Hello everyone
I felt like posting this, as we have members here that want to ctb but don't really know their options about dealing with tinnitus, hyperacusis and visual snow. I am well aware that these conditions can kill you (and it's also the reason why I am currently here but I'm getting better), but it is better in my opinion if people can make an informed decision. Ear doctors are unfortunately generally useless when it comes to tinnitus and hyperacusis, and visual snow is not well known to date.
I wont go into the basics of symptoms, as probably anyone with these conditions is aware of them. I'm also not a doctor, this is just what I have learned over the past 16 months of living with this shit.
Tinnitus:
Cause of tinnitus:
Most often tinnitus is caused by hearing damage (loud noise or medication), or stress. Hearing damage does not have to show up on the audiogram because (1) most audiograms only test up to 8k hertz, while the damage might be in the 8-16k hertz range, and (2) you might have hidden hearing loss, that is damage to the synapses between the hair cells and the ear nerve, which won't show up on any audiogram. If you have moderate to severe synapse damage, you will have difficulty understanding in noisy environment, that's about the only indication you can get.
My tinnitus is making me suicidal, why shouldn't I quit now?:
If there was no solution to tinnitus except suicide or trying to life with it, I wouldn't bother writing here. There is one expensive option you have now, and probably a few cheaper ones in the coming future.
Deep brain stimulation (available now if you can pay it): There's this story on tinnitustalk about a girl from Holland with very severe tinnitus who got experimental deep brain stimulation at the AMC in Amsterdam (https://riannesreis-nl2.webnode.nl/resume/, use google translate). She had to pay it herself. It hasn't lowered her tinnitus, but seemingly took out all emotional reaction which has her life made good again. However, DBS can also reduce tinnitus volume directly, as has been strongly indicated by a US study (https://www.eurekalert.org/pub_releases/2019-09/jonp-dbs091719.php), the reduction being around 60%. So whether you get an actual reduction of the volume or just a reduction in the emotional response, DBS does help with tinnitus. The problem is, that it is not yet an approved intervention for tinnitus, so you have to pay it yourself (the girl from Netherlands set up a donation page). There's another study in the Netherlands right now, https://clinicaltrials.gov/ct2/show/NCT03976908 by University of Maastricht (not AMC Amsterdam), trying to replicate the findings from the US. If you're trying to go for DBS, you'll probably have to undergo an MRI. Since MRIs are crazy loud, you should try to find a hospital with a quiet MRI. You can phone MRI manufacturers to find out which hospitals have such quiet MRIs (example: (https://www.siemens-healthineers.co...-imaging/mri-technologies/mri-design/mr-quiet). Elon Musks Neuralink (available in 7-10? years) should be able to do the same thing as deep brain stimulation, but it will take a long time until it's here.
FX-322 (available in 2-5 years, moderate-good chance of improvement): New medicine that is supposed to alleviate damage to hearing (hair cell damage) by regrowing the hair cells. Only phase 1 has been completed yet, but the results are very encouraging that it actually works for hearing damage. Whether it will also work for tinnitus we will see once phase 2 has been completed (due to COVID-delay it will be completed in around the middle of 2021). However, there's ample indication from people getting hearing aids or cochlear implants that restoring hearing lowers tinnitus. If FX-322 gets breakthrough therapy status after phase 2 (previously unavailable medicine for serious health problems), you will probably be able to access it probably in late 2021.
OTO-413 (available in 3-5 years, moderate-good chance in improvement): This medication fixes synapse damage in hidden hearing loss, which is believed to be a contributor to tinnitus (just like hair cell damage). OTO-413 is a bit behind FX-322 and there have been no results so far, but animal models indicate that it works (for details see https://investors.otonomy.com/static-files/cdfa5ab7-2975-46cf-81a5-5e0ef5a16c15).
Hough Ear Institute pill (NHPN-1010) (available in about 4-5 years): Supposedly also regenerates the synapses between hair cells and auditory nerve. Animal models have been promising but the Institute isn't proceeding very fast with the tests at the moment. COVID doesn't help either.
RL-81 (new retigabine, available in around 7 years; thanks Karl30 for the reminder): A potassium channel modulator that is supposed to directly eliminate tinnitus. Retigabine did the same thing but was much less potent and had many bad side effects.
Bimodal stimulation (available in ? years): This has been an ongoing research field. It's essentially about stimulating the brain simultaneously with sounds and electricity (for example through the tongue) to make use of brain plasticity to reduce tinnitus. Only the Lenire system has been out for now and it helps to some degree for some, but for many it doesn't. It seemingly helps more if you don't have any hearing loss but still suffer from tinnitus. You can only access it in Ireland and Germany and costs around 2500 euros. There's also a device being developed by Dr. Susan Shore but nobody knows when she'll finally finish it. This one should work better than Lenire.
