Will a Hearing Loss Cure Also Cure Visual Snow Syndrome?

Very early symptoms started around 1-1,5 months after getting tinnitus. Then new symptoms gradually kept starting, the last being trailing in mid August. The only symptom that might have gotten worse after appearing was the snow itself (around July), though that might only have been the effect of stress.

I remember a study saying that in chronic tinnitus sufferers (well, can't say that I really "suffer" at the moment) the brain is generally always active and rarely at rest, which makes sense because what makes you forget tinnitus and visual snow is being constantly distracted, be it even something small like looking around. So essentially I just tried to live my life normally and I gradually got used to both conditions and I don't notice them as often (that goes even for trailing). As a result I am happy, no depression, very low anxiety, but I have never truly being able to relax since the onset of tinnitus since I'm constantly tuned into something. It might bother me now and then because it makes life a bit more tiring, but it's an ok state to live with. What is important is to accept your situation. Eventually it will feel normal. Fighting it is useless, as we, unless we're lucky and have spontaneous remission, are going to live with it for the next 5-30 years, depending what treatments yield results for our condition. For myself I assume that tinnitus or hearing loss treatments should be able to improve VS symptoms since - according to the video you posted - tinnitus and VS are located in the same part of the brain and seemingly share the same underlying mechanism.

There's people with worse symptoms than us two who also got habituated, so in all likeliness you should get there too (user Linearb for example, or Matthew Renze which you can search on youtube).

 

Thank you, this is very reassuring, I don't have the trailing and I'm kind of horrified to get it since I love reading so much, does it ever affect you when watching tv or reading?

 

No visual snow here, though I read a few hours about it when I encountered the phenomenon during my tinnitus research in the first months. The articles there mentioned a link between tinnitus and visual snow as well, pretty much calling them twins.

Let's assume for a moment that a device like Lenire would eventually cure tinnitus completely. I'd expect that this specific treatment would not have an effect on visual snow, but it makes sense that a similar approach could help. In this case, equip a timing-dependant minor shock device to the tongue and instead of putting up a headset with sounds, watch a one-hour video each day with specific repeating patterns of visual input.

Alternatively I could be spouting nonsense here, but those are my thoughts...

 

Not at all. It felt very weird at the beginning, but I don't notice it all that much. Trailing has no effect on those activities, afterimages can if they are severe (which I am far from).

 

My personal understanding today is that Visual Snow Syndrome is perhaps caused by a dysfunctioning of the thalamus. The clue is in the combination of tinnitus (auditory) and visual snow (visual) symptoms. Therefore it seems to me that it is likely in a central place in your brain where both signals pass.

The Visual Snow Initiative has recently made a video which hints at this possibility as well.

Link Between VSS and Nervous System?:

Has any link been identified between VSS and...

The thalamus has inhibitory and excitatory neurons for a whole set of nuclei, each with its distinctive role to process sensory input signals. Some neurons are probably out of synch or the inhibitory neurons are somehow no longer working properly in the nuclei responsible for visual and auditory thalamocortical processing (see also thalamocortical dysrhytmia).

The Thalamic Structure:

Lecture 8. The Thalamus Structure, Function...

The thalamus is a cortical distribution center which processes different sensory input signals and sends them to the respective cortices. If that signal is somehow not properly modulated (filtered) it will overload that particular cortex of your brain, because the ‘central gate’ is dysfunctional and continuously sending all input information through in an unfiltered way. Many VSS patients complain about head aches and fatigue and I supect this is simply a consequence of the non-stop hyperactivity. PET scans show hypermetabolisms in the brains of VSS patients (see study on hypermetabolism in lingual gyrus and a more recent study is saying there are actually several hypermetabolisms).

It is possible that we had mini infarct in the thalamus or some minor physical damage. It is also possible that there is a pharmacological disruption (less likely). However it is perhaps more plausible in my opinion that there is some form of maladaptive neuroplasticity as a consequence of hearing damage (such as cochlear neuropathy or synaptopathy). The latter seems plausible, since there are so many anecdotal reports about people getting hearing damage, tinnitus and later on develop Visual Snow.

I remember that Dr. Susan Shore made a comment in some interview about deconnected nerves making new (faulty) connections (neuronal pathways) to a different area of the brain. Maybe some neurons are consequently interrupted from their actual intended function, because of this rewiring, impacting our filtering capability.

