Suicidal

He was suffering from additional, post COVID-19 symptoms that your disingenuous post conveniently overlooks.
Of all his COVID-19 symptoms, the only one that was reported explicitly by most press, including the NY Times, was severe tinnitus.

"After a battle with post-Covid-related symptoms, including severe tinnitus, Kent Taylor took his own life this week," the statement said."

Why do you think the family and company statement mention only severe tinnitus explicitly?

"Mr. Taylor fought the condition, but "the suffering that greatly intensified in recent days became unbearable," the statement said. It added that Mr. Taylor had recently committed to funding "a clinical study to help members of the military who also suffer with tinnitus," which causes ringing and other noises in the ear."

It seems clear to me that the tinnitus was the main cause. Look at what he committed to fund. Not a study for COVID-19. A study for tinnitus.

What I find disingenuous is that when we have a tragedy for this horrible condition people attribute it to other factors.

Jastrebroff comment on flag wavers is offensive to all serious people for whom TRT didn't work. There are many. A few died.

TRT effectiveness has also been questioned by clinical research. If it helps someone, more power to them. People for whom it does not work should not be called flag wavers or be pictured as disability money hunting persons.
 
I am sorry to hear that you had an unpleasant experience with mindfulness Chinmoku. It has helped some people to cope better with their tinnitus. Meditating and focusing on the tinnitus noise is something I would not recommend especially if it's very intrusive.

My understanding of meditation is that it's supposed to be done in quiet surroundings and this is not good for a lot of people that have tinnitus. For this reason low level sound enrichment, either using a sound machine or white noise generators is advised. This helps the brain to focus less on the tinnitus and more on sound enrichment. Over time the brain habituates to sound enrichment and slowly pushes the tinnitus further into the background making it less noticeable.

I believe tinnitus counselling can be very helpful. It can remove and demystify a lot of the negative thinking that surrounds tinnitus. Coupled with sound therapy using white noise generators, it can be very effective. This treatment takes time, up to two years so is not a quick fix.

There is some truth in what you say because ENT doctors do not treat tinnitus, as it's not their area of expertise. They treat underlying medical problems that cause tinnitus, either medically or surgically. When no underlying medical condition is found to be causing the tinnitus, the patient should be referred to Audiology. Here, they will see either a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management. These are the correct health professionals to see.

Treatment can involve: counselling, sound therapy using white noise generators, medication or a combination of the three. Sometimes the treatment is called TRT. However, proper TRT requires following a strict protocol and often people practicing this treatment do not adhere to it, but have adapted the treatment to their requirements and therefore, it's not strictly TRT but good results are still possible.

Michael
Michael, I agree it can help some people. I'm glad it helped you and other patients. My NHS Audiologist taught me how to do it with my hearing aids and maskers, wearing the hearing aids increasingly, keeping the white noise volume below the tinnitus etc. I tried it for a few months but my tinnitus kept deteriorating even more quickly. It does not work for me, unfortunately.
 
Of all his COVID-19 symptoms, the only one that was reported explicitly by most press, including the NY Times, was severe tinnitus.

"After a battle with post-Covid-related symptoms, including severe tinnitus, Kent Taylor took his own life this week," the statement said."

Why do you think the family and company statement mention only severe tinnitus explicitly?

"Mr. Taylor fought the condition, but "the suffering that greatly intensified in recent days became unbearable," the statement said. It added that Mr. Taylor had recently committed to funding "a clinical study to help members of the military who also suffer with tinnitus," which causes ringing and other noises in the ear."

It seems clear to me that the tinnitus was the main cause. Look at what he committed to fund. Not a study for COVID-19. A study for tinnitus.

What I find disingenuous is that when we have a tragedy for this horrible condition people attribute it to other factors.

Jastrebroff comment on flag wavers is offensive to all serious people for whom TRT didn't work. There are many. A few died.

TRT effectiveness has also been questioned by clinical research. If it helps someone, more power to them. People for whom it does not work should not be called flag wavers or be pictured as disability money hunting persons.
You know what, Chinmoku? I am tired of disagreement and will readily bow out of this thread and this forum in deference to you guys.

But there's a slightly weird reason for doing so in your case. I just happen to know that 'chinmoku' means 'silence' in Japanese (having lived in the country in the late 90's). And I have read Shusaku Endo's superb novel about the silence of God in the face of suffering, and sat through both Masahiro Shinoda and Scorsese's movie adaptations.

