Difficulty Dealing with Visual Snow Worsening

[Sevv]

Hey guys

Having a tough time...

After I got used to my mild visual snow somewhat, I'm down in the dumps again. It recently worsened and is now more noticeable. On top my trailing is now clearly noticeable when before I had to check for it and depth perception is weird (like I have to concentrate to perceive depth).

How are you other guys here with VS doing? What symptoms do you have? Mild, severe? Tied to your tinnitus level? Do you have "VS spikes"? I hope that my worsening is just temporary because of screen time (I have a desk job).

I long back for the time where I had only tinnitus. I remember this weekend I spent with my mum hiking and even if I was down due to tinnitus I miss it to much now. It was so beautiful. I wished I would just get to point where my symptoms didn't continue to worsen. Why do I, who actually appreciated silence and seeing the world as it is, have to be deprived from that?

It's really difficult going on when things just pile up and up and up. I was at a point where I was content with living with tinnitus (even when it spiked after being essentially gone). Then I got VS, but got used to it. Now I have worse VS, and I have to adapt yet again? This is such horseshit.
Worst thing is that VS will take at least 10 years more for the definite cure. I feel like @fishbone or our other veterans at the beginning of the 90s getting loud tinnitus and no cure in sight.

I'm still grateful for my life, even if had to go through many difficulties. I'm even more appreciative for what remains. It is humbling. Still I hope I can keep going with this for the next 20 years and not crack.

 

[Zeneth]

The Visual Snow Initiative said they are working on a treatment and are excited about it.

 

[linearb]

I've had moderate to significant visual snow since ~1999, it's been basically stable since ~2001 and I almost never think about it except when people post threads like this. Then I realize, "oh yea my entire visual field is a constant haze of static, mis-triggered line and shape recognition, afterimages and other random artifacts, wow".

For whatever reason, after about ~10 months I was able to habituate the VS in a way that never really clicked in for me with tinnitus. It's not that it got better; it also hasn't been progressive. It's just there, it's part of how my visual processing works, and mostly I see around and through it.

If I start really focusing on it, it will begin to blend with my mind's eye and conscious imagination and I will start to see forms in the noise/static; just boring stuff, horizontal and vertical lines mostly, sometimes faces. The human optic nerve has a bunch of layers of pattern recognition that happen before information gets to the prefrontal cortex, and my armchair neurologist's guess is that hyperactivity in those neurons is part of what's going on in VS. But, ultimately, it's just like tinnitus: excess neuronal activity not being filtered out, and clouding a percept input.

tl;dr after 20 years my best advice is live your life and do your thing, and try to just let the VS do its thing. If my career depended a lot on being able to identify stars at night with my naked eye, I'd be in trouble, but staring at text and faces on screens 35-45 hours a week is fine.

 

[AVIYT]

I can look at the dark ceiling at night or gravel and after a few seconds, the visual snow and floaters focus more-so to create patterns in a psychedelic nature. It's terrifying. I thought it'd be cool and pretty, but it's always changing.

I've gotten used to it during the day. But at night.. I can't let myself focus too much on it.

 

[Juan]

I can look at the dark ceiling at night or gravel and after a few seconds, the visual snow and floaters focus more-so to create patterns in a psychedelic nature. It's terrifying. I thought it'd be cool and pretty, but it's always changing.

I've gotten used to it during the day. But at night.. I can't let myself focus too much on it.

Why did the visual snow appear in the first place?

 

[AVIYT]

Why did the visual snow appear in the first place?

Pregabalin side effect. I mean I experienced it part of HPPD years back when I took a large dose of LSD, but it wasn't the same and that disappeared within a month or two after the incident. It gradually got better. Here? No change. Some days I think it even worsened from January lol

But this time it's more pronounced, and funnily enough, MORE psychedelic from Pregabalin than it ever got from LSD. LSD was more mental for me, although obviously I experienced the physical side effects when I had my bad trip. A legal and prescribed drug did way more damage than any recreational substance I ever took.

 

[linearb]

@Sevv this is a little more extreme than my usual, but waving my hand across the air on a sunny day looks something like this

this is "normal"

 

[Matty1996]

I'm having trouble finding much information about VS and I'm unsure if I have it/am developing it.

Last friday I was looking up at the sky on a very cloudy day and began noticing loads of fast moving dots, which has never happened before. Since then I've been concerned about VS and have noticed things looking "fuzzy" or grainy when it is dark or at a distance. I'm not sure if I am imagining it however or if my vision has always been this way. I don't see any noise on things if they are close up, like if I put my arm to my face for instance, and I only seem to see these fast moving dots on the sky.

