Now I Also Have Visual Snow, After Images, Blurry Vision, Worsening Eyesight in the Dark...

[Laurie1961]

I'm so sorry to hear you also have these horrible symptoms too. I have them all + fairly bad floaters. It's horrible and it seems to be progressing in a bad way.

Me too.

 

[aot]

Hey, @Orions Pain. VSI is releasing a free treatment on the 7th. According to an email I received when I signed up, 47% percent of participants in their trial experienced some form of relief in their visual symptoms. Hopefully this can help you, even if only a little.

 

[TheDanishGirl]

Hey, @Orions Pain. VSI is releasing a free treatment on the 7th. According to an email I received when I signed up, 47% percent of participants in their trial experienced some form of relief in their visual symptoms. Hopefully this can help you, even if only a little.

View attachment 38519

Interesting! What kind of treatment is this??

 

[aot]

Interesting! What kind of treatment is this??

Some kind of video treatment, I guess. You're supposed to watch it for 30 or so minutes a day, preferably on a monitor or laptop. I'm not really sure how it works.

And it's free! So even if it has no effect, at least the only thing wasted is your time.

 

[FGG]

Hey, @Orions Pain. VSI is releasing a free treatment on the 7th. According to an email I received when I signed up, 47% percent of participants in their trial experienced some form of relief in their visual symptoms. Hopefully this can help you, even if only a little.

View attachment 38519

Thank you for alerting me to this! I miss seeing stars so much (mine is only that terrible at night). Just sent an email. I wonder if we can start a treatment thread about this.

 

[Orions Pain]

Some kind of video treatment, I guess. You're supposed to watch it for 30 or so minutes a day, preferably on a monitor or laptop. I'm not really sure how it works.

And it's free! So even if it has no effect, at least the only thing wasted is your time.

I'm happy they're working on finding treatment/cure for VS! Perhaps in doing so they'll be able to unlock the mystery of tinnitus as well, at least the brain aspect of it

Thank you for sharing!

 

[Nothisispatrick]

Some kind of video treatment, I guess. You're supposed to watch it for 30 or so minutes a day, preferably on a monitor or laptop. I'm not really sure how it works.

And it's free! So even if it has no effect, at least the only thing wasted is your time.

Like everyday go get treatment? Or...? Is this all they're going to do or are they going to come out with more? Just interested to know.

 

[TheDanishGirl]

Some kind of video treatment, I guess. You're supposed to watch it for 30 or so minutes a day, preferably on a monitor or laptop. I'm not really sure how it works.

And it's free! So even if it has no effect, at least the only thing wasted is your time.

Oh, I see.



I already know of something similar. like watching the above video, for a little while and then looking away, makes the visual snow gone for a very short while... at least for me it does... Now, my visual snow is really not a problem in itself (the floaters, afterimages ect. is) It's very mild, but maybe somebody else with worse visual snow may find this just a tad useful.

Now I don't know if the effect will last longer, the longer you watch the video. I only watched it like 20-30 seconds, just to see if it had any effect on visual snow at all.

 

[aot]

Oh, I see.



I already know of something similar. like watching the above video, for a little while and then looking away, makes the visual snow gone for a very short while... at least for me it does... Now, my visual snow is really not a problem in itself (the floaters, afterimages ect. is) It's very mild, but maybe somebody else with worse visual snow may find this just a tad useful.

Now I don't know if the effect will last longer, the longer you watch the video. I only watched it like 20-30 seconds, just to see if it had any effect on visual snow at all.

Similar to that, I guess. But I think it's supposed to be a series of animations, as opposed to just TV static.

 

[FGG]

Oh, I see.



I already know of something similar. like watching the above video, for a little while and then looking away, makes the visual snow gone for a very short while... at least for me it does... Now, my visual snow is really not a problem in itself (the floaters, afterimages ect. is) It's very mild, but maybe somebody else with worse visual snow may find this just a tad useful.

Now I don't know if the effect will last longer, the longer you watch the video. I only watched it like 20-30 seconds, just to see if it had any effect on visual snow at all.

What size screen did you use? This definitely does not work for me on mobile.

 

[TheDanishGirl]

Visual snow really is tinnitus in the eyes. They are so similar, just different senses really. I hope that visual snow research will also be fruitful for us tinnitus and hyperacusis sufferers. I personally believe it will.