Which is kind of odd, really. But anyway, I genuinely hope that you find either the relief and/or the resilience to get you through this.
 
TRT Witnesses are a cult that will never admit tinnitus alone can be horrid enough to make someone commit suicide.
It's always something else. Depression, post COVID-19, mental illness...

TRT Witnesses are a cult that will never admit tinnitus alone can be horrid enough to make someone commit suicide.
When TRT is presented as exceptionless dogma, I would very much agree.

However, this is not the position I have taken in previous replies to this thread.

My view is somewhat more pragmatic, in the sense that it seems to work for some people. That's all that I am claiming.
 
Michael, I agree it can help some people. I'm glad it helped you and other patients. My NHS Audiologist taught me how to do it with my hearing aids and maskers, wearing the hearing aids increasingly, keeping the white noise volume below the tinnitus etc. I tried it for a few months but my tinnitus kept deteriorating even more quickly. It does not work for me, unfortunately.
Hi @Chinmoku.

Not everyone will have success with TRT or any other tinnitus treatment. I had the treatment twice although the second time wasn't as successful as the first but it still helped. It took 4 years to habituate the second time.

Sorry to know you are still having difficulty.

Take Care.
Michael
 
You know what, Chinmoku? I am tired of disagreement and will readily bow out of this thread and this forum in deference to you guys.

But there's a slightly weird reason for doing so in your case. I just happen to know that 'chinmoku' means 'silence' in Japanese (having lived in the country in the late 90's). And I have read Shusaku Endo's superb novel about the silence of God in the face of suffering, and sat through both Masahiro Shinoda and Scorsese's movie adaptations.

Which is kind of odd, really. But anyway, I genuinely hope that you find either the relief and/or the resilience to get you through this.
I have also lived in Japan in the late 90s, early 2000s. I wanted to bring my kids there but this condition has destroyed my life. I'm in hard survival mode and helping my kids through a trip like that is impossible. This is one of my many destroyed dreams. This condition literally destroyed my life and there is nothing that seems to help. That's why I'm so bitter about it.

I know you benefited from mindfulness. Your posts at the beginning of this thread gave me courage and I tried it with all my heart. I also tried TRT and a million other things. I keep worsening and my hearing loss is also worsening. That's why I am frustrated with the medical establishment as all they do is push mindfulness, TRT and psychotherapy even with progressive hearing loss. So sad. I think COVID-19 and later the vaccine threw a wrench in my chances to improve, or perhaps I suffer from repeated viral attacks of other types, or some autoimmune condition. Tests are generally negative but they are not exhaustive.

Anyway I didn't want to start a polemic with you, I know you are trying to help, so please stay if you'd like to help more people.
 
Chinmoku, I sincerely apologise if any of my earlier posts, especially the one about Kent Taylor, caused you discomfort in any way.

I have the highest regard for you and regret - even temporarily - staking out a position that is different from your own.

As far as I am concerned - and this is going to sound banal and cliched - what unites us, namely, severe tinnitus, is what draws us together rather than divides us.

Reading your previous post is heart-rending because - truth be told - there is no-one who I identify with more closely than yourself in this forum because of that Japanese connection.

Plus, in recent times, I have regressed and am struggling once again with this malady. I was okay for the best part of a decade but am not doing so well, presently.
 
Hey Oscar, you end up trying stem cells?
Hey man. No, I didn't, but it's been an immense relief to know they are available to anyone who wishes to try them, so that at least I have something to hold on to in case my situation deteriorates or my tinnitus becomes too unbearable to live with even if it remains at its current level.

I think I only needed that, knowing that there are still things left to try, the same way it would make a huge difference to have some old fashioned barbs by my bedside, not in order to take them right away at the slightest setback, but to have peace of mind in the sense that my fate would be in my own hands and I wouldn't need to suffer in the process if I decide I had enough of this shite.
 
Chinmoku, I sincerely apologise if any of my earlier posts, especially the one about Kent Taylor, caused you discomfort in any way.

I have the highest regard for you and regret - even temporarily - staking out a position that is different from your own.

As far as I am concerned - and this is going to sound banal and cliched - what unites us, namely, severe tinnitus, is what draws us together rather than divides us.

