In getting the ICD code or the clinical trials?

 Have we had anything published on pubmed yet?

Visual Snow Syndrome Improves With Modulation of Resting-State Functional MRI Connectivity After Mindfulness-Based Cognitive Therapy: An Open-Label Feasibility Study

 

There are probably others but this one is straight forward enough.

[Rhino]

The whole visual snow initiative seems very well organised. Fair play to the founder. The information and look of the website, social media and ability to get lots of high level doctors together is admirable.

 

I was quite interested to read about the parasthesia on the website as one of the symptoms because that is something I have always struggled with but haven't found much documented from a HPPD point of view. The brain zaps also are very reminiscent of what I periodically have in my sleep too.

[brake]

New Resource for Children with Visual Snow Syndrome

I have jumpy vision and altered perception of movement daily and it sucks lol. I thought my brain had to calm down and stop tripping but I guess this is just a symptom. It becoming more known and acknowledged like this helped me move on I guess.