Visual Snow Syndrome: Proposed Criteria, Clinical Implications, and Pathophysiology

[GoatSheep]

Antibiotics have been reported by several people to have caused their VSS.

Have you seen any reports regarding exposure to chemicals. Like getting a chemical in your eye?

 

[FGG]

I see. So you do have VSS as well.

The strobe light, is probably photopsia. Did you have it during the day? It's also a symptom of VSS.

This all started after Azithromycin?

Antibiotics have been reported by several people to have caused their VSS.

No it started before Azithromycin but after Doxycycline.

I had *zero* tinnitus or hearing problems when it started. In fact music was how I coped initially. The hearing loss started after the Azithromycin.

The strobing was day and night (now gone).

 

[Andrei90]

Below is a list of Visual Snow Syndrome Symptoms which I composed from official sources and feedback of people with VSS.

Visual Snow Syndrome is a neurological condition. Research indicates it may be a malfunctioning at the level of the subcortical thalamus, more specifically in the thalamic reticular nucleus. It is a spectrum disorder with varying degrees of severity for individuals. You may have some, a lot or most of the symptoms. Each symptom can be mild, moderate or severe. Many people also have non-visual symptoms, most notably tinnitus and/or migraine. It can be debilitating if you have a lot of symptoms or if your symptoms are severe. In some cases it is progressive. As soon as you have visual snow and some other visual symptoms you have Visual Snow Syndrome.

Visual symptoms:

• Visual snow (b/w or coloured)
• Excessive Myodesopsia (eye floaters)
• Excessive Blue Field Entoptic Phenomena (blue sky sprites)
• Self-light of the eye
• Photopsia (flashes)
• Photophobia (light sensitivity)
• Palinopsia (after images and trailing)
• Nyctalopia (night blindness)
• Diplopia (double vision) or Ghosting
• Halos (around light sources)
• Starbursts (extended rays)
• Small stars
• Light beams
• Coloured blotches
• Vortex (tunnel vision)
• Glare (light overflow)
• Pattern glare (e.g. shaky lines)
• Flickering vision (heat waves)
• Pulsating vision (heart beat)
• Temporary focus blindness
• Decreased contrast sensitivity
• Decreased depth perception
• Decreased edge detection
• Closed eye hallucinations

Non-visual symptoms:

• Tinnitus
• Hyperacusis
• Head pressure/aches or migraine
• Fatigue
• Insomnia
• Tremors or muscle twitching
• Vertigo, dizziness or nausea
• Paraesthesia (tingling sensations)
• Cognitive degradation (brain fog, poor concentration, ...)

Psychological symptoms:

• Depression
• Anxiety
• Depersonalisation
• Derealisation

I have essentially all the symptoms you listed. What's worse is that they continue to progress. My tinnitus has definitely gotten louder since I joined this forum about 2 years ago. Unfortunately, my VS symptoms have kept up with the same pace. As for my hearing I don't really know. I haven't taken a test in a while but I keep having more and more trouble hearing in noisy environments. Plus hearing at a distance is getting to be an issue. I'm almost certain there's more damage unfolding to this day.

So basically hearing loss leads to tinnitus which in turn leads to VS. At least that's my experience.

 

[brokensoul]

I have essentially all the symptoms you listed. What's worse is that they continue to progress. My tinnitus has definitely gotten louder since I joined this forum about 2 years ago. Unfortunately, my VS symptoms have kept up with the same pace. As for my hearing I don't really know. I haven't taken a test in a while but I keep having more and more trouble hearing in noisy environments. Plus hearing at a distance is getting to be an issue. I'm almost certain there's more damage unfolding to this day.

So basically hearing loss leads to tinnitus which in turn leads to VS. At least that's my experience.

Unfortunately I have the majority of the symptoms as well.

Interesting that you say hearing loss leads to VSS. I'm trying to figure out if that could be true. I have found someone that was convinced that loud music led to his VSS, but that was just one person. I'm interested to hear your story if you don't mind.

Do you know the cause/trigger for you?

How did it start or evolve for you? All symptoms at once or tinnitus first?