Anybody have any clue as to what this might be?

 

[linearb]

Last friday I was looking up at the sky on a very cloudy day and began noticing loads of fast moving dots, which has never happened before.

https://en.wikipedia.org/wiki/Entoptic_phenomenon

Some examples of entoptical effects include:...

Blue field entoptic phenomenon has the appearance of tiny bright dots moving rapidly along squiggly lines in the visual field. It is much more noticeable when viewed against a field of pure blue light and is caused by white blood cells moving in the capillaries in front of the retina. The white cells are larger than the red cells and must deform to fit. As they go through a capillary, a space opens up in front of them and red blood cells pile up behind. This makes the dots of light appear slightly elongated with dark tails.[4][5]

Totally normal; unrelated to VS. Happens to me from time to time; VS is 24/7.

The rest of your post sounds more like anxiety about the idea of VS, than VS. I'd say don't worry about it, you're probably not at risk and even if you are I've had moderately severe VS for half my life and it's fine and so far has not been progressive. It can make cannabis and/or valerian more interesting late at night, too, I guess.

 

[Matty1996]

@linearb Cheers. I probably should mention as well, my right eye has been rubbish for years, astigmatism and I suspect I've inherited my mum's myopia too which I'm guessing is what is making everything at a distance blurry. Too much time behind screens and late nights aren't helping I suppose I also never wear glasses...

So what is the "hallmark" symptom of VS? Your field of view is covered in static? I think I experience something like this in the dark but not really when its bright. And as I mentioned stuff up close seems to be completely clear. I wonder if what I'm seeing is not just the blurriness from my right eye due to strain at the moment.

Either way I'm not as stressed as I was about this a few days ago, since tinnitus I'm being far too jumpy when I notice new stuff.

 

[FGG]

I saw an ophthalmologist who specializes in Neuro ophtho issues (Dr. B. Farris in OKC--now retired unfortunately) and he told me 2 things: almost all--if not all--people with visual snow have some sort of migraine disorder (standard, vestibular, or ocular) and that in his experience it always eventually gets better even if it takes a decade. He said it rarely goes totally away but gets to the point that you have to look for it.

He said it wondered if it was like an aura that doesn't go away.

Not sure how useful the first bit of info is but the second gave me a lot of hope.

 

[Hazel]

We will be interviewing Visual Snow Initiative on the Tinnitus Talk Podcast!

We will be speaking to Sierra Domb and probably also one of the scientists linked to VSI.

We haven't set a date yet but hope to record in March at the latest.

Please provide us with your questions for VSI here.

 

[brokensoul]

We will be interviewing Visual Snow Initiative on the Tinnitus Talk Podcast!

Please provide us with your questions for VSI here.

Filled in the survey. Three questions is not a lot for someone who is deep into this disorder. I have so many questions about this syndrome that has turned my life around.

I didn't write my questions down, but they were basically:

Is VSS somehow related to (hidden) hearing loss? Is there any hope that hearing regeneration will alleviate VSS? In the hypothesis that hearing loss causes maladaptive neuroplasticity affecting the thalamic function, causing VS for some people.

Is VSS purely a brain disorder (unrelated to hearing loss)? More specifically is it possible that it is purely a thalamic dysfunction? Is there any research that indicates that VSS sufferers may have a partial thalamic stroke?

What is the most plausible pathological hypothesis today?

This is my main question basically. It all comes down to what extent there is hope that this will someday be treatable.

 

[Markku]

Three questions is not a lot for someone who is deep into this disorder. I have so many questions about this syndrome that has turned my life around.

You can fill the survey multiple times and we'll record all the questions.

 

[brokensoul]

You can fill the survey multiple times and we'll record all the questions.

Seems to be working fine now. I'm providing more questions!

 

[brokensoul]

I've made the effort to give you more potential questions to ask. I know that time will be limited. I trust your judgment.

What actions are taken to get more funding to research this debilitating disorder/disease?

What actions are taken to get research going on a global scale? Is there any activity to get the EU and/or Asia involved in this?

What actions are taken to get VSS offically recognized as a debilitating disorder/disease?

Do we have any idea yet how many people have this disorder (prevalence)? Is it possible that it is less rare than assumed years ago?