Reading your previous post is heart-rending because - truth be told - there is no-one who I identify with more closely than yourself in this forum because of that Japanese connection.

Plus, in recent times, I have regressed and am struggling once again with this malady. I was okay for the best part of a decade but am not doing so well, presently.
I am very sorry to hear that, Sleaford Mod. I really hope it goes back to a more liveable state.

There is no need to apologize my friend, this was part of a debate and divergence of opinions is not a problem, even in a tortured state in this forum we can discuss different attitudes to this crazy illness and possible treatments.

I love Japan so much, despite their many contradictions and some issues with their society my period there is one of the experiences that I treasure most in my life. I read some of their literature, even earlier generation writers like Soseki, who lived in London for one year. I like their animation, their food, their technology, architecture, temples, gardens, Zazen, aikido, trains, even the hi-tech toilets, and so many other things, basically my trip was a 360 degrees magical experience for which I will always be grateful. I was also there during the cherry blossoming period, where I travelled through the country, those are some of the most treasured memories I have. I would really like to bring my kids there but this will take a miracle. It is also the country with the highest longevity worldwide, so they must be doing something right. Who knows, maybe a Japanese researcher will crack tinnitus. They did great work on sleep medications with orexin inhibitors, I hope they contribute to our recovery from this madness.

Sorry everyone for this Japan OT, but I think every now and then we need a reminder, especially in this thread, that despite our torture life can still be beautiful.
 
Hey man. No, I didn't, but it's been an immense relief to know they are available to anyone who wishes to try them, so that at least I have something to hold on to in case my situation deteriorates or my tinnitus becomes too unbearable to live with even if it remains at its current level.

I think I only needed that, knowing that there are still things left to try, the same way it would make a huge difference to have some old fashioned barbs by my bedside, not in order to take them right away at the slightest setback, but to have peace of mind in the sense that my fate would be in my own hands and I wouldn't need to suffer in the process if I decide I had enough of this shite.
What's the success rate of stem cell treatment for tinnitus? Never really heard of this.
 
Chinmoku, you are such a star! And it's a real shame that the stunning, evocative post that you have contributed has to appear in a necessarily debilitating forum of this nature.

I have to state categorically that I hate the universe for compelling us to interact in this manner.

Have just taken a phone call from an elderly relative and from start to finish I have had to conceal the state I am in.

That's what tinnitus reduces us to. But the world is definitely a better place with people such as yourself in it.
 
What's the success rate of stem cell treatment for tinnitus? Never really heard of this.
Not worth it. Stem cells aren't developed enough (like progenitor cells) to regenerate the ear. There's also an increase in cancer risk. The benefits are from exosome release, which can be a targeted therapy, although this also is probably not worth it due to specificity challenges. Stem cell therapy for tinnitus makes a lot more sense for treating an underlying disease that is causing the tinnitus, as opposed to, say, a noise injury.
 
Thank you for the kind words, @Sleaford Mod, and I understand, I need to constantly wear a mask in front of my kids but sometimes it slips away and they realize I'm in the deep waters. All this beauty in the world and all this crazy pain. It is indeed a crime that we have to remember all this beauty from a place of desperation like this. I hope we can go back to Japan one day, free of this nightmare.
 
Not worth it. Stem cells aren't developed enough (like progenitor cells) to regenerate the ear. There's also an increase in cancer risk. The benefits are from exosome release, which can be a targeted therapy, although this also is probably not worth it due to specificity challenges. Stem cell therapy for tinnitus makes a lot more sense for treating an underlying disease that is causing the tinnitus, as opposed to, say, a noise injury.
To add to @Zugzug's post above, @danielthor, success stories with stem cells are anecdotal.

There are cases in the press where people with tinnitus due to MS or other general conditions have benefited from stem cells. Tinnitus lowered as a side effect of the treatment of the main condition (there is a report of this happening to a lady suffering with MS in the Daily Fail).