 

[Andrei90]

Unfortunately I have the majority of the symptoms as well.

Interesting that you say hearing loss leads to VSS. I'm trying to figure out if that could be true. I have found someone that was convinced that loud music led to his VSS, but that was just one person. I'm interested to hear your story if you don't mind.

Do you know the cause/trigger for you?

How did it start or evolve for you? All symptoms at once or tinnitus first?

My VS started in 2013 as only floaters. It slowly progressed from there. One floater turned into two and so on. Then I started noticing my nighttime vision was getting worse. Glare issues turned up when it was never a problem before.

I said hearing loss led to all this because 2013 was the year I started using earphones with the volume cranked up max (Yes I was an idiot but not really in control). Depression makes you do stupid things.

My tinnitus started in late 2017. Let me clarify and say I probably had it from the very beginning aka 2013. It just wasn't noticeable at all. I remember barely picking up a noise laying in bed on some occasions. When you experience it this way you just don't react. It slowly got worse over the 4 years and I dismissed it as ambient noise or something because it wasn't intrusive.

My threshold changed dramatically around late 2017 which is when I realized what was happening. It was too late at this point despite my hearing test showing minimal damage. Regardless what the doctor may say, damage continues to accumulate long after exposure.

 

[thinlay]

A month or two ago I found the following in regards to VSS progressiveness:

"Symptom duration positively correlated both to rsFC strength of hyperconnected brain regions (p = 0.032) as well as to grey matter volume of the right lingual gyrus (p = 0.015)."

"Using a multimodal imaging approach, we demonstrate that visual snow is associated with abnormal excitability of brain regions involved in visual processing; its magnitude being associated with disease duration. This suggests that both functional and structural plasticity contribute to evolving impairments in visual snow patients."

https://ww5.aievolution.com/hbm1901/index.cfm?do=abs.viewAbs&abs=2590

If I understand this correctly, as we have the disorder for longer, this will correlate to a greater hyper connectivity in the suspected brain regions as well as increased grey matter volume in the right lingual gyrus. Doesn't this imply that it is (or could be) a degenerative condition?

Asked on Reddit & YouTube, but got no answer.

I do not think for several reasons.
The definition of degenerative disease says:

"Degenerative diseases are diseases (often genetic) in which one or more organs are progressively degraded. The causes can be the accumulation of biological products or toxins as well as the prolonged absence of a biological substance which then leads to progressive degeneration of the organs concerned. "

Firstly, VSS is not a genetic disease, according to the link you put above it is a limited number of neurons involved.
In addition it is a well defined area of the brain so it can not progress or even continued to deteriorate.
So the term degenerative disease is wrong.

 

[HeavyMantra]

Interesting thread.

People can also get something very similar to VSS from psychedelic use, and interestingly enough many of these people also experience tinnitus. In many cases the only difference between VSS and HPPD is that the onset of HPPD can be very rapid and directly caused by psychedelics

I got tinnitus about 2-4 years after I got mild VSS. I think my VSS was caused by psychedelics but I also have poor vision in general and have had floaters since birth.

I'm pretty habituated to my VSS, I can go weeks without thinking about it and I honestly don't care much when I do. Writing this though, I notice that it's pretty intense

 

[brokensoul]

Interesting thread.

People can also get something very similar to VSS from psychedelic use, and interestingly enough many of these people also experience tinnitus. In many cases the only difference between VSS and HPPD is that the onset of HPPD can be very rapid and directly caused by psychedelics

I got tinnitus about 2-4 years after I got mild VSS. I think my VSS was caused by psychedelics but I also have poor vision in general and have had floaters since birth.

I'm pretty habituated to my VSS, I can go weeks without thinking about it and I honestly don't care much when I do. Writing this though, I notice that it's pretty intense

Based on my personal research:

Potential triggers or causes of Visual Snow Syndrome (VSS):

Physical problems leading to brain damage and/or maladaptive neuroplasticity:

- Physical trauma: head and neck injuries
- Thalamic stroke
- Hypertension
- Hearing damage (can lead to thalamic maladaptive neuroplasticity)

Toxic substances and/or toxic lifestyle leading to neurotransmitter disruption or apoptosis, neurochemical imbalance and/or maladaptive neuroplasticity:

- Prescription medicine: anti-depression (SSRI), anti-anxiety (benzodiazepines), antibiotics (penicillin, mycin family) and possibly more.