The visual symptoms that we see are not necessarily abnormal, but we see them all the time without looking for them and that is abnormal. It’s what makes this confusing to many people. Doctors will claim it’s normal to see BFEP, but the extent to which we experience this is absolutely not normal. Hence why the VSS symptoms list explicitly states ‘excessive BFEP’. Seeing a floater from time to time under specific lighting conditions is normal, seeing 30 floaters throughout your field of vision non-stop inside or outside is definitely a VSS symptom. The same goes for visual snow (posphenes) itself, some people can notice it if they really focus hard in the dark or on a solid surface, but it’s not normal to see a constant visual static non-stop wherever you look.

At this time it seems very hard to speculate on the question if restoring hearing will alleviate visual snow. We don’t even know if restoring hearing will alleviate tinnitus. It’s the prevailing hypothesis, but even experts don’t really dare to make any hard statements on that. We hope so indeed.

If the Visual Snow is a consequence of hearing damage, and if we can fix all hearing issues, then it will still be a question if the maladaptive neuroplasticity would reverse afterwards retoring the thalamocortical inhibitory function.

Disclaimer: This is my understanding today and it might be wrong. If anyone has a better theory, please let us know.

 

I’m new here. Do we have a list of Tinnitus Talk users that actually have VSS?

@Sevv @Defiant-Decay @linearb
@threefirefour @JohnAdams

 

There was a poll somewhere, where out of 40 members 20 had VS if I remember correctly.

 

@Zeneth @AVIYT @Matty1996

Do you know which Tinnitus Talk users also have Visual Snow Syndrome?

I’m trying to get an idea how many people on Tinnitus Talk have VSS.

 

You probably have seen this video already by Matthew Renze:

Visual Snow Syndrome and its relationship to Tinnitus:

Visual Snow Syndrome and Its Relationship to...

A few more links about the link between VSS and Tinnitus:
http://www.tinnitusjournal.com/articles/visual-snow-syndrome-and-its-relationship-to-tinnitus.html

https://journals.lww.com/thehearing...Visual_Snow_May_Tell_Us_About_Tinnitus.9.aspx

https://www.listen-2-life.com/blog/link-between-visual-snow-syndrome-and-tinnitus/

https://pdfs.semanticscholar.org/be01/a6b139d5854013c76659dcde506b846651b3.pdf

 

FWIW, I have it, too. Got it around the time I got tinnitus.

 

Thanks for letting me know. I’d like to get more insight into how many VSS people we have here on Tinnitus Talk.

Do you have all or most of the symptoms?

Have you studied this subject? Any opinion on my theory I wrote in above post (about the thalamus)?

 

Initially (about a year ago), it was nuts. I had very bad strobing in low light, tracers and very heavy pink/white visual snow. In the day, it was only visible when i closed my eyes (I think I always had that part but much more mildly--maybe that's normal?).

What's weird is, at this time of onset, I had very, very mild tinnitus (2/10). I actually thought it was just faint outside house noises.

My tinnitus gradually got louder (8-9/10 easily at its worse but then settled back down to where it usually is now (5/10), and my VS got better, too.

Currently, I have zero strobing or tracers but still have quite a bit of visual snow (probably 50-60% of onset levels).

I only ever notice it at night unless I consciously think about it (that's how mild it is in the day). It always appears as pink/red and white static and it's bad enough at night where I cannot see stars very well at all.

I think the thalamus theory makes complete sense and I'm really glad to see that research is being done for this!

 

I wanted to add to this, @brokensoul . you have given me a lot to think about. I saw a neuro-ophthalmologist last summer and he had seen a lot of visual snow and even went to a conference where it was heavily discussed.

A few things he told me:

1) these patients were initially not believed and that's why research has lagged, unfortunately. But it is a big topic now and he expects big developments soon (he wouldn't be specific w me though).

2) From his experience, close to 100% of VS sufferers have some sort of migraine disorder (classic, vestibular, ocular, etc) and VS is analogous to an aura that doesn't go away.

I have been reading about thalamus hyperactivity and there seems to be a connection with migraines so it all seems to tie together.

3) He said over a long time line (e.g.. 10 years), almost everyone's VS improves quite a bit. He has never seen it fully resolve, but often sees it get to the point where it's not at all bothersome (this happens much more often than it doesn't, he said)

4) sometimes acetazolamide can make a big difference in visual snow.