 

[TheDanishGirl]

What size screen did you use? This definitely does not work for me on mobile.

A 17 inch laptop screen. I would expect it doesn't work on mobile... way too small a screen.

 

[TheDanishGirl]

Similar to that, I guess. But I think it's supposed to be a series of animations, as opposed to just TV static.

Sure does sound intriguing

 

[aot]

Visual snow really is tinnitus in the eyes. They are so similar, just different senses really. I hope that visual snow research will also be fruitful for us tinnitus and hyperacusis sufferers. I personally believe it will.

Not sure about hyperacusis, but I'm also fairly certain that anything that helps tinnitus will also help VS. I didn't have VS until my tinnitus worsened, and tinnitus is an official symptom of VS.

@Hazel said a while ago that the Visual Snow Initiative is going to be interviewed on the Tinnitus Talk Podcast at some point.

 

[FGG]

Similar to that, I guess. But I think it's supposed to be a series of animations, as opposed to just TV static.

So apparently this is an actual trial. They said they reported no worsenings when I asked so I signed up for an actual 21 day trial. This does make me a bit nervous though. I at least hope it doesn't make anything worse.

 

[Orions Pain]

@aot @TheDanishGirl would you say your visual snow moves at the same speed as your tinnitus? I hope that makes sense. My main tone isn't a pure eeeee sound but like sand waterfall hissing sort of sounds that changes pitches but not volume every few seconds and when I look at a blank wall it's almost as if the snow is moving to match the speed of the tinnitus - or matches the vibration of it.

 

[aot]

This does make me a bit nervous though. I at least hope it doesn't make anything worse.

I felt the same, and also emailed them about it. Here's a part of the response:

"Hi John, thank you for writing to the VSI and for your kind words. You are correct, the VIP is a potential resource and not a magic bullet for VSS. In non-scientific trials, we achieved enough success that we decided to make it available worldwide. For some it did nothing. For others, it was life changing. Nobody got worse.

We understand and appreciate your concern. Anxiety is the proverbial rock and hard place. VSS exacerbates anxiety. Anxiety exacerbates VSS. The idea of the VIP is to reduce one or more symptoms and in doing so, it reduces the anxiety and stress. The effect can then be across the board improvements, not simply because of the symptoms being reduced, but also because of the positive emotional response which reduces anxiety and depression related to VSS. Our suggestion is to wait and hear what others have to say about their experience with the VIP. I am sure there will be positives and negatives on social media. Then you can make your own decision."

I expect this to be a temporary solution. If this helps your VS, it'll likely go back to baseline after awhile until you do it again, or at least that's how I'm interpreting it. So if it makes things worse, I think that'd also be temporary.

It's important to manage our expectations here: This is a treatment for a very rare, poorly understood condition, with a less than 50% success rate. Hell, it's free. It probably won't cure anybody. It's probably not enough for total relief, but I think it's very existence is still a good sign. Five steps backwards and then four steps back is still a step forward.

Granted, that's easy for me to say because my VS is hardly an issue at all unless I'm in dark interiors.

I hope you get to see your stars again.

 

[aot]

would you say your visual snow moves at the same speed as your tinnitus? I hope that makes sense. My main tone isn't a pure eeeee sound but like sand waterfall hissing sort of sounds that changes pitches but not volume every few seconds and when I look at a blank wall it's almost as if the snow is moving to match the speed of the tinnitus - or matches the vibration of it.

It's hard to say. I don't see the static very much unless I'm in a dark rooms. Sometimes I see, shadows? Like the shadows of blinds? It's hard to explain. Try to film a tv screen with your phone, it kinda looks like that. It doesn't seem to match my tinnitus, though.

 

[FGG]

I felt the same, and also emailed them about it. Here's a part of the response:

"Hi John, thank you for writing to the VSI and for your kind words. You are correct, the VIP is a potential resource and not a magic bullet for VSS. In non-scientific trials, we achieved enough success that we decided to make it available worldwide. For some it did nothing. For others, it was life changing. Nobody got worse.