- Recreational drugs: hallucinogens such as LSD or derivatives, research chemicals, DMT, MDMA, Psilocybin and possibly also non hallucinogenic psychedelics such as cannabis (THC).

Less obvious, but also reported:
- Severe (prolonged) stress
- Severe (prolonged) anxiety
- Severe (prolonged) depression
- Severe (prolonged) sleep deprivation
- Severe panic attack
- Psychological trauma

For some people however there seems to be no apparent trigger (cause) and their VSS onset apparently came out of the blue.

It is entirely possible that there is a genetic contributing factor.

 

[FGG]

@brokensoul , have you looked into cranio-cervical instability as a cause of your weird pressure sensations? I ask because I know someone who has a similar sensation 24/7 related to his neck/skull ligament laxity and he thinks the feeling is due to csf pressure changes because he had an identical feeling immediately after a spinal tap once.

I have heard cervical issues being a potential cause of VSS. It's a long shot but I thought I would mention it at least.

 

[Skity]

No it started before Azithromycin but after Doxycycline.

I had *zero* tinnitus or hearing problems when it started. In fact music was how I coped initially. The hearing loss started after the Azithromycin.

The strobing was day and night (now gone).

Interesting, many of my problems started after Doxycycline as well.

 

[brokensoul]

@brokensoul , have you looked into cranio-cervical instability as a cause of your weird pressure sensations? I ask because I know someone who has a similar sensation 24/7 related to his neck/skull ligament laxity and he thinks the feeling is due to csf pressure changes because he had an identical feeling immediately after a spinal tap once.

I have heard cervical issues being a potential cause of VSS. It's a long shot but I thought I would mention it at least.

I've done atlas reflex therapy and was told that my C1 and C2 were not well aligned. I've done two sessions where I was 'cracked' in several ways as well as in my back somewhere along my vertebrae. Aside from some temporary physical relief it did not affect my VSS symptoms in any way.

I try to do daily neck stretches, but it does not affect my VSS.

My head pressure and head aches are predominately present in my frontal lobe and parietal lobes. This has been mentioned as well by James T Fulton (VSI vision researcher) who thinks tinnitus, visual snow and migraine are all related diseases involving the same underlying malfunctioning networks in the brain. He literally said that VSS seems to be a disease mainly affecting or involving the frontal lobe and thus not the occipital lobe as many would intuitively expect (where the visual cortex is).

I also believe the hypermetabolism in the (right) lingual gyrus is a consequence of what is happening deeper in the brain (see Dr. Goadsby's publication on VSS). It's a biomarker of the condition/disease, but likely not the cause.

I've seen a video from a Dutch man who underwent a SPECT scan and it clearly showed that there is much more ongoing than one hypermetabolism in the visual cortex.

That does not happen when you have cochlear damage imo, this is a different animal. This guy has all the same symptoms as me (full blown VSS with tinnitus and migraine).

My brain is fried. I know it. I feel it every second of the day.

I will probably see to undergo extensive neurological testing in the coming months after I've dealt with some personal things.

My EEG already confirmed brain wave anomalies, hyperactive and underactive zones and thalamocortical dysrhytmia, but I can still do MRI, FMRI, CT, PET and SPECT and see how much of a mess my brain is.

@AVIYT, hey man, I follow all your videos on tinnitus and visual snow and check the comments. You mentioned somewhere you would try to go for a SPECT scan. Have you done this already? If so, I would love to know what results you have got. You explained your MRI was normal, right? What neurological exams have you done so far? Thanks in advance!!

 

[FGG]

@brokensoul , if you actually had cranio-cervical instability, any manipulation including stretches would make it worse because the problem is ligament laxity. You would diagnose this with a standing MRI.