As acetazolamide increases thalamus blood flow, possibly this is why. He wrote me a script but I didn't fill it because acetazolamide can be ototoxic over the long term and I didn't want to risk damage even at a smaller dose. All my hearing problems resulted from ototoxicity so I'm especially paranoid though.

 

Always nice to hear that it is a big topic now and that there will be big developments soon, but sounds too good to be true to be honest. It seems like there is very little research ongoing. Luckily VSI exists and is pushing for more awareness, research and potential treatments.

I can relate to the migraine disorder being part of it. It seems to be the case for many sufferers that there is a level a head aching involved here somehow. It started at the same time as all my symptoms. I don’t know what’s going on in my brain, but it feels out of balance, hyperactive, stressed, degraded, ... and simply hurts to some degree. It scares me to think this is how my life is going to end.

In regards to the aura, I’m not sure about that. I know it was initially often misdiagnosed as a migraine with aura, which to me it definitely isn’t. Having already investigated this, it seems to me that migraine with aura is having part of your field of vision being blocked out (seeing coloured or grey blobs in your vision). I’m not a doctor, maybe there is a connection, but I’m not seeing it at the moment.

Interesting. That is based on his medical experience with actual VSS patients? My research rather indicates symptoms mostly stay the same for most people and for a minority they actually increase (degenerative VSS). I hope I’m wrong as that would give me some hope that the brain can repair this condition, but I doubt it. If it’s caused purely by a dysfunction in the thalamus unrelated to another condition (such as hearing loss), then it’s perhaps possible. Patients with thalamic stroke can recover over time (takes many years and lots of therapy). In the other case if it’s a consequence of hearing damage through maladaptive neuroplasticity it’s probably not reversible without fixing our hearing.

In either case, they are words of hope and I thank you for that. I wish he provided more info, so I felt more reassured. I can’t help being skeptical.

I haven’t heard about this drug during my 8 months of research into VSS.

I’ll be honest, I’m scared to take anything these days. My VSS with tinnitus is likely due to the medicinal ototoxicity as well. If my tinnitus got any worse than it is today, I would instantly take the exit.

Still, very interesting input, as indeed it points again to the thalamus. I believe the thalamus is also the main problem in tinnitus. I suspect tinnitus and VS are the same problem at the level of the brain, just different damaged/affected nuclei in the subcortical thalamus.

Are there any studies on it? How did he know about this? Have they actually experimented with it? Are there any reports on it? I’ll need to do some digging, when I find some energy.

I did quickly look into the drug itself and the extensive list of side-effects are worrying. The potential severe side-effects are downright scary (like Stevens Johnson Syndrome).

If however VSS is caused by let’s say a thalamic aneurism or a partial stroke, maybe it could actually help to restore that part of your brain.

Very interesting input. Thank you so much.

If you ever find out or hear anything new or interesting about VSS, please let me/us know. I’ll be very grateful.

 

I would have liked more specifics but it's very hard to get all that much info crammed into a doctor's visit when you have a million questions and they have a certain time allotment. I would have liked to follow up but that doctor (Brad Farris was his name) retired a few weeks after my initial appointment.

That is what he said. And he said it was based on his own medical experience. He said quite a few of his patients who had bad VS now have to look for it. I wish I had asked him if it in any way corresponded with diminishing of tinnitus.

Same. My genome (ran my DNA through Promethease) says I'm at a low risk in general for a Stevens Johnson reaction but I still didn't want to risk the ototoxicity. I wish I had asked him for papers, etc. At some point maybe I will try to find a local Neuro-ophthamologist and ask these things. The last one was halfway across the country from me. But I will check back if i learn anything new.

 

@brokensoul, I found this.

https://www.ncbi.nlm.nih.gov/pubmed/28349350/

 

THANK YOU SO MUCH HAZEL! I can't tell you how much this means to me.

 

Can neuroplasticity be reversed?

 

If our symptoms are somehow due to maladaptive neuroplasticity as a consequence of hearing damage, then it could be reversed after fixing our hearing. It’s not guaranteed, but it’s certainly theoretically possible in my opinion.

To be honest though, I think there’s only a small chance this is somehow related to hearing damage. It could be, but the more research I do and the more people I speak to with VSS, the more it becomes obvious this is more a pure form of brain malfunctioning at the level of the thalamus.

