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

Discussion in 'Research News' started by brokensoul, Jan 31, 2020.

    1. Selah1281

      Selah1281 Member Benefactor

      Location:
      Bustown, OH10
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Have you seen any reports regarding exposure to chemicals. Like getting a chemical in your eye?
       
    2. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      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).
       
    3. Andrei90
      Depressed

      Andrei90 Member

      Location:
      Seattle, WA
      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Exposure to loud music (earphones)
      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.
       
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    4. AUTHOR
      AUTHOR
      brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      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?
       
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    5. Andrei90
      Depressed

      Andrei90 Member

      Location:
      Seattle, WA
      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Exposure to loud music (earphones)
      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.
       
    6. thinlay
      Chicken

      thinlay Member

      Location:
      PARIS
      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      syndrome of costen ? not sure
      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.
       
    7. HeavyMantra
      Bugridden

      HeavyMantra Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      01/2017. Worsened 10/2018
      Cause of Tinnitus:
      Headphones (low volume long duration), shows with earplugs?
      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
       
    8. AUTHOR
      AUTHOR
      brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      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.
       
    9. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      @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.
       
    10. Skity

      Skity Member

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Noise trauma / TMJ
      Interesting, many of my problems started after Doxycycline as well.
       
    11. AUTHOR
      AUTHOR
      brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      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.

      CE40B598-4F21-4C4B-AE2A-7E923DBA5A23.png
      A6320EDB-BD38-4B05-A83E-FAA09876C747.jpeg

      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!!
       
    12. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      @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.
       
    13. mrbrightside614

      mrbrightside614 Member Podcast Patron Benefactor Advocate

      Location:
      NE Ohio, USA
      Tinnitus Since:
      July 2019
      Cause of Tinnitus:
      Acoustic trauma
      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.
       
    14. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      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.
       
    15. Andrei90
      Depressed

      Andrei90 Member

      Location:
      Seattle, WA
      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Exposure to loud music (earphones)
      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?
       
    16. AUTHOR
      AUTHOR
      brokensoul

      brokensoul Member

      Location:
      Belgium
      Tinnitus Since:
      02/05/2019
      Cause of Tinnitus:
      unknown:medication,cannabis,stress,sleep deprivation
      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.
       
    17. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
    18. Gabriel5050
      Depressed

      Gabriel5050 Member Podcast Patron Benefactor

      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Noise exposure (most likely)
      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".
       
    19. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      ERQLBXOXkAAFBj1.jpeg
       
      • Informative Informative x 3
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    20. Sevv

      Sevv Member Benefactor

      Tinnitus Since:
      12.04.2019
      Cause of Tinnitus:
      Loud concert
      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.
       
      • Good Question Good Question x 1
    21. dan
      Chatty

      dan Member

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      What kind of device is it exactly? How does it work?
       
    22. Sevv

      Sevv Member Benefactor

      Tinnitus Since:
      12.04.2019
      Cause of Tinnitus:
      Loud concert
      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...
       
    23. dan
      Chatty

      dan Member

      Location:
      Toronto, Canada
      Tinnitus Since:
      06/2011
      Cause of Tinnitus:
      Loud noise
      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.
       
    24. Allan Mcmillan

      Allan Mcmillan Member

      Tinnitus Since:
      April 30 2019
      Cause of Tinnitus:
      Acoustic shock from playing guitar with headphones
      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.
       
    25. Allan Mcmillan

      Allan Mcmillan Member

      Tinnitus Since:
      April 30 2019
      Cause of Tinnitus:
      Acoustic shock from playing guitar with headphones
      Do you have any of the physical symptoms that usually come with VS?
       

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