Is it possible to make a global database of VSS people to register all possible details about their onset, possible causes, their list of symptoms? Would this not be very helpful to speed up research?

Why does it get worse for some people? I'm in the case where my VSS symptoms seem to be getting slowly worse and I have no idea what I'm doing wrong. It's not because I'm focussing on it, I'm trying my best to accept my miserable faith, but my visual symptoms are slowly becoming more pronounced.

There are a lot of people on social media that claim that this disorder is caused by stress and/or anxiety? Could there be any truth to this or is it unlikely? If it is, it seems people are stuck in a vicious cycle since this disorder causes stress and anxiety.

I have a constant head ache type of feeling (migraine?). Is this related to the cause or is it a consequence? Or is it simply because of the constant 24/7 neuronal hyperactivity that my head hurts. My EEG shows abnormal brain wave activity and thalamocortical dysrhytmia.

Is there any hard data on VSS improving over time? It seems 99% of VSS people never improve and are stuck with it for the rest of their lives.

Is there any research into a thalamic neuromodulation treatment? Is it correct that the University of Minnesota is working on such a device? (Tinnitus Talk has a user @kelpiemsp that claims his VS and tinnitus was reduced after this treatment).

What can HPPD tell us about VSS?

Is there any new medication that may actually help to reduce symptoms? Is there any protocol to help objectively reduce symptoms? Are there any medical reports of people who reduced their symptoms in any way?

There are several reports about medication causing VSS. I believe mine is caused by medication. Is there any raising awareness in the medical field to register VSS as a side-effect reported by patients? To make the FDA and the medical field aware of this possible debilitating side effect of certain medication. My doctor had basically no awareness about VSS and has absolutely no idea how this turned my life around.

Why are so many ophthalmologists still not aware of this condition? I understand it's neurological, but everyone will consult their eye doctor, so they should all be aware of it. Eye doctors need to asap refer people to neurologists instead of saying that nothing is wrong. This is problematic and needs to improve asap. Is there no way to inform the global ophthalmologist community?

How hopeful are you to have a real working treatment in the coming years?

@Hazel and @Markku Thanks so much for all the hard work you are doing. Sincerely appreciated.

 

[Greg Sacramento]

It is my understanding that visual snow, floaters, black dots and red lightening seen on the side of one eye is often caused from a hyperactive moment or hypertension crisis. This is where blood pressure raises suddenly for a brief period of time. This happens when a person is under stress and more often happens with awkward neck position.

Similar to a stroke where hyperactive crisis increases white matter in the brain, this has already happened with those having tinnitus according to some neuro studies. Strokes for older people can happen when sleeping in a chair where the neck positions forward. The eyes can receive damage from hypertension. Being older, using certain meds/drugs and overload of some vitamins such as vitamin A can increase changes of eye injury or cause eye problems. NAC can cause damage to the white areas of the eye.

Those with pulsatile tinnitus have blood flow and artery problems and often have stress and hypertension. A hypertension crisis can cause carotid artery and organ damage such as to the kidneys. Often enlarged from a hypertension crisis is the abdominal aortic and PT thumping can associate to this. Motor and generator sounds from hypertension/heart which may not have enlarged the abdominal aortic is often associated to neck arteries.

I developed hypertension and had a hypertension crisis which caused visual snow, floaters and detachment of my retina in my left eye. I was playing a computer game and got excited. Just so much more to say - I have 100 downloads on more than I have briefly discussed, but visual snow, floaters, black dots can happen from hypertension. When one has a hypertension crisis they need to be placed in an ICU and receive IV drugs.

 

[Sevv]

It is my understanding that visual snow, floaters, black dots and red lightening seen on the side of one eye is often caused from a hyperactive moment or hypertension crisis. This is where blood pressure raises suddenly for a brief period of time. This happens when a person is under stress and more often happens with awkward neck position.

Similar to a stroke where hyperactive crisis increases white matter in the brain, this has already happened with those having tinnitus according to some neuro studies. Strokes for older people can happen when sleeping in a chair where the neck positions forward. The eyes can receive damage from hypertension. Being older, using certain meds/drugs and overload of some vitamins such as vitamin A can increase changes of eye injury or cause eye problems. NAC can cause damage to the white areas of the eye.

Those with pulsatile tinnitus have blood flow and artery problems and often have stress and hypertension. A hypertension crisis can cause carotid artery and organ damage such as to the kidneys. Often enlarged from a hypertension crisis is the abdominal aortic and PT thumping can associate to this. Motor and generator sounds from hypertension/heart which may not have enlarged the abdominal aortic is often associated to neck arteries.