 

Is it possible there's multiple ways visual snow can develop and the cause determines how bad it is?

 

This is 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). In this case the condition is commonly referred to as HPPD.

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. Some people claim they are born with this condition, but it’s obviously not always clear if they were subjected to some medication during pregnancy or early childhood. I did find a family where all three generations had this condition.

It is based on anecdotal reports I’ve found and direct feedback by several VSS sufferers I’ve spoken to. It is not based on scientific reports.

To answer your question, Yes I believe that in most cases where there is an external cause, it is in direct relation with the extent of the neurological damage done and extent of symptoms experienced by people with VSS.

Again, there are people with severe symptoms who were leading a perfectly healthy lifestyle and are clueless as to what happened.

At this point I’m pretty clueless myself.

 

Congrats, you might have beaten out @Bill Bauer for the most miserable and pessimistic person on this site!

 

I’ll weigh in for the sake of transparency in my tinnitus progression.

6/19–car accident, no noticeable tinnitus which I found strange immediately after airbag explosion because my ear hurt like hell and yet I heard nothing.

6/20-7/17–

• Disabling hyperacusis, doors shutting would hurt my left ear, any music was too loud, couldn’t listen to anything below a minimal volume.
  hyperacusis-related pain would give me ocular migraines that wouldn’t subside for ~1 hour after noise exposure.
• Mild tinnitus onset which sounded like construction whirring in the distance when I went to sleep. For a couple weeks I actually thought it was construction, because it was the summer. After a couple of weeks I realized it was a mild form of tinnitus that I couldn’t hear over other noises, and only heard when my head hit the pillow. I continued my job as a strength coach which probably was the nail in the coffin of allowing my ear to recover from the airbag trauma.

7/18–

• Woke up with 8/10 piercing eeee, couldn’t go back to sleep. Hell begins.
• Continue to work despite horrible hyperacusis (8/10) thinking that it will get better.

Mid August—quit my job.

• Noises hurt too much.
• Tinnitus unrelenting.
• Noticing pretty bad floaters whenever I would move my eyes.

Mid October—hospitalized for devastating tinnitus-associated insomnia.

Mid November—

• Hyperacusis was getting noticeably better.
• Tinnitus was slightly less intrusive.
• Floaters were not my primary concern so I didn’t track its progress.

Christmas—

• Hyperacusis was 3/10, could listen to music at low volumes, had been back to the gym for 2 1/2 months with 32NRR hearing protection.
• Tinnitus would spike from lifting but would go back down to baseline of 3-4/10.
• Still on heavy meds to get to sleep, but am sleeping well and feeling a little better about my prognosis.

12/27–Power lifter of similar strength drops 425lbs failing on a squat.

• Hyperacusis returns (7/10).
• Ocular migraines with loud noise returns.
• Tinnitus back to debilitatingly intrusive, 6-7/10.
• Sleep is disrupted but not as bad as the beginning.
• Floaters more numerous and apparent again, even when not monitoring the symptom.

Current day

• Hyperacusis 5/10.
• Tinnitus 5/10 but distress is lower.
• Floaters becoming less apparent.
• Ocular migraines have almost entirely abated but still get some pain behind the left eye, same side as my tinnitus.
• Sleep becomes a battle again despite stable dosing of my medication—beginning to freak out because this means tinnitus' impact on my sleep is COMPLETELY a product of its loudness and not my distress despite what neurophysiological models contend.

In summary, there is personally a DIRECT link between the intrusion of floaters, hyperacusis severity and tendency for ocular migraines, and a DIRECT link between tinnitus loudness and sleep disruption.

I have no hyperacusis or tinnitus in my right eye, no floaters or ocular migraines ever in my right eye. My unilateral presentation hopefully offers insights as to why curing hearing loss and associated tinnitus & hyperacusis may cure/alleviate VSS and other ocular symptoms. @FGG @brokensoul

 

Personally I think that the neuronal hyperactivity of tinnitus triggers VSS for some people. Since VSS is your brain's inability to filter out the neuronal firing. I developed VSS one month into having hyperacusis/increased tinnitus. So my theory is that if we can reverse tinnitus by regenerating the cochlea, then it would cease hyperactivity and thus alleviate VSS. We will know in a few years anyway.