However, systematic evidence of stem cells' effectiveness for hearing loss and tinnitus is non-existent, and one of the world experts, Prof. Heller in Stanford, warned against their use for hearing conditions. I think he exaggerated a little, in that - as I said above - there are cases where they may help, but they won't regrow hair cells by just shooting them randomly in the inner ear. Some very well informed forum members who are quite up to speed on medical research are more positive about it but their opinion is quite nuanced. See also this thread. I think we simply don't know enough to exclude that they might help in some way but it's unlikely and risky, and I would consider them only as a very last resort. Also, the route of administration is uncertain. Stem cells won't reach the inner ear if administered IV, so they usual inject in some trigger points around the ear or intratympanically in some very special cases. Some may even propose intranasal or cerebrospinal administration, but I'd be very careful, especially with the latter.

Some companies are developing stem cells specifically targeted for inner ear regeneration and this shows one cannot just shoot some cells there and hope for the best, otherwise these companies would have no reason to exist. Rinri therapeutics is doing that but it will be a long wait.
 
Not worth it. Stem cells aren't developed enough (like progenitor cells) to regenerate the ear. There's also an increase in cancer risk. The benefits are from exosome release, which can be a targeted therapy, although this also is probably not worth it due to specificity challenges. Stem cell therapy for tinnitus makes a lot more sense for treating an underlying disease that is causing the tinnitus, as opposed to, say, a noise injury.
I've actually been thinking of doing this (exosomes), there is a clinic in Germany that does it. Hearing loss is killing my life. I can't listen to music/watch films.
 
I've been doing slightly better taking care of myself more. But, everything is still so horrible. I used to have a perfect memory and how my memory is shot from not sleeping and taking meds to sleep. I look terrible from exhaustion and depression. I basically gave up on all my dreams because I don't feel like I can mentally handle things anymore.

Why doesn't anyone talk about this fucking condition? Like I can have my whole personality and will to live wiped, yet no one knows tinnitus exists / cares. :( I'm scared of seeing people I knew before this happened and them noticing something completely off with me.
 
I was enrolled in a mindfulness course for tinnitus. I meditated religiously on the noise half an hour a day for three months but the tinnitus kept worsening and in the end I couldn't do it anymore. During the 8 weeks course we went from a group of 12 people to a group of 4, as 8 people left. Some time later an ophthalmologist proposed me a mindfulness course for visual snow. I left his office crying. They throw mindfulness at you whenever they don't know what else to do and this gives specialists an excuse to discharge you without trying other real medical treatments or taking some risks. ENTs love this because it gives them a place to put tinnitus patients. And hey, there are clinical trials showing mindfulness is effective for everything so if you don't respond it's your fault, we tried to help you.

This is not against vipassana meditation in general, it is an important practice in some respects, but western medicine has transformed it in a sort of panacea for everything they cannot treat, giving many medical doctors an excuse for not trying harder to treat the patient medically.
I missed this earlier post of yours. What surprises me about it is the fact that it was recommended that one should make tinnitus the actual object of meditation.

I have serious reservations about that. To me it seems masochistic (or tantric if you happen to be familiar with that strain of Buddhist philosophy).

Tara Brach, for example, doesn't advocate this.



What I think you are rightly drawing attention to is what I would call the 'mindfulness industry', a bandwagon that many have jumped on without necessarily knowing what they are doing.

What would interest me are the views of those who have utterly immersed themselves in the practice, who maybe have a decade or two of experience of daily practice. What might they be suggesting?

This is what one such author had to say about their own illness (this is from a book I read earlier this year). Make of it what you will.

'I am writing this some weeks after receiving an esophageal and stomach cancer diagnosis. The doctors are optimistic, but they won't know the real prognosis until they do surgery a few days from now. Like many twists and turns in life, this news came as quite a surprise to me. In general, I'm doing okay with it, but I am also afraid sometimes, as we humans often are when faced with our own mortality. I don't want to pretend that I that I am some kind of hero who is beyond all fear. I'm a complete Zen coward! I believe that some level of fear is hardwired into the deepest part of our brains, and it awakens when we ponder our own sickness and death.

But that's okay because it's not the end of the story.

Another part of me is beyond all fear. I mean that. Part of me is afraid but part of me is not afraid at all. It's the part of me that is wonderfully beyond 'me', beyond all fear of death – an aspect of my being that is fine with whatever happens. The part of me that knows there is no place to fall to and that does not believe in death in the usual way we think about it. I feel content, even though I am also worried about my upcoming surgery. There are serious risks, and the operation might not work. I want to get the cancer out, but the treatment is painful and without guarantees. I am afraid, and sometimes the fear makes me sweat from head to toe. I realize that I may not be here in a year or two, or even months from now. I may not be here tomorrow. What will become of my family? I miss my kids, my wife, the car. Who will teach my daughter to ride a bike, or show my son how to shave? Sometimes, the loneliness I feel makes me cry at night.