 

[mrbrightside614]

@brokensoul , if you actually had cranio-cervical instability, any manipulation including stretches would make it worse because the problem is ligament laxity. You would diagnose this with a standing MRI.

CCI... that way lies madness. I was looking into it after my car accident and ultimately dismissed it. Chiari malformation can also be detected on standing MRI. It seems like the medical establishment for ligament laxity is as predatory and unscrupulous as the ones for tinnitus.

Pretty sure the only way to fix that is either major craniocervical fixation or an extremely good prolotherapist who'd likely have to inject through the throat to address laxity at the anterior longitudinal ligament. I imagine this would be extremely painful and could come with complications worse than the conditional complaints.

I'm pretty sure I have intertransverse ligament laxity on the left side of some of my cervical vertebrae but I've decided to let sleeping dogs lie.

 

[FGG]

CCI... that way lies madness. I was looking into it after my car accident and ultimately dismissed it. Chiari malformation can also be detected on standing MRI. It seems like the medical establishment for ligament laxity is as predatory and unscrupulous as the ones for tinnitus.

Pretty sure the only way to fix that is either major craniocervical fixation or an extremely good prolotherapist who'd likely have to inject through the throat to address laxity at the anterior longitudinal ligament. I imagine this would be extremely painful and could come with complications worse than the conditional complaints.

I'm pretty sure I have intertransverse ligament laxity on the left side of some of my cervical vertebrae but I've decided to let sleeping dogs lie.

You definitely don't want to go to a chiro for this, for instance but it's definitely a real medical condition. I wouldn't get this evaluated or treated (prolotherapy before surgery obviously) at anything short of a major teaching hospital. Physical therapy with someone very knowledgeable can sometimes help, too.

 

[Andrei90]

I've done atlas reflex therapy and was told that my C1 and C2 were not well aligned. I've done two sessions where I was 'cracked' in several ways as well as in my back somewhere along my vertebrae. Aside from some temporary physical relief it did not affect my VSS symptoms in any way.

I try to do daily neck stretches, but it does not affect my VSS.

My head pressure and head aches are predominately present in my frontal lobe and parietal lobes. This has been mentioned as well by James T Fulton (VSI vision researcher) who thinks tinnitus, visual snow and migraine are all related diseases involving the same underlying malfunctioning networks in the brain. He literally said that VSS seems to be a disease mainly affecting or involving the frontal lobe and thus not the occipital lobe as many would intuitively expect (where the visual cortex is).

I also believe the hypermetabolism in the (right) lingual gyrus is a consequence of what is happening deeper in the brain (see Dr. Goadsby's publication on VSS). It's a biomarker of the condition/disease, but likely not the cause.

I've seen a video from a Dutch man who underwent a SPECT scan and it clearly showed that there is much more ongoing than one hypermetabolism in the visual cortex.

View attachment 35691
View attachment 35692

That does not happen when you have cochlear damage imo, this is a different animal. This guy has all the same symptoms as me (full blown VSS with tinnitus and migraine).

My brain is fried. I know it. I feel it every second of the day.

I will probably see to undergo extensive neurological testing in the coming months after I've dealt with some personal things.

My EEG already confirmed brain wave anomalies, hyperactive and underactive zones and thalamocortical dysrhytmia, but I can still do MRI, FMRI, CT, PET and SPECT and see how much of a mess my brain is.

@AVIYT, hey man, I follow all your videos on tinnitus and visual snow and check the comments. You mentioned somewhere you would try to go for a SPECT scan. Have you done this already? If so, I would love to know what results you have got. You explained your MRI was normal, right? What neurological exams have you done so far? Thanks in advance!!

I don't even see dots with my VSS. What I experience is closer to the effect you notice when looking at rain. Look at something dark like a tree next time it rains and you'll experience what I have. Is that what you see?

 

[brokensoul]

I don't even see dots with my VSS. What I experience is closer to the effect you notice when looking at rain. Look at something dark like a tree next time it rains and you'll experience what I have. Is that what you see?