I developed hypertension and had a hypertension crisis which caused visual snow, floaters and detachment of my retina in my left eye. I was playing a computer game and got excited. Just so much more to say - I have 100 downloads on more than I have briefly discussed, but visual snow, floaters, black dots can happen from hypertension. When one has a hypertension crisis they need to be placed in an ICU and receive IV drugs.

I doubt hypertension is a common cause for VS (not to deny your case). Most people with VS either have it since birth/early childhood or develop it in teens or young adulthood, some for no reason, some due to stress. That's usually not the age you have problems with blood pressure. Also, people with VS in general have normal eyes. If hypertension was a common cause, then people with VS should in general not have healthy eyes.

 

[threefirefour]

Hey Sevv, maybe the Minnesota device will help with your VS? It helped eliminate @kelpiemsp's.

 

[Greg Sacramento]

@Sevv Place 'hypertension crisis and eye floaters' or any other associated subject matter into an internet search and you will see links to hundreds of professional articles and studies. Some of these links discuss who are more acceptable to get hypertension and those having tinnitus is mentioned.

In the emergency room, I have seen so many with hypertension with also having tinnitus that see floaters, black dots and/or have other eye and vision problems - needing both emergency and non urgent care. We always had eye doctors on call 24/7.

A hypertension event, moment or crisis can be from a quick sudden emotional event that can cause eye and vision, optic and retina problems. Blood pressure does not always need to be high to have a hypertension event. People that have strokes or mini unnoticed strokes from a quick sudden increase in blood pressure often will see black dots, floaters and sometimes obtain retina or optic nerve damage.

 

[Sevv]

Hey Sevv, maybe the Minnesota device will help with your VS? It helped eliminate @kelpiemsp's.

Thanks for reminding me. Yeah, he said that his VS was significantly diminished (not sure though if it was due to Minnesota device or Lenire, I thought he used both?). Though I don't know how his initial severity was, it makes me optimistic. It's a liveable condition for the moment, I'm getting more and more used to it. In fact, I'm doing well enough that I can laugh about getting it.

@Sevv Place 'hypertension crisis and eye floaters' or any other associated subject matter into an internet search and you will see links to hundreds of professional articles and studies. Some of these links discuss who are more acceptable to get hypertension and those having tinnitus is mentioned.

In the emergency room, I have seen so many with hypertension with also having tinnitus that see floaters, black dots and/or have other eye and vision problems - needing both emergency and non urgent care. We always had eye doctors on call 24/7.

A hypertension event, moment or crisis can be from a quick sudden emotional event that can cause eye and vision, optic and retina problems. Blood pressure does not always need to be high to have a hypertension event. People that have strokes or mini unnoticed strokes from a quick sudden increase in blood pressure often will see black dots, floaters and sometimes obtain retina or optic nerve damage.

Don't really know what to respond. But seeing black dots and floaters can also be caused by physical damage to the retina (by hypertension). I don't really see a connection with visual snow, since it is a brain problem/filtering problem, not an eye problem. Floaters "caused" by VS in my opinion were there before, but the brain managed to filter it out.

 

[brokensoul]

@Greg Sacramento

My GP actually mentioned hypertension during one of my initial consultations. However it was not given much thought actually. I had no idea what it was and didn't investigate this. It didn't really register at the time, I was so shocked.

For some time now however I believe it's possible that I may have had some small stroke in my thalamus. It's just an idea, I don't know how much value this line of reasoning has. I would need to investigate it more.

I have however had extensive analysis of my eyes and no issues were found. My retinas are seemingly perfectly fine.

If you have any references worth reading, please feel free to provide them.

You worked in an ER? Do you have a medical profession?

Thanks for your input on this topic.