At the same time, I am beyond all fear, and there is not the least resistance to death in my heart. Through Zen practice, I stopped being concerned about death a long time ago. If death comes, let it come. Whatever happens, I'm willing to dive right in. thus, I am content to be here in this hospital room. All is as it should be and I overflow with joy. An amazing aspect of Zen, the essence of the wisdom and compassion at its very center, is that it allows all such to be true at once, each in its own way. Each perspective has its place, and there is not the least bit of conflict among ideas and emotions that at first appear to be contradictory.'

I would like to tell you where this strength comes from – it comes from zazen and Dogen's way of shikantaza. These are my source of courage today…

As Master Dogen describes it, shikantaza is very simple: we sit in total acceptance of what is, dropping judgments and resistance to all of life's happenings during the time of sitting. Equanimity is vital…Thus, I accept even those days of sitting, or life, when my heart is not so peaceful. I honor even those times when I am downright scared. I am at peace and content with not always needing to feel 'peaceful and content' all the time, like some days when sitting zazen in this cancer ward bed…During zazen, we drop all resistance and feeling of lack, letting the act of sitting be enough in itself. Such total allowance is how we ordinary beings can manifest some of the wisdom and peace of a Buddha in our hearts.'​

I take this kind of perspective very seriously, though God knows how we are meant to relate it to something like severe tinnitus and hyperacusis.

In the final analysis I guess I am envious.
 
I sure hope my tinnitus gets better, I can't cope with it. Imagine someone emptying a sack full of coins on to a marble floor, non stop. My head can't cope. I can't listen to music anymore, even at low volume as it sounds wrong and constantly reacts to everything. I HATE NOISE. I am at the 2 month mark, not sure I will be able to cope longer than 6 months of this.
 
I sure hope my tinnitus gets better, I can't cope with it. Imagine someone emptying a sack full of coins on to a marble floor, non stop. My head can't cope. I can't listen to music anymore, even at low volume as it sounds wrong and constantly reacts to everything. I HATE NOISE. I am at the 2 month mark, not sure I will be able to cope longer than 6 months of this.
Tell me about it.
 
I don't even know what to do now. I was doing okay once again. Had a an appointment with an otolaryngologist that I heard was great. He wanted me to get an audiogram first. Fine whatever. I told them no acoustic reflex test and no tympanogram. What do they do? Do another test I've never heard of and said it wouldn't be loud. An acoustic emissions test. It was kind of loud. but now my tinnitus is so much louder today. My left ear feels like it's going to explode with sound. It's harder to cover up. High pitched dog whistle is back and is louder than everything. I can't wear earplugs to protect my ears now bc it's so painfully loud I cannot function with them in. Everything's going haywire. All this for the doctor to tell me to eat some migraine diet. wtf?!?! All the work I put in to be okay is out the window. I'm so frustrated. I told them no tests. no fucking tests!!!
 
What's the success rate of stem cell treatment for tinnitus? Never really heard of this.
I think PRP (Platelet-Rich (blood) Plasma has a better success rate on this forum at least. But you´ll have to get 70-80 of intratympanic injections for it to work. The one guy who did it is no longer on this forum. I think John Adams was his forum name.
It worked for some people. @birdy stabilised at 4mg Clonazepam. She had to updose a few times to get there.
But where is @birdy now? I talked a lot with her, but she does not answer anymore?
There's a Ketamine clinic in Oslo!?! Holy shit, I did not know that! I live in Oslo! I'm calling these people on Monday!
Did you call them? Any luck for relief you think?
 
I missed this earlier post of yours. What surprises me about it is the fact that it was recommended that one should make tinnitus the actual object of meditation.

I have serious reservations about that. To me it seems masochistic (or tantric if you happen to be familiar with that strain of Buddhist philosophy).

Tara Brach, for example, doesn't advocate this.

What I think you are rightly drawing attention to is what I would call the 'mindfulness industry', a bandwagon that many have jumped on without necessarily knowing what they are doing.