Hearing aids: If you have damage in the range up to 8k hertz, hearing aids can aid with tinnitus. If your damage is over 8k hertz, hearing aids dont help because they don't cover that range unfortunately, as the frequencies over 8k hertz are less important for understanding speech.
Plain old waiting: If you have new tinnitus, it might improve in the coming 1-3 years (studies suggest that around 60% of people have complete recovery after a gunshot injury within 12 months, with another 10% within another year-two years. See here for details https://helda.helsinki.fi/bitstream/handle/10138/27440/investig.pdf?sequence=1 page 15, 35 and 36). For some it takes a long time. Having severe tinnitus at beginning doesn't mean you can't get an improvement.
Hyperacusis:
Hearing sensitivity in general tends to get better over many months as long as you protect your hearing from loud/uncomfortable sounds (you really should buy earmuffs/ear plugs or both). If not, we can only hope that FX-322 or OTO-413 also work for hyperacusis. It is not known yet whether they work or not. It is not known whether DBS works or not.
Visual snow:
There is no known treatment at the moment. Both fortunately and unfortunately, visual snow generally stays the same once it has reached a constant level (no more worsening, no improvement). It can't be ruled out that visual snow that appears after tinnitus gets better with tinnitus treatment. I'm also very positive that visual snow can be reduced with deep brain stimulation (it's just another hyperactivity in the brain after all), but it's speculation at the moment.
What can I do now if I want to give these treatments in the next years a shot?
The usual stuff you probably heard elsewhere: Sports, yoga, meditation, etc. Essentially everything that helps with depression and anxiety. If you're looking for inspiration, I always like to post this video:
.
Dude has lived with moderate visual snow and intrusive tinnitus for the past 5 years and seems to be doing well. Theres also this rugby player: https://www.thesun.co.uk/tvandshowbiz/9426165/strictly-ben-cohen-tinnitus-unbearable-eyes-water/ who is essentially deaf because what remains of his hearing is mostly covered up by veeery loud tinnitus. There's many others out there.
So yeah, I guess one can live for some time with these problems until we have medication on the market that improves/fixes tinnitus.
Take care everyone.
I felt like posting this, as we have members here that want to ctb but don't really know their options about dealing with tinnitus, hyperacusis and visual snow. I am well aware that these conditions can kill you (and it's also the reason why I am currently here but I'm getting better), but it is better in my opinion if people can make an informed decision. Ear doctors are unfortunately generally useless when it comes to tinnitus and hyperacusis, and visual snow is not well known to date.
I wont go into the basics of symptoms, as probably anyone with these conditions is aware of them. I'm also not a doctor, this is just what I have learned over the past 16 months of living with this shit.
Tinnitus:
Cause of tinnitus:
Most often tinnitus is caused by hearing damage (loud noise or medication), or stress. Hearing damage does not have to show up on the audiogram because (1) most audiograms only test up to 8k hertz, while the damage might be in the 8-16k hertz range, and (2) you might have hidden hearing loss, that is damage to the synapses between the hair cells and the ear nerve, which won't show up on any audiogram. If you have moderate to severe synapse damage, you will have difficulty understanding in noisy environment, that's about the only indication you can get.
My tinnitus is making me suicidal, why shouldn't I quit now?:
If there was no solution to tinnitus except suicide or trying to life with it, I wouldn't bother writing here. There is one expensive option you have now, and probably a few cheaper ones in the coming future.
Deep brain stimulation (available now if you can pay it): There's this story on tinnitustalk about a girl from Holland with very severe tinnitus who got experimental deep brain stimulation at the AMC in Amsterdam (https://riannesreis-nl2.webnode.nl/resume/, use google translate). She had to pay it herself. It hasn't lowered her tinnitus, but seemingly took out all emotional reaction which has her life made good again. However, DBS can also reduce tinnitus volume directly, as has been strongly indicated by a US study (https://www.eurekalert.org/pub_releases/2019-09/jonp-dbs091719.php), the reduction being around 60%. So whether you get an actual reduction of the volume or just a reduction in the emotional response, DBS does help with tinnitus. The problem is, that it is not yet an approved intervention for tinnitus, so you have to pay it yourself (the girl from Netherlands set up a donation page). There's another study in the Netherlands right now, https://clinicaltrials.gov/ct2/show/NCT03976908 by University of Maastricht (not AMC Amsterdam), trying to replicate the findings from the US. If you're trying to go for DBS, you'll probably have to undergo an MRI. Since MRIs are crazy loud, you should try to find a hospital with a quiet MRI. You can phone MRI manufacturers to find out which hospitals have such quiet MRIs (example: (https://www.siemens-healthineers.co...-imaging/mri-technologies/mri-design/mr-quiet). Elon Musks Neuralink (available in 7-10? years) should be able to do the same thing as deep brain stimulation, but it will take a long time until it's here.
