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

[brokensoul]

This study is about Visual Snow Syndrome, but it also implies tinnitus. I'm honestly more and more convinced that for a certain subtype of tinnitus patients they may have the same underlying condition. For some time I've felt that the key to understanding tinnitus on the neurological level is in visual snow. Visual snow teaches us about tinnitus and vice versa.

For those who do not know, the visual symptoms of visual snow syndrome have been described as a thalamocortical dysrhytmia of the visual pathway exactly like tinnitus has been described as a thalamocortical dysrhytmia of the auditory pathway.

The whole publication is interesting, especially for those who have VSS, but I want to specifically point to the following paragraph describing the role of the Thalamus in this syndrome:

One pathophysiologic theory regarding the origin of visual hallucinations has emphasized the role of the thalamus. Ffytche used photic stimulation to induce Purkinje hallucinations (colors, geometrical shapes, motion) in volunteers while monitoring them with fMRI and EEG. He found a wide network of areas with increased brain activity including the bilateral ventral occipitotemporal regions centered on the fusiform gyrus, extending medially to the lingual gyrus and laterally to the inferior temporal gyrus. Interestingly, while the occipitotemporalactivity was significantly increased during visual hallucinations compared to control conditions, the primary visual cortex (V1) was not significantly more active, and the lateral geniculate nucleus (LGN) was actually significantly decreased compared to controls. Ffytche hypothesized that during the visual hallucinations, the LGN had switched from its tonic mode where retinal input is sent to the cortex in a proportional fashion) to its burst mode (where input and output become partly
disassociated), in effect creating a "thalamic blindness". He theorized that this burst mode might create a transient LGN de-afferentation allowing hallucinations to form in a fashion similar to CBS hallucinations. Some authors have suggested that the coherent low-frequency thalamic oscillation and the subsequent reduced lateral cortical inhibition create a "thalamocortical dysrhythmia" that might underly multiple neurologic processes including tinnitus and phantom limb pain, in addition to visual snow.

https://www.researchgate.net/public...ria_Clinical_Implications_and_Pathophysiology

 

[brokensoul]

As you may know or not, the majority of VSS patients (about 65%) also experience tinnitus. Tinnitus is an official symptom of VSS.

VSS patients experience visual disturbances (some say hallucinations) and all VSS patients have had extensive ophthalmological testing which all demonstrated that there were no optic defects whatsoever. All VSS patients have perfectly functioning eyes, yet they all experience various visual problems. All researchers have no doubt that the source of the problem is located in the brain. I have done all ophthalmological tests possible and no issues whatsoever were found.

When we look at tinnitus, we do not have the possibility to look into the cochlea and do electrophysiological tests that demonstrate that the inner ear is functioning perfectly (within expectations for your age). This effectively creates a blind spot and makes it impossible to being able to exclude the inner ear as the source for the auditory problem we have and creates confusion and speculation whether it is the source of tinnitus or not.

However if visual snow and tinnitus are indeed the same problem, but for different neuronal pathways, it wouldn't surprise me that for some people with tinnitus it is also rather a neurological problem, than a cochlear problem.

 

[Bartoli]

As you may know or not, the majority of VSS patients (about 65%) also experience tinnitus. Tinnitus is an official symptom of VSS.

VSS patients experience visual disturbances (some say hallucinations) and all VSS patients have had extensive ophthalmological testing which all demonstrated that there were no optic defects whatsoever. All VSS patients have perfectly functioning eyes, yet they all experience various visual problems. All researchers have no doubt that the source of the problem is located in the brain. I have done all ophthalmological tests possible and no issues whatsoever were found.

When we look at tinnitus, we do not have the possibility to look into the cochlea and do electrophysiological tests that demonstrate that the inner ear is functioning perfectly (within expectations for your age). This effectively creates a blind spot and makes it impossible to being able to exclude the inner ear as the source for the auditory problem we have and creates confusion and speculation whether it is the source of tinnitus or not.

