Suicidal

[Emgee]

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It's sickening and comical at the same time.

 

[Contrast]

 

[bobvann]

Week muscle

 

[serendipity1996]

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Have you heard of the "Lightning Process" which is getting pushed as a treatment for chronic fatigue syndrome?

 

[Contrast]

Most people with chronic pain are desperate for opioids. It's sad and you have to be sensitive or they explode on you.

They don't care much about biomedical research. They are in the opioid prisons.

 

[valeri]

Did somebody say there's a summary of all current research projects?

 

[Contrast]

https://www.sciencedaily.com/releases/2012/09/120911091100.htm

you are the problem.

 

[Contrast]

Did anyone here already purge there material possessions?

 

[xyz]

Did somebody say there's a summary of all current research projects?

I think @Kriszti referred to this post of @Killer:

Current Promising Treatments:

Regeneration Therapies:

Cochlear degradation has a strong correlation with tinnitus, therefore, regenerating these structures should benefit tinnitus patients.

Frequency Therapeutics - FX-322 (Phase 2a): Uses 2 molecules which, when injected in the ear, partially reprogram support cells into creating hair cells, while not depleting support cells. When created, hair and support cells release NT3/BDNF to attract neurons, which make the synapse components to communicate. They also added a tinnitus experimental arm and are doing a podcast with tinnitus talk.

Audion Therapeutics - LY3056480 (Phase 2): Uses a molecule which, when injected in the ear, causes support cells to trans-differentiate into hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. Results are said to come out at the end of April.

Hough Ear Institute - siRNA (Preclinical): Uses siRNA (silencing RNA) which, when injected in the ear, causes support cells trans-differentiate into hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. In animal testing, hair cells regenerated the synapse components to communicate.

Pipeline Therapeutics - PIPE-505 (Going to Phase 1): Uses gamma secretase inhibitor which, when injected in the ear, causes support cells to trans-differentiate in synapses and hair cells. This does deplete support cells, so multiple uses will have diminishing efficiency. Treatment for tinnitus was shown in their patent.

Hough Ear Institute - NHPN-1010 (Going to Phase 2): Uses a antioxidant (HPN-07) and molecule (NAC) which, when swallowed in pill form, regenerates hair cell synapses in chronic hearing loss models. Also has shown efficiency in animal tinnitus models.

Otomony - OTO-413 (Phase 1): Uses a protein (BDNF) which, when injected in the ear, causes regeneration of synapses. Hidden hearing loss is the loss of synapses connected to hair cells, thus, regenerating synapses can treat this, also with possibly helping tinnitus.

Neuromodulation Therapies:

Neuromadulation has shown efficiency in reducing or eliminating tinnitus by reducing hyperactivity in the area of the brain associated with tinnitus.

University of Michigan - Depending on which has the most effect on your tinnitus, they places stimulation around your head, jaw, and neck. This along with sound timing has shown a 12db tinnitus decrease in their testing.

University of Minnesota - Uses targeted timing based on your tinnitus/EEG to stimulate areas of your neck/head/jaw along with customized treatment for sound timing. Would be the most effective and has cured @kelpiemsp of his tinnitus.

Lenire - Stimulate the tongue along with sound timing has had some positive effects on people tinnitus.

Ion Channel Therapies:

Prof. Thanos Tzounopoulos - RL-81 (Preclinical): A drug based off Trobalt (Retigabine), which has shown positive effects on tinnitus, although having severe side effects. RL-81 aims to reduce side effects drastically by being more targeted, while also having a 15x potency in the targeted area, potentially reducing tinnitus.

There are more treatments coming as well but these are the most popular right now, so don't give up hope! All are planned to release within the next 5-10 years or less.

 

[Kriszti]

@valeri

Regenerative medicine companies:

Hair cell regeneration:

Frequency FX-322 (inner and outer hair cells)
Phase 2a

Otonomy OTO-6xx (pre clinical for severe losses)

Novartis CGF-166 (this one was surgically infused and my personal opinion is I think they completely screwed up by making it a cochleostomy instead of a canalostomy, a newer method surgical method that doesn't damage the cochlea) because they probably damaged more hair cells than they repaired. I think if they re-do the trial with the latter, they may have something). Phase 2.

Pipeline PIPE-505 (Outer hair cells only and synapses)
Pre-clinical.

Decibel (? Small molecule regeneration. Pre-clinical).

Synapse drugs:

Otonomy OTO-413
Phase 2

There is also:

Akouos -- they have something pre-clinical that seems like a much better version of what Novartis was trying to do. They seem more focused on genetic hearing loss but apparently, they are using the same method pre-clinically for acquired hair cell loss.

Beyond regeneration, Dr. Thanos is working on an ion channel drug that is a safer and more effective Trobalt (which people on Tinnitus Talk got relief from but also a ton of side effects). I believe people with tinnitus and hyperacusis both found relief with Trobalt. Pre-clinical.

