Managing Anxiety, Reassurance, and Hope for Future Treatments

[serendipity1996]

Hi all,

I initially signed up to Tinnitus Talk 3 years ago in 2016 having experienced my first bout of hyperacusis and TTTS symptoms. I'd been living with very mild non-bothersome tinnitus since I was around 16 (I'm 23 now), however, it escalated to hyperacusis, bringing discomfort and pain. I have always been quite neurotic and highly-strung so I began consulting Dr Google which had disastrous repercussions. Before I knew it, this cascaded into a full-blown nervous breakdown culminating in a visit to the psych ward as I had convinced myself that my life was over and I was doomed to a life of perpetual misery. I was put on antidepressants (Mirtazapine/Remeron) which allowed me to steadily regain a sense of perspective and rationality.

After a couple of months my hyperacusis + TTTS symptoms eased off although they have never completely disappeared which seems to be the case with many of those similarly afflicted on these forums. I am fortunate that I can navigate daily life with few problems. I gave up headphones and use earplugs in cinemas, on plane flights, and loud bars or any other moderately noisy venues. I would never venture into a nightclub again (luckily I've 'been there and done that'). I do experience mild setbacks, however, which can be pretty discouraging and dispiriting. During these setbacks, I experience the typical symptoms of hyperacusis + TTTS: ears feel a lot more fragile, aural fullness, sporadic tingling sensations, hot and cold feelings, and occasionally even facial pain along my cheekbone.

My setbacks tend to last 1-2 weeks and I am currently going through one and finding it difficult to surmount the usual anxiety and obsessive thoughts. It's encouraging to revisit the forum and catch up on all the latest research particularly the recent surge in biotech firms actively working to develop treatments for NIHL. I can't recall there being any discussion about Frequency Therapeutics 3 years ago back in 2016 so it's heartening to see how far research has come. However, it's still difficult to maintain hope when it comes to hyperacusis and noxacusis (pain hyperacusis) etc and seemingly how much research still needs to be done to have any hope of alleviating symptoms. I got my tinnitus initially from headphone use so I am hopeful that therapies being developed by not only frequency but also Otonomy (who are focusing on cochlear synaptopahty or HHH) would resolve these issues but it's hard not to worry or feel discouraged.

How do you guys deal with the anxiety and uncertainty that these conditions lead to? I am very much a layman - are you guys generally optimistic about the future direction of research? Any silver linings?

 

[serendipity1996]

One more question: I would like to do as much as I can to help further research efforts into finding therapies for hyperacusis, tinnitus, and hearing loss. I'm thinking about trying to contribute a monthly donation towards this although I want to be sure that I am donating to a cause that is focusing its efforts on scientific research/therapies as opposed to palliative management e.g. CBT etc. Also, preferably a UK-based organisation? Anyone have any suggestions or recommendations?

 

[mrbrightside614]

One more question: I would like to do as much as I can to help further research efforts into finding therapies for hyperacusis, tinnitus, and hearing loss. I'm thinking about trying to contribute a monthly donation towards this although I want to be sure that I am donating to a cause that is focusing its efforts on scientific research/therapies as opposed to palliative management e.g. CBT etc. Also, preferably a UK-based organisation? Anyone have any suggestions or recommendations?

Try the Hough Ear institute or Dr. Thanos Tzounopoulous here:

https://eyeandear.thankyou4caring.org/DonateNow

 

[Contrast]

Hi all,

I initially signed up to Tinnitus Talk 3 years ago in 2016 having experienced my first bout of hyperacusis and TTTS symptoms. I'd been living with very mild non-bothersome tinnitus since I was around 16 (I'm 23 now), however, it escalated to hyperacusis, bringing discomfort and pain. I have always been quite neurotic and highly-strung so I began consulting Dr Google which had disastrous repercussions. Before I knew it, this cascaded into a full-blown nervous breakdown culminating in a visit to the psych ward as I had convinced myself that my life was over and I was doomed to a life of perpetual misery. I was put on antidepressants (Mirtazapine/Remeron) which allowed me to steadily regain a sense of perspective and rationality.