What would interest me are the views of those who have utterly immersed themselves in the practice, who maybe have a decade or two of experience of daily practice. What might they be suggesting?

This is what one such author had to say about their own illness (this is from a book I read earlier this year). Make of it what you will.

'I am writing this some weeks after receiving an esophageal and stomach cancer diagnosis. The doctors are optimistic, but they won't know the real prognosis until they do surgery a few days from now. Like many twists and turns in life, this news came as quite a surprise to me. In general, I'm doing okay with it, but I am also afraid sometimes, as we humans often are when faced with our own mortality. I don't want to pretend that I that I am some kind of hero who is beyond all fear. I'm a complete Zen coward! I believe that some level of fear is hardwired into the deepest part of our brains, and it awakens when we ponder our own sickness and death.

But that's okay because it's not the end of the story.

Another part of me is beyond all fear. I mean that. Part of me is afraid but part of me is not afraid at all. It's the part of me that is wonderfully beyond 'me', beyond all fear of death – an aspect of my being that is fine with whatever happens. The part of me that knows there is no place to fall to and that does not believe in death in the usual way we think about it. I feel content, even though I am also worried about my upcoming surgery. There are serious risks, and the operation might not work. I want to get the cancer out, but the treatment is painful and without guarantees. I am afraid, and sometimes the fear makes me sweat from head to toe. I realize that I may not be here in a year or two, or even months from now. I may not be here tomorrow. What will become of my family? I miss my kids, my wife, the car. Who will teach my daughter to ride a bike, or show my son how to shave? Sometimes, the loneliness I feel makes me cry at night.

At the same time, I am beyond all fear, and there is not the least resistance to death in my heart. Through Zen practice, I stopped being concerned about death a long time ago. If death comes, let it come. Whatever happens, I'm willing to dive right in. thus, I am content to be here in this hospital room. All is as it should be and I overflow with joy. An amazing aspect of Zen, the essence of the wisdom and compassion at its very center, is that it allows all such to be true at once, each in its own way. Each perspective has its place, and there is not the least bit of conflict among ideas and emotions that at first appear to be contradictory.'

I would like to tell you where this strength comes from – it comes from zazen and Dogen's way of shikantaza. These are my source of courage today…

As Master Dogen describes it, shikantaza is very simple: we sit in total acceptance of what is, dropping judgments and resistance to all of life's happenings during the time of sitting. Equanimity is vital…Thus, I accept even those days of sitting, or life, when my heart is not so peaceful. I honor even those times when I am downright scared. I am at peace and content with not always needing to feel 'peaceful and content' all the time, like some days when sitting zazen in this cancer ward bed…During zazen, we drop all resistance and feeling of lack, letting the act of sitting be enough in itself. Such total allowance is how we ordinary beings can manifest some of the wisdom and peace of a Buddha in our hearts.'​

I take this kind of perspective very seriously, though God knows how we are meant to relate it to something like severe tinnitus and hyperacusis.

In the final analysis I guess I am envious.
Thank you for this. I'm a little familiar with Tara Brach and I agree with what she says in the video. I used to like Charlotte Joko Beck too and a few other authors.

I should say that I had meditated for years before doing mindfulness for tinnitus but not really on a continued basis, I had several interruptions unfortunately. I used to meditate on the breath mostly, sometimes I would do metta meditation.

The idea in the tinnitus mindfulness sessions was to meditate on the breath initially, but the tinnitus was too intrusive and severe I found it impossible. There was no way to focus on the breath, I could try, but the tinnitus would painfully dominate my experience and there was nothing I could do. My attention would be 10% breath 90% tinnitus and the 90% would be totally unintentional and extremely distressing. Then they suggested to turn this problem on its head and meditate on the tinnitus instead. I tried that too but it didn't help, I would sit with 30 minutes of pure suffering, trying to experience it non-judgementally. The story of the second arrow here didn't help me much because I think 99% of my suffering comes from the first arrow, so the help mindfulness can give me is rather limited.

I like the quote you posted, it is very inspirational. I wish I could find that space myself.
 