Autifony has some ideas for this too. Also pre-clinical. But I need to find out more info.

 

[Juan]

I´m currently corresponding with the hearing disorder expert here in Norway. Even though he believes in Jastreboff and TRT approach to our problem he is very knowledgeable and he has completely sold me the idea that noxacusis (pain hyperacusis) stems from problems/contractions with the tensor tympani muscle leading to irritation of the trigeminal nerve and ultimately the trigeminal cervical complex.

That's an interesting theory and it could explain why sometimes pressure that seems to be focused or irradiated from deep inside my ears makes my eyes get tired real fast (I feel pain behind my eyes, always on the same side of my face).

The theory about neck issues also makes sense... I try to stretch to relax my neck and shoulders.

 

[Juan]

With all due respect, I don't think this totally portrays the picture correctly. People with tinnitus and hyperacusis are much more prone to setbacks. I'm not saying the sentiment of finding ways to live with the anxiety aren't valid, but there has to be a way to straddle the irrational and rationals fears here. They are not all irrational. It's not like the probability of getting a setback from a fire alarm just resets. The people that say that it does are typically fake tough guys with mild tinnitus and thinking they are so strong for overcoming it.

I agree with you. Hyperacusis changes completely the perspective on life. One cannot live hoping for the best anymore but only trying to be cautious not to worsen.

In my case, even after developing some hearing loss my tinnitus and hyperacusis strongly react to sound, and I still get very bad headaches, pressure, and fluctuating hearing, which apparently is really strange.

 

[Kriszti]

Sorry, venting.

I'm just so tired of getting told to go to therapy in order to cure my tinnitus. I do have depression and anxiety issues, but I don't think that it caused the ringing in my ears, but because I don't have a clear-cut cause, it must be because of my mental health... I used to go to therapy pre-tinnitus, but didn't have a very good experience. Not overly unpleasant, just absolutely ineffective, but expensive.

Tinnitus is really hard on its own, I'm just exhausted of getting blamed for not wanting to get better, because this situation must be so convenient for me. Yep, I'm having the time of my life... I have tried a myriad of stuff, so although I know everybody wants the best for me and I haven't been easy to be around since this shit started, I don't react too well to this "tough love" approach. I'm not willing to take any medication due to fear of ototoxicity, so I probably will go to talking therapy when I have the financial means. I don't think it will help, but I just want people to leave me alone about it. And if it does help, great.

 

[Juan]

This is so true and I think often gets neglected when discussing how to deal with anxiety because you're often told it's irrational when I'd argue it's not wholly so. I mean, me worrying about very specific hypothetical scenarios that are unlikely to happen is irrational but for those of us with tinnitus/hyperacusis there's often a kernel of rationality at the core of these fears - if your auditory system is already damaged then of course stuff like fire alarms are going to pose more of a threat to you than for people with healthy ears.

It's rational because you are anticipating scenarios that can actually damage you, but they cannot damage a person with normal ears. Loud sounds can damage you physically but also make your life miserable in many other ways (losing a job, not being able to work, making it harder to go out or socialise etc).

So for other it seems irrational but it is not.

 

[Juan]

Previous generations knew all doctors could do was stich up wounds and send them home. They learned to live with it. We the generation of entitled leftist are expecting a cure.

Well, previous generations did not put up with the vast amount of noise there is today. We are surrounded by noise at all times. It is just impossible to go have lunch or a coffee without deafening noise around. This is specific of today's world, where music and PA systems are needed even at restaurants (people just go to eat there!), supermarkets etc.

There is noise everywhere, and it was not like that 20 years ago.

 

[Contrast]

The chronic pain community is farther behind in progress from the tinnitus community.

They are begging for opioids and don't advocate much for the few trials on noiceptor blockers.

 

[Contrast]

Advocating for scientific research and disability rights are taboo topics.


Half of the country is ashamed as stigmatized by it. There are people on this forum that view being disabled as extremely shameful.

 

[valeri]

Sorry, venting.

I'm just so tired of getting told to go to therapy in order to cure my tinnitus. I do have depression and anxiety issues, but I don't think that it caused the ringing in my ears, but because I don't have a clear-cut cause, it must be because of my mental health... I used to go to therapy pre-tinnitus, but didn't have a very good experience. Not overly unpleasant, just absolutely ineffective, but expensive.

Tinnitus is really hard on its own, I'm just exhausted of getting blamed for not wanting to get better, because this situation must be so convenient for me. Yep, I'm having the time of my life... I have tried a myriad of stuff, so although I know everybody wants the best for me and I haven't been easy to be around since this shit started, I don't react too well to this "tough love" approach. I'm not willing to take any medication due to fear of ototoxicity, so I probably will go to talking therapy when I have the financial means. I don't think it will help, but I just want people to leave me alone about it. And if it does help, great.