I see dynamic dots all the time across my entire field of vision. The dynamic of the visual snow creates a heat wave like vision. It's very visible even during the day, but in the dark it seems even more intense. Unfortunately I see a lot more than just visual snow and it all compounds on each other creating a complete visual mess.

 

[FGG]

Found this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6590446/

And now i am very curious. How many of us with VSS were always very susceptible to ASMR tingles? I was always extremely susceptible to them.

 

[Gabriel5050]

Just putting my experience out here: I'm 20 and had mild VSS my entire life. Developed tinnitus around the time I turned 18. I have no medical expertise but the link between VSS and tinnitus is a big "idk man. Could be anything".

 

[Autumnly]

 

[Sevv]

Just as a reminder: The University of Minnesota Device has been able to completely abolish severe tinnitus and reduce visual snow of our user @kelpiemsp (it targets the thalamus/thalamocortical dysrhythmia directly). Unfortunately it's still in the trial phase and will take many more years until it is released via Neuromod.

 

[dan]

Just as a reminder: The University of Minnesota Device has been able to completely abolish severe tinnitus and reduce visual snow of our user @kelpiemsp (it targets the thalamus/thalamocortical dysrhythmia directly). Unfortunately it's still in the trial phase and will take many more years until it is released via Neuromod.

What kind of device is it exactly? How does it work?

 

[Sevv]

What kind of device is it exactly? How does it work?

Hey Dan. Unfortunately I don't know anything specific. I just have the information of their website:
http://soniclab.umn.edu/research/neural-beamforming-tinnitus

Ah yes, would be great if that device were on the market already. Unfortunately life isn't so nice to us people here...

 

[dan]

I read it, it's just another Lenire/Susan Shore/Vagus/Trigeminal nerve stimulation treatment.
Listening to white noise on headphones while stimulating nerves.
Lenire already killed Allan1967 and previous clinical trials with Vagus nerve stimulation failed.

Maybe I'm missing something here?

Neuromodulation techniques are just another form of sound therapy.
White noise on steroids...
Severe tinnitus is often reactive - it does not like white noise... and messing with that us dangerous.

 

[Allan Mcmillan]

Unfortunately I have the majority of the symptoms as well.

Interesting that you say hearing loss leads to VSS. I'm trying to figure out if that could be true. I have found someone that was convinced that loud music led to his VSS, but that was just one person. I'm interested to hear your story if you don't mind.

Do you know the cause/trigger for you?

How did it start or evolve for you? All symptoms at once or tinnitus first?

Same story here. My visual snow started around the same time as tinnitus. Got worse two weeks ago which gave me symptoms of nausea and fatigue along with depersonalization after being exposed to loud music for a whole night. The visual snow has calmed down a bit as my tinnitus improved but other symptoms still present.

 

[Allan Mcmillan]

I have essentially all the symptoms you listed. What's worse is that they continue to progress. My tinnitus has definitely gotten louder since I joined this forum about 2 years ago. Unfortunately, my VS symptoms have kept up with the same pace. As for my hearing I don't really know. I haven't taken a test in a while but I keep having more and more trouble hearing in noisy environments. Plus hearing at a distance is getting to be an issue. I'm almost certain there's more damage unfolding to this day.

So basically hearing loss leads to tinnitus which in turn leads to VS. At least that's my experience.

Do you have any of the physical symptoms that usually come with VS?

 

[Autumnly]

Structural and functional footprint of visual snow syndrome

Abstract
Patients with visual snow syndrome suffer from a continuous pan-field visual disturbance, additional visual symptoms, tinnitus, and non-perceptional symptoms. The pathophysiology of visual symptoms might involve dysfunctional visual cortex. So far, the extra-visual system has not been investigated.

We aimed at identifying structural and functional correlates for visual and non-visual symptoms in visual snow syndrome. Patients were compared to age- and sex-matched controls using 18F-2-fluoro-2-deoxy-D-glucose PET (n = 20 per group) and voxel-based morphometry (n = 17 per group). Guided by the PET results, region of interest analysis was done in voxel-based morphometry to identify structural-functional correspondence. Grey matter volume was assessed globally.