FX-322 (available in 2-5 years, moderate-good chance of improvement): New medicine that is supposed to alleviate damage to hearing (hair cell damage) by regrowing the hair cells. Only phase 1 has been completed yet, but the results are very encouraging that it actually works for hearing damage. Whether it will also work for tinnitus we will see once phase 2 has been completed (due to COVID-delay it will be completed in around the middle of 2021). However, there's ample indication from people getting hearing aids or cochlear implants that restoring hearing lowers tinnitus. If FX-322 gets breakthrough therapy status after phase 2 (previously unavailable medicine for serious health problems), you will probably be able to access it probably in late 2021.
OTO-413 (available in 3-5 years, moderate-good chance in improvement): This medication fixes synapse damage in hidden hearing loss, which is believed to be a contributor to tinnitus (just like hair cell damage). OTO-413 is a bit behind FX-322 and there have been no results so far, but animal models indicate that it works (for details see https://investors.otonomy.com/static-files/cdfa5ab7-2975-46cf-81a5-5e0ef5a16c15).
Hough Ear Institute pill (NHPN-1010) (available in about 4-5 years): Supposedly also regenerates the synapses between hair cells and auditory nerve. Animal models have been promising but the Institute isn't proceeding very fast with the tests at the moment. COVID doesn't help either.
RL-81 (new retigabine, available in around 7 years; thanks Karl30 for the reminder): A potassium channel modulator that is supposed to directly eliminate tinnitus. Retigabine did the same thing but was much less potent and had many bad side effects.
Bimodal stimulation (available in ? years): This has been an ongoing research field. It's essentially about stimulating the brain simultaneously with sounds and electricity (for example through the tongue) to make use of brain plasticity to reduce tinnitus. Only the Lenire system has been out for now and it helps to some degree for some, but for many it doesn't. It seemingly helps more if you don't have any hearing loss but still suffer from tinnitus. You can only access it in Ireland and Germany and costs around 2500 euros. There's also a device being developed by Dr. Susan Shore but nobody knows when she'll finally finish it. This one should work better than Lenire.
Hearing aids: If you have damage in the range up to 8k hertz, hearing aids can aid with tinnitus. If your damage is over 8k hertz, hearing aids dont help because they don't cover that range unfortunately, as the frequencies over 8k hertz are less important for understanding speech.
Plain old waiting: If you have new tinnitus, it might improve in the coming 1-3 years (studies suggest that around 60% of people have complete recovery after a gunshot injury within 12 months, with another 10% within another year-two years. See here for details https://helda.helsinki.fi/bitstream/handle/10138/27440/investig.pdf?sequence=1 page 15, 35 and 36). For some it takes a long time. Having severe tinnitus at beginning doesn't mean you can't get an improvement.
Hyperacusis:
Hearing sensitivity in general tends to get better over many months as long as you protect your hearing from loud/uncomfortable sounds (you really should buy earmuffs/ear plugs or both). If not, we can only hope that FX-322 or OTO-413 also work for hyperacusis. It is not known yet whether they work or not. It is not known whether DBS works or not.
Visual snow:
There is no known treatment at the moment. Both fortunately and unfortunately, visual snow generally stays the same once it has reached a constant level (no more worsening, no improvement). It can't be ruled out that visual snow that appears after tinnitus gets better with tinnitus treatment. I'm also very positive that visual snow can be reduced with deep brain stimulation (it's just another hyperactivity in the brain after all), but it's speculation at the moment.
What can I do now if I want to give these treatments in the next years a shot?
The usual stuff you probably heard elsewhere: Sports, yoga, meditation, etc. Essentially everything that helps with depression and anxiety. If you're looking for inspiration, I always like to post this video:
.
Dude has lived with moderate visual snow and intrusive tinnitus for the past 5 years and seems to be doing well. Theres also this rugby player: https://www.thesun.co.uk/tvandshowbiz/9426165/strictly-ben-cohen-tinnitus-unbearable-eyes-water/ who is essentially deaf because what remains of his hearing is mostly covered up by veeery loud tinnitus. There's many others out there.
So yeah, I guess one can live for some time with these problems until we have medication on the market that improves/fixes tinnitus.
Take care everyone.
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