After a couple of months my hyperacusis + TTTS symptoms eased off although they have never completely disappeared which seems to be the case with many of those similarly afflicted on these forums. I am fortunate that I can navigate daily life with few problems. I gave up headphones and use earplugs in cinemas, on plane flights, and loud bars or any other moderately noisy venues. I would never venture into a nightclub again (luckily I've 'been there and done that'). I do experience mild setbacks, however, which can be pretty discouraging and dispiriting. During these setbacks, I experience the typical symptoms of hyperacusis + TTTS: ears feel a lot more fragile, aural fullness, sporadic tingling sensations, hot and cold feelings, and occasionally even facial pain along my cheekbone.

My setbacks tend to last 1-2 weeks and I am currently going through one and finding it difficult to surmount the usual anxiety and obsessive thoughts. It's encouraging to revisit the forum and catch up on all the latest research particularly the recent surge in biotech firms actively working to develop treatments for NIHL. I can't recall there being any discussion about Frequency Therapeutics 3 years ago back in 2016 so it's heartening to see how far research has come. However, it's still difficult to maintain hope when it comes to hyperacusis and noxacusis (pain hyperacusis) etc and seemingly how much research still needs to be done to have any hope of alleviating symptoms. I got my tinnitus initially from headphone use so I am hopeful that therapies being developed by not only frequency but also Otonomy (who are focusing on cochlear synaptopahty or HHH) would resolve these issues but it's hard not to worry or feel discouraged.

How do you guys deal with the anxiety and uncertainty that these conditions lead to? I am very much a layman - are you guys generally optimistic about the future direction of research? Any silver linings?

https://hyperacusisresearch.org/

This is a great resource for people who have hyperacusis with pain. I used to have it but it went away virtually entirely but I am still cautious and do not expose myself to loud noise.

 

[serendipity1996]

https://hyperacusisresearch.org/

This is a great resource for people who have hyperacusis with pain. I used to have it but it went away virtually entirely but I am still cautious and do not expose myself to loud noise.

Yes, a great site! I actually donated to them just a few days ago - not a lot given I'm currently an unemployed graduate but such a good cause to support and I will continue to do so. Managing hyperacusis feels like constantly navigating a tightrope - I know I'm pretty fortunate to have it only in a mild form with occasional 'flare-ups' but it doesn't go well with my anxiety disorder lol. I've been stuck in a bit of a rut lately and letting uncertainty over the future fuel a lot of my anxiety e.g. I have my cousin's wedding coming up in July and I am already freaking out about the prospect of harming my ears further.

 

[mrbrightside614]

Yes, a great site! I actually donated to them just a few days ago - not a lot given I'm currently an unemployed graduate but such a good cause to support and I will continue to do so. Managing hyperacusis feels like constantly navigating a tightrope - I know I'm pretty fortunate to have it only in a mild form with occasional 'flare-ups' but it doesn't go well with my anxiety disorder lol. I've been stuck in a bit of a rut lately and letting uncertainty over the future fuel a lot of my anxiety e.g. I have my cousin's wedding coming up in July and I am already freaking out about the prospect of harming my ears further.

There is a cautious optimism regarding the biotechs that you've mentioned in terms of curing/treating hyperacusis. I have not done much research into the mechanisms behind hyperacusis, as tinnitus is my main concern. I firmly believe that between Shore's neuromodulation device and Frequency Therapeutic's FX-322, a majority of us could very well be restored to former glory (depending on age, environment, profundity of hearing loss, etc.)

However, solidifying the integrity of the hearing system as a whole I would THINK would have to have some kind of positive consequence in terms of hyperacusis. Just thank god you're not worse off, and manage your symptoms as best you can. Perhaps think about progressive sound therapy.