We understand and appreciate your concern. Anxiety is the proverbial rock and hard place. VSS exacerbates anxiety. Anxiety exacerbates VSS. The idea of the VIP is to reduce one or more symptoms and in doing so, it reduces the anxiety and stress. The effect can then be across the board improvements, not simply because of the symptoms being reduced, but also because of the positive emotional response which reduces anxiety and depression related to VSS. Our suggestion is to wait and hear what others have to say about their experience with the VIP. I am sure there will be positives and negatives on social media. Then you can make your own decision."

I expect this to be a temporary solution. If this helps your VS, it'll likely go back to baseline after awhile until you do it again, or at least that's how I'm interpreting it. So if it makes things worse, I think that'd also be temporary.

It's important to manage our expectations here: This is a treatment for a very rare, poorly understood condition, with a less than 50% success rate. Hell, it's free. It probably won't cure anybody. It's probably not enough for total relief, but I think it's very existence is still a good sign. Five steps backwards and then four steps back is still a step forward.

Granted, that's easy for me to say because my VS is hardly an issue at all unless I'm in dark interiors.

I hope you get to see your stars again.

Thanks. I think I'm going to wait, too. As bad as it is at night or in the dark, it's super mild in the day and non intrusive. I wouldn't want to risk that getting worse before I read some reports.

 

[Orions Pain]

It's hard to say. I don't see the static very much unless I'm in a dark rooms. Sometimes I see, shadows? Like the shadows of blinds? It's hard to explain. Try to film a tv screen with your phone, it kinda looks like that. It doesn't seem to match my tinnitus, though.

Oh gotcha, yeah mine during the day looks less like static, but more like there's a mild drizzle, like tiny tiny raindrops when it's misty outside. Especially on a flat surface. I have fairly bad after imaging, especially with things like blinds open, or heavy patterns

I'm not sure what you mean by shadows? I did try to do what you suggested and didn't notice anything!

 

[TheDanishGirl]

@aot @TheDanishGirl would you say your visual snow moves at the same speed as your tinnitus? I hope that makes sense. My main tone isn't a pure eeeee sound but like sand waterfall hissing sort of sounds that changes pitches but not volume every few seconds and when I look at a blank wall it's almost as if the snow is moving to match the speed of the tinnitus - or matches the vibration of it.

I haven't noticed any behavioral pattern between the two, in my case.

 

[aot]

I'm not sure what you mean by shadows? I did try to do what you suggested and didn't notice anything!

I guess it only works with older TVs and/or phones.

It's like when it's sunny out, and the blinds in windows cast their shadows over something. But it's very faint and I can easily tune it out. I only see the static in dark interiors, and it's so overwhelming that I'm practically blind. Flip on a lightswitch, and it all comes back into focus.

I don't have any problems with seeing outside at night, though.

 

[aot]

Has anyone had their VS get temporarily worse, and then go back to baseline?

I work up at 5:00 this morning and my VS was crazy. A bunch of crazy shapes were everywhere, trailing was insane, and of course my tinnitus was louder.
I made to the bathroom and my vision was thumping in correlation with my heartbeat. I splashed some water on my face and calmed myself down. The visual symptoms went back to baseline, and the tinnitus went down after about 15 minutes.

I've been super stressed lately. Could that be the cause?

 

[Novachrono]

I am now 4 months in and seem to be developing additional symptoms. On top of tinnitus in both ears, hyperacusis, and TTTS I am now also experiencing Visual Snow, after images, blurry vision in my right eye in addition to pressure in my eyebrow area in the same eye, and worsening eyesight in the dark. The blurry vision is worst at night.

At first I thought it was due to strain from being on my work computer/looking at my phone, but now that I am out of work and just at home with limited screen exposure and last night it was the worst it's ever been, I think that can be ruled out.

Is it worth it seeing a doctor? With all the Coronavirus stuff going on I'm not even sure I'd be able to get in to see a specialist or if it's even worth it at this point. Anyone else here experience the same? It seems like each month I think "it can't get worse" and it just keeps getting worse.

I am so worried that I am going to go blind and the thought of not being able to be a functioning member of society in my mid twenties has me beyond stressed and afraid of what the future looks like.

How is the visual snow?

 

[Novachrono]

I have the same. Saw a neuro-opthalmologist. Got a diagnosis of benign visual snow. She suggested mindfulness. Said visual snow can go away. My impression is that they understand this as much as they understand tinnitus. But I could live with these symptoms, it's the tinnitus that's killing me

Has your visual snow gotten better?