Patients had corresponding hypermetabolism and cortical volume increase in the extrastriate visual cortex at the junction of the right lingual and fusiform gyrus. There was hypometabolism in the right superior temporal gyrus and the left inferior parietal lobule. Patients had grey matter volume increases in the temporal and limbic lobes and decrease in the superior temporal gyrus.

The corresponding structural and functional alterations emphasize the relevance of the visual association cortex for visual snow syndrome. The broad structural and functional footprint, however, confirms the clinical impression that the disorder extends beyond the visual system.

 

[Greg Sacramento]

@Autumnly I have seen 4 of the 5 authors of the study that you posted above. My tests show the same grey matter and cortex changes, so I completely understand the context of this article and footnote link references. Conclusion for me is same, but explained cause was defined from my first onset experience, which was my limbic system - complex system of nerves and networks in the brain, involving several areas near the edge of the cortex concerned with instinct and mood. It controls the basic emotions (fear, pleasure, anger) and way more so with auditory damage or possible associations with pre auditory noticed concerns. I understand the limbic system and needed control responses, but it difficult for those with tinnitus/pain.

 

[Greg Sacramento]

Continued from above...

When I first developed eye problems that included all sorts of visual problems, I saw local Ophthalmologists that did laser surgery and all was fine. Then two weeks later, eye problems developed again. I then had evaluation at UC Davis and was then send to the U of SF where eye surgery was done over a week ago. I was told not to use eye drops, do wear eye sun glasses and not to get tense. I got tense a couple of times since and my surgery failed.

My local Ophthalmologist is not a neuro Ophthalmologist, but he is very understanding and has association with my U of SF specialized eye doctors. His discussion with the U of SF note that hypertension blood pressure with limbic response is my cause and very common.

One doctor mentioned that most of those that have difficulty with the virus, also have health problems and 50% of them have hypertension. This is also stated by health officials.

Eye problems: Genes play a part. Also noted enlarged ventricle and extra CAF spaces secondary to parenchymal volume loss. Often hypo density in the periventricular and subcortical where white gray matter is present. This can also sometimes relate to chronic microvascular ischemic change.

Mentioned was all of this often happens to good caring people. People that don't like disruption. I'm being very vague, but all here with tinnitus, physical problems, eye problems and pain deserve a hug and understanding.

 

[Autumnly]

For Those Waiting for the Visual Snow Initiatives Project (VIP) Launch
Dec 9, 2019

Q: Where is it?
The team at VSI is working around the clock to optimize the VIP experience.

Q: What exactly is the VIP?
It is a visual experience program designed to reduce VSS symptoms. It will be accessible via a desktop computer through our website. It will require about 10–20 minutes of viewing visual imagery per day.

Q: Why is it taking so long?
The VIP involves CGI, computer experts, as well as a collaboration between neuroscientists and researchers. The VSI wants to provide an optimum user-friendly experience.

Q: What is the charge or fee?
When launched, the VIP will be free for everyone.

Q: Will this work for everyone?
No, it will not. In trials, it has helped some reduce a cross section of their VSS symptoms. We hope this will be a helpful form of therapy. But rest assured, if it does not work for you, all other areas of VS research are being covered. As this information develops, you can look forward to more updates on our website and through our social media channels. There will always be other options and opportunities.

Q: When will VIP be available?
As of now, we are expecting late January or early February. We apologize for the delays. Oftentimes, they are to be expected as we learn more about this condition and try to create an optimum experience. In addition, if there is another promising area of research worthy of directing attention to, we will refocus our energies to achieve the best results for all.

We thank you for your understanding and patience.

 

[Mr.tdog15]

Below is a list of Visual Snow Syndrome Symptoms which I composed from official sources and feedback of people with VSS.

Visual Snow Syndrome is a neurological condition.

I've got tingling sensations and muscle weakness from my antibiotics after 2 months of taking them. I've Also got tinnitus but I've got nothing wrong with my eyesight nor have I ever had any eye floaters or anything
Does this mean I could develop visual symptoms?