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To those with tinnitus, hyperacusis and visual snow

J

Johny89

Member
Joined
May 13, 2020
Messages
26
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.
 
Last edited:
K

Karl30

Member
Joined
May 19, 2018
Messages
58
There’s also that new version of the drug Retigabine
 
F

Fedrea

Specialist
Joined
May 14, 2020
Messages
317
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.

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 know 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 have bad tinnitus. I have a no. of reasons to ctb, and the tinnitus is one of them, but worse than that is a bad decision the tinnitus pushed me into cos I could not cope with it. It is a bastard disease. There's a big difference between quiet and loud t. Also I spent a long time beating myself up for finding loud t hard to cope with, when others habituate. But there may be inherent differences in how we are able to cope with noise. I used to have constant chronic pain and it was actually much easier to deal with.
 
Busoccupant

Busoccupant

Member
Joined
Aug 18, 2020
Messages
31
Thank you so much for your research. It's one of the most completed ones I've seen. I have tinnitus and hyperacusis since october 2019.
In my opinion these tinnitus solutions remind me of hairloss treatments. People are always talking about near future solutions that will end with balding but in the end there's nothing.
 
T

Taraxias

Specialist
Joined
Feb 22, 2020
Messages
303
Severe Hyperacousis doesnt leave me any life to leave.everything i do makes me worse .i stay in my house and still i get worse by noidy neigbours ,war aircrafts passing, police sirens ,.i go to doctors i get worse by the tests and they tell me nothing finally,half doctors tells me you are fine it is all in my head from my anxiety the other half tells me some scientific cause for this which you cant really find out and just give benzos and neurontin which are all ototoxic and highly addictive.i cant do an mri because of the loud noise ,l did one in a silent mri which made me worse and it was at the start of the problem. Silent mris are not silent dont be foolled as i did .it is reduced decibels only in two sequences.all the other are the same decibells as all the mris. The inside ear mri is the loudest and then comes the head brain mri. .i need some help. I keep becoming worse and worse at my sound sensitivity. I cant tollerate nothing at all .everything setbacks me and makes my dound tolerance worse
 
J

Johny89

Member
Joined
May 13, 2020
Messages
26
Severe Hyperacousis doesnt leave me any life to leave.everything i do makes me worse .i stay in my house and still i get worse by noidy neigbours ,war aircrafts passing, police sirens ,.i go to doctors i get worse by the tests and they tell me nothing finally,half doctors tells me you are fine it is all in my head from my anxiety the other half tells me some scientific cause for this which you cant really find out and just give benzos and neurontin which are all ototoxic and highly addictive.i cant do an mri because of the loud noise ,l did one in a silent mri which made me worse and it was at the start of the problem. Silent mris are not silent dont be foolled as i did .it is reduced decibels only in two sequences.all the other are the same decibells as all the mris. The inside ear mri is the loudest and then comes the head brain mri. .i need some help. I keep becoming worse and worse at my sound sensitivity. I cant tollerate nothing at all .everything setbacks me and makes my dound tolerance worse
You have my sympathy. For hyperacusis I know only of two currently available treatments. First is the Silverstein surgery (round and oval window reinforcement). Its available in US and UK,maybe in other countries. Theres a facebook group for this surgery. This surgery reduces the hypersensitivity, making it more manageable.
The second treatment is experimental and it might be difficult finding a doctor who would help you. The treatment is the application of a nerve block, lidocaine (an anesthetic) which is supposed to block the pain (it fixes only the symptom, not the cause). If lidocaine doesnt work, try going for botox.

Unfortunately I am not aware of other options. I hope you can get some relief.
 
M

MariV

Master
Joined
Sep 13, 2020
Messages
493
i also have tinnitus and its also one of my main reasons for ctb. its hellish.
 
pine3s

pine3s

Member
Joined
Jan 27, 2020
Messages
10
I have visual snow, tinnitus and hate loud noises (hearing neighbours gives me severe anxiety and causes tremendous stress). At least I've found ways to cope with the visual snow and tinnitus.

I don't notice the visual snow that much anymore because I stopped paying attention. The natural brain filtering works better the less I think about it. I had phases years ago when the visual snow was so bad that it became increasingly hard to look at screens. So to those of you who suffer from visual snow: I know this doesn't sound helpful, but try not to focus on it. The more you focus on it, the worse it gets. It will get better if you manage to stop staring at surfaces all the time to confirm to yourself non-stop that you have visual snow.