 

[serendipity1996]

There is a cautious optimism regarding the biotechs that you've mentioned in terms of curing/treating hyperacusis. I have not done much research into the mechanisms behind hyperacusis, as tinnitus is my main concern. I firmly believe that between Shore's neuromodulation device and Frequency Therapeutic's FX-322, a majority of us could very well be restored to former glory (depending on age, environment, profundity of hearing loss, etc.)

However, solidifying the integrity of the hearing system as a whole I would THINK would have to have some kind of positive consequence in terms of hyperacusis. Just thank god you're not worse off, and manage your symptoms as best you can. Perhaps think about progressive sound therapy.

Yes, indeed - it makes sense to me that hearing regeneration would hopefully ameliorate hyperacusis and given that I can confidently link its etiology to noise exposure (in my case and probably the majority of cases). However, I think more research still needs to be done into the sub-types of hyperacusis e.g. loudness hyperacusis vs. pain hyperacusis (noxacusis). I read an interview with Charles Liberman from last year in which he hypothesised that there are probably different mechanisms underlying these two. But still, a tremendous amount of research has been accomplished and things are starting to pick up steam. It's encouraging that we also have companies like Otonomy, Decibel, and Rinri who are also focusing on hidden hearing loss as well as Frequency etc. There was also anecdotal evidence on this forum that the Regain trial helped with hyperacusis and tinnitus.

I share your optimism and really do think things will get pretty exciting in the years to come - biotech is finally starting to acknowledge that hearing restoration is a worthwhile investment and a massive unmet medical need. I think the number of people suffering from hearing problems is only going to rise given how LOUD society has become.

 

[Greg Sacramento]

Recently been studying the research of VistaGen Therapeutics for a rapid-onset neuroactive nasal spray - to include treatment of adjustment disorder due to stressors related to the COVID-19 pandemic. Adjustment disorder is an emotional or behavioral reaction considered excessive or out of proportion to a stressful event or major life change, occurring within three months of the stressor, and/or significantly impairing a person's social, occupational and/or other important areas of functioning.

VistaGen plans to submit its proposed protocol for a Phase 2 study of PH94B for treatment of adjustment disorder to the U.S. Food and Drug Administration (FDA) through the FDA's new Coronavirus Treatment Acceleration Program (CTAP). The proposed Phase 2 Part A study will be conducted in New York City, the epicenter of the COVID-19 pandemic in the U.S., on an open-label basis and involve approximately 30 subjects suffering from adjustment disorder from stressors related to the pandemic. Based on the results of the Phase 2 Part A study, VistaGen plans to advance development to a Phase 2 Part B randomized, double-blind, placebo-controlled study of approximately 150 subjects. The FDA previously designated PH94B for Fast Track development for treatment of social anxiety disorder (SAD), the first such designation by the FDA for a drug candidate for SAD. VistaGen is currently preparing for Phase 3 development of PH94B.

The biopharmaceutical company said PH94B has potential as a first-in-class, rapid-onset anti-anxiety drug, without systemic exposure or safety concerns of current anti-anxiety drugs. They discuss their research, where it focuses on the same brain regions as tinnitus.

Anxiety can cause hypertension and hypertension can mess with one's tinnitus along with vein and artery blood flow - carotids, organs, nerves, muscles and joints.

 

[Jazzer]

Anxiety can cause hypertension and hypertension can mess with one's tinnitus along with vein and artery blood flow - carotids, organs, nerves, muscles and joints.

As a medication that shows promise I sincerely hope this drug can get approval and bear fruit.
Many sufferers are still more anxious about their tinnitus than they are about COVID-19.

 

[Nobody19]

There is a cautious optimism regarding the biotechs that you've mentioned in terms of curing/treating hyperacusis. I have not done much research into the mechanisms behind hyperacusis, as tinnitus is my main concern. I firmly believe that between Shore's neuromodulation device and Frequency Therapeutic's FX-322, a majority of us could very well be restored to former glory (depending on age, environment, profundity of hearing loss, etc.)

However, solidifying the integrity of the hearing system as a whole I would THINK would have to have some kind of positive consequence in terms of hyperacusis. Just thank god you're not worse off, and manage your symptoms as best you can. Perhaps think about progressive sound therapy.