 

[Greg Sacramento]

@brokensoul

small stroke in my thalamus

I saved about one hundred professional articles and studies on all eye problems and causes, but I'm having computer problems, so I can't copy and transfer links at this time. A small stroke within the thalamus is mentioned in a few due to a hypertension moment or hypertension crisis. I usually have normal blood pressure, but I have hypertension moments and had a hypertension crisis from getting excited while playing a computer game where my blood pressure briefly rose very high. This caused my retina in left eye to detach. I had laser treatment, but my eye is still burry. I no longer have VS or see floaters, but I still see black dots moving around in sunlight and red lighting in the corner of the eye when in darkness. The hypertension crisis that I had also caused my abdominal aortic to enlarge which is serious. 4% of men over 65 die from this and 75% of them also had a neuro disease where there is more than normal age white matter within the brain. My enlarged abdominal aortic caused a thumping sound and this also slowed blood movement and caused blockage in my carotid and jugular veins and that has caused humming. My white matter increased in the last year. The hypertension crisis that I had also damaged my kidneys and other organs. It takes forever to pee. My stomach often hurts. I also have constant forehead pain and eye pressure pain, even with normal eye pressure. I can't take hypertension meds, because it raises my T to an insane level.

@Sevv I think that we are on the same page. VS no doubt can be related to other factors other than hypertension. In an article written by a neuro eye and brain researcher, he said that the eyes are like a wheel. Some wheels has processing movement due to a motor. For living species, the motor is the brain and heart.

For the computer guys.
My computer is acting slow and not performing well. I have a total of about 2000 links of medical articles in save. Are these links considered files that may be slowing down my computer? I have used 2/3 of my memory and my computer download speed is 18 Mbps. Upload speed is 0.86 Mbps.

 

[Greg Sacramento]

An ophthalmologist can do eye exams and laser treatment for a detached retina, but they won't discuss cause in detail with any of the problems that we are discussing here. A referral to a neuro ophthalmology team is needed from an ophthalmologist. Usually only major medical hospitals and university hospitals offer this. Examination takes six to eight hours. One must have a MRI, other tests and complete medical history in hand for visit. Before the visit, there is usually communication from them with all your doctors.

An ophthalmologist did my laser treatment. Then in a week I was seen at an university medical hospital - department of neuro ophthalmology and brain study. This team did not mess around. To them VS, floaters, spiders, lighting, black dots, eye pain, headaches was required life emergency examinations.

Bottom line - Family history of hypertension and stroke was of major concern. Discussion - 1000 things including - enlarged abdominal aortic, kidney function, blood pressure - continuous, blood tests, white matter, headaches, neck problems, artery and vein discussion, posture, diet, medications and tinnitus/pulsatile tinnitus - these were of major discussion. Most of all was hypertension, getting upset quickly and depressed thoughts. Interesting enough was that they believed if one talked suicide with a neuro disease, then white matter is most always present from high blood pressure hypertension. AND if one has tinnitus, high blood pressure hypertension will increase it.

Medication discussion involved cause. Non eye meds included IV steroid therapy and Labetalol, but a small amount of Alprazolam was discussed. Tablets of 0.5 Mg cut down to 0.25 or even 0.125 taken before sleep and if needed once during the day. The belief is that a very small amount of Alprazolam is better than a larger dose.

 

[Sevv]

I've had moderate to significant visual snow since ~1999, it's been basically stable since ~2001 and I almost never think about it except when people post threads like this. Then I realize, "oh yea my entire visual field is a constant haze of static, mis-triggered line and shape recognition, afterimages and other random artifacts, wow".

For whatever reason, after about ~10 months I was able to habituate the VS in a way that never really clicked in for me with tinnitus. It's not that it got better; it also hasn't been progressive. It's just there, it's part of how my visual processing works, and mostly I see around and through it.

If I start really focusing on it, it will begin to blend with my mind's eye and conscious imagination and I will start to see forms in the noise/static; just boring stuff, horizontal and vertical lines mostly, sometimes faces. The human optic nerve has a bunch of layers of pattern recognition that happen before information gets to the prefrontal cortex, and my armchair neurologist's guess is that hyperactivity in those neurons is part of what's going on in VS. But, ultimately, it's just like tinnitus: excess neuronal activity not being filtered out, and clouding a percept input.

tl;dr after 20 years my best advice is live your life and do your thing, and try to just let the VS do its thing. If my career depended a lot on being able to identify stars at night with my naked eye, I'd be in trouble, but staring at text and faces on screens 35-45 hours a week is fine.

Hey @linearb, just a short question: I've recently had some worsening of my T. If I remember your history right, you had a significant worsening of your T around 2010. That didn't worsen your VS, did it? Would ease my mind a bit because for quite a few people in here, worsened T resulted in worsened VS. I haven't had progression in the past 2 weeks since my spike fortunately and I manage to stay somewhat calm even if rehabituation will take time.
Thanks for your help. I would be happy to keep this mild, hardly noticeable VS...^^