The tinnitus can be alleviated by listening to various types of static sounds, like white noise, brown noise, flowing water, rain, hair dryers, fans, crickets. Find something that works best for you. ASMR videos also help many people. Video without talking and with natural sounds, like tapping or brushing on various surfaces are useful. It doesn't cure the tinnitus, but it has greatly helped me to fall asleep listening to the mentioned sounds with headphones.

I have not yet found a solution for the anxiety and stress caused by sounds, and as the OP has correctly pointed out, this is one of the many reasons I'm here.
 
R

Raven Moon

Illuminated
Joined
Feb 14, 2019
Messages
1,379
The sad thing with my tinnitus I was told expensive treatments was all that could help. It sucks so much knowing there is help but I can't afford it and that goes for many physical and mental issues I have.
 
whenlavaflows

whenlavaflows

Member
Joined
Sep 21, 2020
Messages
10
I used to have mild tinnitus but drug withdrawals and CNS damage have made it ridiculously worse. I'm also really sensitive to sounds now and the smallest, lightest noises set me off. Sometimes I just want to shove cotton into my ears
 
Lupgevif

Lupgevif

Arcanist
Joined
Jul 23, 2020
Messages
505
This is a great thread, but maybe it should be in recovery?
 
Desdemona

Desdemona

Member
Joined
Oct 14, 2020
Messages
19
I have all of these issues too :(
 
D

Desky

Member
Joined
May 15, 2020
Messages
31
My tinnitus and stomach issues improves on a plant based diet. Three months into the Vegan diet and much of my bodies inflammation response has been less and less. I attribute my tinnitus to inflammation and puffyness in the ear. Fixing the root issue has had a carry over effect of less noticeable ringing and lower stress.
 
BridgeJumper1994

BridgeJumper1994

The Arsonist
Joined
Apr 7, 2019
Messages
897
My friend used the electrostimulation device to treat her tinnitus - she needed to dig into her education fund because it costed 17k, and I kid you not, she needed to take mental health assessments to prove that the reason she cant cope with her tinnitus is not mental illness (and lied through her teeth and said no).

I tried ear plugs, noise cancelling headphones, maskers, pink noise for my tinnitus and hyperacusis, nothing works. I only got barely better - to the point where I can go outside and not scream and shiver when I hear a car passing. But no music, and I loved music. No singing. No restaurants, no crowded places, no quiet at night, need to fix my teeth but scared of the dentist, often I run away and sit under the bridge for hours cause I cant take sounds like fridge and washing machine beeping, tv, closing doors. Nothing helps.
As the damage in my ears got worse, I started getting most insane vertigo spells ever, to the point I cant find the door to my room, everything is whirling, Im crawling on my knees cause I cant keep my balance, cant move my head without making it worse, everynight I keep a plastic bag under my bed and throw up into it....It always happends when I hear a loud sound. I needed to tolerate a boat with a party on it passing by near me on a walk and it made me spin so bad I could barely go home.
Sometimes it feels like one of my ears kinda mutes. The pain is so bad it feels like I have two tunnels boring into the sides of my skull, clogged with earwax and leaking some watery substance.
Ive been to doctors and they blew me off. First regular doctor who said Im fine because theres no inflammation. Then ear doctor who told me the pain is a mental problem and I need to see a shrink, and the vertigo is from my nervous system and he cant help me. Then finally I called ER and they told me Im dizzy cause Im on drugs and now theyre trying to make me pay a fine for uselessly calling them, taunting me, so I signed out AMA before they did anything else than run an antiemetic drip on me.
I dont even bother telling them I think I have hyperacusis - everytime I suggest I might know what is going on with me they treat me like Im a know it all whos smarter than them. But seriously?? They studied anatomy of the ear for years, its them who should know these rare conditions exist! Do they somehow think that the only things that could go wrong with your ear is infections or going deaf? Are doctors dumber than me, a person with no medical degree?
I got MD through doctor Google, I swear. I now know all the obscure conditions that can cause hyperacusis and vertigo. Superior canal dehiscence syndrom. BPPV. Menieres disease. I keep reading about canal dehiscence and thinking I must have wore down a hole in my inner ear with sound, because it all started happening to me after a noise injury from blasting heavy metal in my ears few days long on top volume.

I just want to be put down or something!



I WANT TO SHOVE A SHARPENED PENCIL THROUGH MY EARS.
 
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