While I share your optimism on these hearing loss treatments, they are not being tested for hyperacusis. And as far as I know, only FX-322 is being tested for tinnitus, but only because they hope treating hearing loss will treat tinnitus as well.

 

[Greg Sacramento]

As a medication that shows promise I sincerely hope this drug can get approval and bear fruit.
Many sufferers are still more anxious about their tinnitus than they are about COVID-19.

https://www.vistagen.com/pipeline
https://www.vistagen.com/news-media/multimedia
https://www.vistagen.com/news-media/media-coverage

I think PH94B will get approved.
Brain studies are outstanding.
Probable that a big neuro drug company will make a takeover offer.

 

[Greg Sacramento]

Watch the first video in news media/multimedia in post above.

Then read this link: https://www.tinnitusformula.com/library/brain-receptors-and-tinnitus/ This is a easier read than the actual Brooklyn and Martha Entenmann study.

They used benzo drugs where Vistagen's PH94B - discussed 4 posts above does not. Both goals were to lower anxiety, stress, depression and fear.

"The Health Science Center at Brooklyn and the Martha Entenmann Tinnitus Research Center, Brooklyn, NY reported 19 patients who had improvement, 84.3% (16 of 19) reported significant improvement. The average patient estimated subjective improvement for all 19 patients was reported to be 36.8%. The duration of tinnitus relief ranged from 4-6 weeks to 3 years or more. Tinnitus relief equal to or greater than one year was reported by 52.6% (10 of 19). Relief of 1-12 months was reported by 47.3% (9 of 19). "

So in conversation with Vistagen, I asked if there was any in the 150 patient PH94B study that had tinnitus? I wondered because their anxiety study is based not only on the same exact GABA data as the Brooklyn study, but also includes chemosenory. Since Vistagen is a publicly traded company, Security and Exchange Commission rules would be violated if they released information other than by a corporate news release. I didn't get an answer, but was told to carefully follow the phase II study. Many studies that focus on a condition, also have tinnitus associations, but most are physical condition studies. There's over 100 Nasdaq public companies doing research on a condition that also associates with tinnitus with probably a total of 5 billion $ in funding.

 

[Bartoli]

Many sufferers are still more anxious about their tinnitus than they are about COVID-19.

Yes! So true! At least we're not bothered by the "small annoyances" in life that completely derail some others' lives.

 

[johnsole65]

Hope is very important, and I am optimistic we will see successful research into tinnitus within the next few years.

Being in the present is also very important.

Would highly suggest looking into Vipassanā Meditation (Mindfulness) as it's easy to practise and has both has profound effects on understanding and Insight into life and also makes things like tinnitus habituation easier.

It's the practice of simply being aware of your conscious experience, and part of that may be tinnitus. You can notice a stream of negative thoughts such as "This is really bad", or "Will this go away" and catch them before you let them have a worse anxiety response than is needed. You stop Identifying with the "I" thoughts and rather be an open consciousness towards them.

Not having Mindfulness or meditative states, you may have preconceptions about them. In the words of neuroscientist and author Sam Harris "People think of meditation as a glorified stress ball, when it's really a Large Hadron Collider"

Find Sam Harris's App "Waking Up" extremely useful, I have a yearly subscription so would be willing to give free months to those here who would like, yourself included just send me a PM.

When the brain starts to leave tinnitus as a potential threat, you can start "habituating"

Would you like any information of this don't hesitate to contact me.

 

[Chinmoku]

https://www.vistagen.com/pipeline
https://www.vistagen.com/news-media/multimedia
https://www.vistagen.com/news-media/media-coverage

I think PH94B will get approved.
Brain studies are outstanding.
Probable that a big neuro drug company will make a takeover offer.

Following this with great interest. An effective anxyolitic acting on Gaba that hopefully does not create dependence. Interesting mechanism of action too. We need this yesterday. I wonder about the effects on tinnitus. Thank you for the heads up, Greg. I hope this is out very soon.