However if visual snow and tinnitus are indeed the same problem, but for different neuronal pathways, it wouldn't surprise me that for some people with tinnitus it is also rather a neurological problem, than a cochlear problem.

Most researchers seem to agree on that since at least the late 90s. Some do focus on the ear as they believe restoring peripheral input will help with tinnitus. But it's still essentially the brain that generates the tinnitus signal in these models.

The way I see it, there must be at least some different subtypes as there are people whose tinnitus goes away temporarily when being administered lidocaine. I wonder if they would all originate from jaw misalignment, tension etc...

I find there has to be more research into subtyping. Coupling the tinnitus symptoms and history with the possible cause. This should give way to better diagnosing and treating tinnitus. As you say it's essentially a difficult problem to treat or even subdivide. You can't look into the cochlea and have to rely on self-reporting of the patients.

The European UNITI program is a good start to gather the big data. It's strictly on tinnitus though, not VSS. If there is such a big link I hope they include it somehow in that study.

 

[Skity]

I believe that curing tinnitus will result in curing VSS, at least for some.

 

[thinlay]

Hello, I would like to know if the treatment of VSS will be as complicated for example as that for tinnitus?

I may also have seen many testimonials that said that over time their vs had greatly decreased with all the symptoms that accompany it.

 

[brokensoul]

Hello, I would like to know if the treatment of VSS will be as complicated for example as that for tinnitus?

I may also have seen many testimonials that said that over time their vs had greatly decreased with all the symptoms that accompany it.

I can't answer your first question. We don't know what causes it, but for those people where VSS and tinnitus have the same underlying cause (e.g. malfunctioning thalamus) it will obviously be the same. All my symptoms started at the same time, so there must be people out there who have the same underlying condition, but only have tinnitus and vice versa. Some people only have visual symptoms, but no tinnitus.

I have found almost zero testimonials where VSS reduced over time. Just a few rare unclear claims. No, the very large majority never sees any improvement in their VSS symptoms and often there is even a slight worsening over the years. Most people claim however that their symptoms remained more or less the same over many years, even decades. In some cases it is progressive and it becomes significantly worse over the years.

To date, I have not really found anyone with VSS that improved. The only place I haven't looked is on the facebook VS support page. Perhaps there are testimonials on there, but I doubt it.

I believe however that there are people who had HPPD and did improve over time. This is however a special case of VSS (induced by drugs). It is certainly highly related as the symptoms are identical. It's possible that the damage with HPPD is different and is recoverable for some people, but in many or most cases even, it doesn't seem to resolve either.

If you know of any testimonials where people with actual VSS improved over time, please share them.

 

[thinlay]

I can't answer your first question. We don't know what causes it, but for those people where VSS and tinnitus have the same underlying cause (e.g. malfunctioning thalamus) it will obviously be the same. All my symptoms started at the same time, so there must be people out there who have the same underlying condition, but only have tinnitus and vice versa. Some people only have visual symptoms, but no tinnitus.

I have found almost zero testimonials where VSS reduced over time. Just a few rare unclear claims. No, the very large majority never sees any improvement in their VSS symptoms and often there is even a slight worsening over the years. Most people claim however that their symptoms remained more or less the same over many years, even decades. In some cases it is progressive and it becomes significantly worse over the years.

To date, I have not really found anyone with VSS that improved. The only place I haven't looked is on the facebook VS support page. Perhaps there are testimonials on there, but I doubt it.

I believe however that there are people who had HPPD and did improve over time. This is however a special case of VSS (induced by drugs). It is certainly highly related as the symptoms are identical. It's possible that the damage with HPPD is different and is recoverable for some people, but in many or most cases even, it doesn't seem to resolve either.

If you know of any testimonials where people with actual VSS improved over time, please share them.

Hello,

I am not agree with you.

Indeed there are many people who identify themselves as being cured of this syndrome even after being diagnosed.

In a Facebook group there is a lot of testimonies like that.