It's not you, it's the ignorant and clueless doctors whose ego is so big they can't admit failure!
Instead they grab onto the next obvious problem, passing the buck to someone else makes it look as if they helped you.

They are an absolute joke!

 

[PeteJ]

The chronic pain community is farther behind in progress from the tinnitus community.

They are begging for opioids and don't advocate much for the few trials on noiceptor blockers.

I think opioids are okay until researchers and experts (?!?) can treat (cure!) the root of the problem.

 

[PeteJ]

I am a big believer in drugs like opiates, CBD oil or whatever helps even if it's only a bit.

Better than the alternatives.

 

[Contrast]

It's not you, it's the ignorant and clueless doctors whose ego is so big they can't admit failure!
Instead they grab onto the next obvious problem, passing the buck to someone else makes it look as if they helped you.

They are an absolute joke!

I don't know why people get mad at doctors, they just do whatever the money/NIH grants tell them to do. They are just following orders.

 

[PeteJ]

To anyone who takes CBD oil or is informed about it:
What ratio should one get?

I read on here that question was answered but I forget. I want to try it and am really investigating it now. I am desperate to try something asap. I know it might not help (*me*) but I think it's worth a try.

I appreciate any help.

 

[Contrast]

I don't think anyone cares if we commit suicide or have low quality of lives. They are only interested in fighting disability claims and preventing economic harm caused by us.

 

[Chinmoku]

To anyone who takes CBD oil or is informed about it:
What ratio should one get?

I read on here that question was answered but I forget. I want to try it and am really investigating it now. I am desperate to try something asap. I know it might not help (*me*) but I think it's worth a try.

I appreciate any help.

Are you referring to the THC/CBD ratio or to the concentration? You should try to avoid THC, that spikes tinnitus in many people. Other than that, CBD is biphasic, meaning that you need to find the correct dosage for you. Too little or too much will not work. I would start with a low concentration and slowly increase the dosage until you feel an effect.
Unfortunately for me even CBD without THC spikes the tinnitus, I hope really you are more lucky. There is a thread on CBD in the forum.

https://www.tinnitustalk.com/threads/already-6-hours-tinnitus-free-with-cbd-oil.11281/

 

[Zugzug]

To anyone who takes CBD oil or is informed about it:
What ratio should one get?

I read on here that question was answered but I forget. I want to try it and am really investigating it now. I am desperate to try something asap. I know it might not help (*me*) but I think it's worth a try.

I appreciate any help.

I take liquid form, usually 15-30 mg.

My advice: Start small. CBD is all about taking the right amount for your body. It tends to help with anxiety and pain. It may do nothing for the tinnitus, or even increase it.

 

[bobvann]

Has not done much for me. Gave me adverse reaction last time I poured drops in my ears. I wrote about it on the topic.

 

[Juan]

I don't think anyone cares if we commit suicide or have low quality of lives. They are only interested in fighting disability claims and preventing economic harm caused by us.

That's why it is so hard to get disability based on hearing issues, and even in case there is a pension awarded the money is a pittance, impossible to live on that. There's just too many people with damaged ears and too much noise around that no government is interested in regulating or controlling.

 

[PeteJ]

Are you referring to the THC/CBD ratio or to the concentration? You should try to avoid THC, that spikes tinnitus in many people. Other than that, CBD is biphasic, meaning that you need to find the correct dosage for you. Too little or too much will not work. I would start with a low concentration and slowly increase the dosage until you feel an effect.
Unfortunately for me even CBD without THC spikes the tinnitus, I hope really you are more lucky. There is a thread on CBD in the forum.

https://www.tinnitustalk.com/threads/already-6-hours-tinnitus-free-with-cbd-oil.11281/

I did find that thread but thanks.

It sounds like "full spectrum" CBD is what most use here? 16 - 18mg/ml For CBD and 0-2mg THC, per dropper. 550-1000mg bottle is the minimum worth trying? The cheapest ones locally or local orders (within my country) is $65 to $100. Expensive stuff. :-(

 

[PeteJ]

I take liquid form, usually 15-30 mg.

My advice: Start small. CBD is all about taking the right amount for your body. It tends to help with anxiety and pain. It may do nothing for the tinnitus, or even increase it.

Thanks for the info. 15-30mg sounds like a lot, no? Do you have any examples of it at online vendors you could share? I'm just curious. Yeah, it sounds like it doesn't help people's tinnitus or if it ever does, it's really rare. Disappointed but I guess not altogether surprising. If it helps/helped with my ear pain, that would be something at least.

 

[PeteJ]

Has not done much for me. Gave me adverse reaction last time I poured drops in my ears. I wrote about it on the topic.

Isn't it supposed to be orally taken? It's supposed to 'reach the brain' and supposedly tinnitus is affecting the brain (and the ears) or vice versa.