I don't even know what to do now. I was doing okay once again. Had a an appointment with an otolaryngologist that I heard was great. He wanted me to get an audiogram first. Fine whatever. I told them no acoustic reflex test and no tympanogram. What do they do? Do another test I've never heard of and said it wouldn't be loud. An acoustic emissions test. It was kind of loud. but now my tinnitus is so much louder today. My left ear feels like it's going to explode with sound. It's harder to cover up. High pitched dog whistle is back and is louder than everything. I can't wear earplugs to protect my ears now bc it's so painfully loud I cannot function with them in. Everything's going haywire. All this for the doctor to tell me to eat some migraine diet. wtf?!?! All the work I put in to be okay is out the window. I'm so frustrated. I told them no tests. no fucking tests!!!
I had a spike after a lot of tests at my audiologist's. The spike subsided after a week. They did do Acoustic Reflex Testing and it was mega loud. But I believe the worst was the extended audiogram. I had one done a month before and it was perfect (worst dip at 16 kHz, it was 20 dB). But now I somehow could not hear the 16 kHz tone in my left ear. And when I did, it started crackling immediately, like a broken record. My left ear was ringing after that.
 
To add to @Zugzug's post above, @danielthor, success stories with stem cells are anecdotal.

There are cases in the press where people with tinnitus due to MS or other general conditions have benefited from stem cells. Tinnitus lowered as a side effect of the treatment of the main condition (there is a report of this happening to a lady suffering with MS in the Daily Fail).

However, systematic evidence of stem cells' effectiveness for hearing loss and tinnitus is non-existent, and one of the world experts, Prof. Heller in Stanford, warned against their use for hearing conditions. I think he exaggerated a little, in that - as I said above - there are cases where they may help, but they won't regrow hair cells by just shooting them randomly in the inner ear. Some very well informed forum members who are quite up to speed on medical research are more positive about it but their opinion is quite nuanced. See also this thread. I think we simply don't know enough to exclude that they might help in some way but it's unlikely and risky, and I would consider them only as a very last resort. Also, the route of administration is uncertain. Stem cells won't reach the inner ear if administered IV, so they usual inject in some trigger points around the ear or intratympanically in some very special cases. Some may even propose intranasal or cerebrospinal administration, but I'd be very careful, especially with the latter.

Some companies are developing stem cells specifically targeted for inner ear regeneration and this shows one cannot just shoot some cells there and hope for the best, otherwise these companies would have no reason to exist. Rinri therapeutics is doing that but it will be a long wait.
OK so the question is, WHY won't the stem cells regrow hair cells if injected into the ear? I don't see a reason why they shouldn't, they are rebuilders, so this indicates some special sort of mechanism or process needed for them to work in the ear, like needing a VIP ticket rather than free entry.
 
I don't even know what to do now. I was doing okay once again. Had a an appointment with an otolaryngologist that I heard was great. He wanted me to get an audiogram first. Fine whatever. I told them no acoustic reflex test and no tympanogram. What do they do? Do another test I've never heard of and said it wouldn't be loud. An acoustic emissions test. It was kind of loud. but now my tinnitus is so much louder today. My left ear feels like it's going to explode with sound. It's harder to cover up. High pitched dog whistle is back and is louder than everything. I can't wear earplugs to protect my ears now bc it's so painfully loud I cannot function with them in. Everything's going haywire. All this for the doctor to tell me to eat some migraine diet. wtf?!?! All the work I put in to be okay is out the window. I'm so frustrated. I told them no tests. no fucking tests!!!
When it comes to tinnitus, most doctors are evil scammers. In fact, worse than scammers, because a scammer will only take your money and not hurt you physically.
 
I don't even know what to do now. I was doing okay once again. Had a an appointment with an otolaryngologist that I heard was great. He wanted me to get an audiogram first. Fine whatever. I told them no acoustic reflex test and no tympanogram. What do they do? Do another test I've never heard of and said it wouldn't be loud. An acoustic emissions test. It was kind of loud. but now my tinnitus is so much louder today. My left ear feels like it's going to explode with sound. It's harder to cover up. High pitched dog whistle is back and is louder than everything. I can't wear earplugs to protect my ears now bc it's so painfully loud I cannot function with them in. Everything's going haywire. All this for the doctor to tell me to eat some migraine diet. wtf?!?! All the work I put in to be okay is out the window. I'm so frustrated. I told them no tests. no fucking tests!!!
Once again you'll get back to where you need to be. Screw the ENTs lol.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now