I think that my tinnitus and my visual snow are not linked because there was a period of 6 months between the two.
And moreover many specialists say that visual snow is not a degenerative syndrome and that on the contrary it tends to improve rather than get worse.

 

[FGG]

Hello,

I am not agree with you.

Indeed there are many people who identify themselves as being cured of this syndrome even after being diagnosed.

In a Facebook group there is a lot of testimonies like that.

I think that my tinnitus and my visual snow are not linked because there was a period of 6 months between the two.
And moreover many specialists say that visual snow is not a degenerative syndrome and that on the contrary it tends to improve rather than get worse.

I mentioned this earlier but the Neuro-ophthamalogist I saw said almost all are very improved over a ten year time frame in his clinical experience. He also got a lot of referrals from Hough (this is how I was referred) so presumably this would include people who had hearing and visual issues, too.

 

[brokensoul]

Hello,

I am not agree with you.

Indeed there are many people who identify themselves as being cured of this syndrome even after being diagnosed.

In a Facebook group there is a lot of testimonies like that.

I think that my tinnitus and my visual snow are not linked because there was a period of 6 months between the two.
And moreover many specialists say that visual snow is not a degenerative syndrome and that on the contrary it tends to improve rather than get worse.

A lot of testimonials? Can you please show me?

I honestly don't know what specialists you are referring to.

I really want this to be true, but it's not what I've learned thus far.

 

[thinlay]

I mentioned this earlier but the Neuro-ophthamalogist I saw said almost all are very improved over a ten year time frame in his clinical experience. He also got a lot of referrals from Hough (this is how I was referred) so presumably this would include people who had hearing and visual issues, too.

Could the Hough Ear pill help with VSS problems?
This is fabulous news!

 

[thinlay]

A lot of testimonials? Can you please show me?

I honestly don't know what specialists you are referring to.

I really want this to be true, but it's not what I've learned thus far.

https://overtoaila.com/2020/01/30/visual-snow-syndrome-my-journey-and-cure/

And in some Visual Snow Initiative videos there are experts who say that it is rare for the symptoms to worsen and that it is more likely to improve.

 

[FGG]

Could the Hough Ear pill help with VSS problems?
This is fabulous news!

No. Not that I know of. That's not the implication.

 

[brokensoul]

https://overtoaila.com/2020/01/30/visual-snow-syndrome-my-journey-and-cure/

And in some Visual Snow Initiative videos there are experts who say that it is rare for the symptoms to worsen and that it is more likely to improve.

I'll check your link.

I know all the VSI videos. Where did they say it is more likely to improve?

Thanks.

 

[thinlay]

I'll check your link.

I know all the VSI videos. Where did they say it is more likely to improve?

Thanks.

 

[brokensoul]

First video just confirms that for the majority there is no significant worsening over time. This is based on a survey done by James T. Fulton on the website: https://neuronresearch.net/vision/clinical/snowyvision.htm.
If you look at the comments on the video you can see several people saying it did get worse for them. I've seen a lot of testimonials on Reddit as well from people saying it got worse. To my knowledge the large majority says it remains the same more or less over the years and for some it worsens.

The second video by Dr. Khan discusses ways to manage, cope and deal with your symptoms. It's the same as Matthew Renze saying he manages his symptoms by doing yoga and meditation. Matthew does clearly state that his symptoms have not improved at all, but he's capable of reducing their impact by doing sport and so on.

It is possible though that for some it objectively improves. I had found one testimonial of a young person that said his visual snow went away after 5 years, but he provided so little detail that it was hard to be really convinced of his story.

Perhaps, due to the variability in causes/triggers, there is maybe a subtype of VSS that does actually improve over time.

I've read the link you posted and it seems that for this girl it largely improved after a few months already. I'll read it again later and see what to make of it. The few screenshots of others improving are not very convincing at first glance. Tuning out the symptoms means habituation and is not actual improvement.

I'm not denying that some people may indeed objectively improve, but at this point it seems to me to be an absolute minority.

My VSS has been consistent for 8+ months already.

Thanks for your input though, always nice to have others chime in on this subject. Feel free to share anything you may find interesting on this subject.

 

[brokensoul]

Comments on the video you posted:

"The perception of visual snow does not appear to worsen significantly following its initial appearance. It is generally not progressive. On the other hand, visual snow rarely disappears once it appears." — James T. Fulton (neuronresearch.net) and researcher for VSI

Lots of other sites state the same.

 

[FGG]

Comments on the video you posted:
View attachment 35419 View attachment 35420 View attachment 35421

"The perception of visual snow does not appear to worsen significantly following its initial appearance. It is generally not progressive. On the other hand, visual snow rarely disappears once it appears." — James T. Fulton (neuronresearch.net) and researcher for VSI

Lots of other sites state the same.

The doctor I saw also said he has yet to see it completely disappear but almost all his cases improved significantly. I wish he was not now retired because i have so many additional questions for him. I wonder if his cases got better because he tried different meds for them (though the one suggested for me is sometimes ototoxic so i didn't take it).

 

[FGG]

I searched for Reddit posts on visual snow and there are some people claiming completely giving up masturbation reduced or eliminated their VS after a few months. I would take this with a bit of a grain of salt because the No Fap people are kind of cultish and I feel like they often claim it cures anything but the thalamus has a lot of dopamine receptors so who knows? Maybe they are onto something. I assume this means no sex either?

 

[GoatSheep]

The doctor I saw also said he has yet to see it completely disappear but almost all his cases improved significantly. I wish he was not now retired because i have so many additional questions for him. I wonder if his cases got better because he tried different meds for them (though the one suggested for me is sometimes ototoxic so i didn't take it).

You also have visual snow?

 

[FGG]

You also have visual snow?

Yes.

 

[GoatSheep]

Yes.

I hadn't seen you mention it before. Did it develop simultaneously after you took the antibiotic that gave you tinnitus and your other hearing issues?

 

[FGG]

I hadn't seen you mention it before. Did it develop simultaneously after you took the antibiotic that gave you tinnitus and your other hearing issues?

I actually got it after the first antibiotic they tried (Doxycycline). This was a few months before any tinnitus or hearing issues.

 

[GoatSheep]

I actually got it after the first antibiotic they tried (Doxycycline). This was a few months before any tinnitus or hearing issues.

Wow, you really had bad luck with antibiotics! I'm so sorry.

 

[brokensoul]

Yes.

You only have the symptom 'visual snow' though, right? No other visual symptoms, right?

 

[brokensoul]

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.

 

[brokensoul]

https://overtoaila.com/2020/01/30/visual-snow-syndrome-my-journey-and-cure/

And in some Visual Snow Initiative videos there are experts who say that it is rare for the symptoms to worsen and that it is more likely to improve.

Interesting story. Happy for her that she got 90% better and resumed her life. Thanks for the link. Bookmarked.

She says her VSS was severe and started after weeks of intense head aches.

FYI. Mine didn't at all. The constant head aching started together with the visual symptoms and tinnitus. No head aches whatsoever before that. All symptoms got triggered instantly and stayed more or less at the same level since then. Nothing I've done has had any influence on them whatsoever. I'm so puzzled by what happened.

 

[FGG]

You only have the symptom 'visual snow' though, right? No other visual symptoms, right?

I have visual snow, floaters and blue field entoptic phenomenon. I occasionally get after images but not often.

Initially, I had crazy strobe light effect but that has completely resolved.

 

[FGG]

Seriously. If I get Coronavirus and a secondary bacterial infection, they are just going to have to put me down. I refuse to take any more antibiotics.

 

[brokensoul]

I have visual snow, floaters and blue field entoptic phenomenon. I occasionally get after images but not often.

Initially, I had crazy strobe light effect but that has completely resolved.

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 Doxycycline?
Not Azithromycin?

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

 

[brokensoul]

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