Why Is There No Cure for Tinnitus?

Some damn good discussion happening here. I find myself nodding in agreement with most posts here. Kudos to everyone.

Obviously with clinical trial designs, it’s really tough to figure out the efficacy of a treatment because we lack clear biomarkers. Plus, there's this whole mystery about how long the treatment should go on to actually achieve an improvement. And lastly, the good ole placebo effect that messes with how we see the treatment's real impact.

What about the target population for these trials, are they actually pinpointing the appropriate candidates for these trials?

I think researchers need to address these issues as well.

 

This is pretty much it. Sticky this.

I'll add something onto it. Hair cells don't have to die.

Take the wrong drug and bam, you'll get tinnitus for life. Hair cells will be intact. That's why most people on benzos and SSRIs get tinnitus. Most people who get tinnitus on benzos recover eventually though. With SSRIs recovery is a gamble.

It is a brain thing for the most part.

 

Oh the joys of old age and infirmity! Besides my catastrophic tinnitus that I've had going on 8 years, that has completely ruined my life and any hope of happiness, blood tests showed last week that I have stage 3 chronic kidney disease, most likely due to my resistive high blood pressure.

Along with that, I also had a TIA last Thursday that affected my visual cortex; this gave me crisscross vision (horizontal plane) really bad for four days and is now limited to when I wake up in the morning. It clears up after around 20 minutes. It's day seven and hopefully it will eventually go away completely.

Having just watched my FIL die from end stage renal disease (a horrible way to die), I think I'd prefer a massive stroke or coronary infarction to take me out.

One and done.

I hope Dr. Shore's device gives lasting relief for anyone that finally can get one. Having worked in the medical device space for most of my career and knowing how difficult bringing a De Novo device to market (last one took nine years), I think it may be awhile before you can get your hands on one. But you can always hope.

 

It doesn't seem like people who took chemo ever live to see their tinnitus go away either.

Stupid Accutane.

 

Maybe try Lenire? Tinnitus Clinic I talked to today want $500 for assessment and about $4000 for Lenire. I guess it has helped quite a few people dramatically. The only trial they have is in-clinic though. I may try Lenire but they are booked up until February sometime.

 

I think I'm going to save my money for the Shore device.

 

I wonder when the Shore device will get FDA approval? I’ve read someplace that it will be at least 2 years.

 

I am increasingly fighting the internal battle if I can wait till the Shore device shows up. And I thought I'd deal with "old age and infirmity". But tinnitus and hyperacusis leaves no capacity for anything more. Honest. It's exceedingly unlikely I will live to "old age". I doubt I will make it till 50. I am basically trying to figure out when to end it. The desire to end it soon has been increasing. I just don't want to deal with any shit any more. I want peace.

 

I'm surprised at you!

 

I wonder if it also heals any tinnitus they might have gotten in conjunction with the hearing loss?

If we could detect and measure their tinnitus before and after the hearing loss gets healed, we might have the answer!

If tinnitus is only a brain problem (even the kind that got triggered in conjunction with hearing loss) that some seem to think, then maybe not? But in a way all hearing is triggered in the brain, so I sometimes have a hard time seeing the difference.

Anyway, hopefully restoring the lack of auditory input to the brain that triggers the tinnitus can reverse it.

 

"Most" people on benzos and SSRIs get tinnitus? That would imply over 50%, but I've always heard the figure is much lower.

For example, I took Escitalopram recently, which is an SSRI, and tinnitus was listed as a low risk side effect affecting between 0.1% and 1% of people using the medication. I've seen some similar figures for benzos.

 

Lies, damned lies, statistics. Being exposed to "data-driven" decisions in a corp, I realized that anything can be "justified" and "proven". Even if it obviously goes against common sense.

 

I speculate June of 2024, but that's only my own speculation. Someone told me today that it's already been put through FDA approval which I don't think is true, neither do I think it'll be 2 years is true either. Until we have hard evidence, I suppose we're all just guessing, lol.

 

It's being submitted for FDA approval in Q1/2024, so it should be approved sometime in 2024.

 

There isn't enough people that suffer severely from tinnitus to be dumping millions into research to find a cure. A single cure might only help 40% of people; there probably need to be multiple cures for tinnitus to help everybody who is suffering severely.

1% of the society suffers from tinnitus severely and a lot of those people find coping strategies that work for them.

It is only about 0.4% of the society that is suffering severely and is debilitated by tinnitus.

Tinnitus is too hard of a symptom to figure out and that's why there isn't a serious research approach. Everybody has to find something that works for them and hopefully it is good enough to allow them to live a normal life.

Dr. Susan Shore's device will probably be the same as Lenire; it will help some and won't help others, and also possibly make it worse, but hopefully it will be as good as the hype.

 

Quit all sugar and carbs and go Keto. It should reverse your high blood pressure and alleviate your condition.

Also walk 1-2 hours a day if you can.

 

I realised this a while ago. We need 'treatments' rather than a 'treatment' for patients. It also opens up the possibility of a combination being better than a single treatment.

 

Thanks for the advice, but I can't do keto. With CKD, low protein diet is recommended. I have lost 9 pounds eating much smaller meals while limiting dairy. Restive high blood pressure is hard to treat, even with medications.

Walking in my neighborhood already. Tough to do at length due to loud neighborhood activities. But I'm trying.

 

Which avenue or approach do you think will lead to the magic cure, cures or which therapies will alleviate the distress?

• Surgery --- seems to be a no-no unless in absolutely debilitating cases. There is the risk of medical lawsuit if some surgeon was to experiment. Lab rats, guinea pigs etc. have different cochleas to humans.
  
  
• Pharmacology --- seems to be the avenue of choice.
  
  
• Sound therapy --- looks like the Number 1 hit at the moment, especially with the electro-stimulation.
  
  
• Regenerative therapy --- seems to have hit a roadblock and fallen by the wayside. But it could make a comeback.
  
  
• Gene therapy --- still working on it.
  
  
• Brain implants --- well, Elon Musk has got a few things right before.

 

Whatever it is—a brain problem, a nerve problem, a cell problem—I have a feeling that when we figure out how to cure it, the knowledge we gain will be huge for many people, not just those of us cursed with tinnitus. The cure is going to be tremendous, much like the antibiotic revolution that we take for granted today.

 

Sometimes I get desperate. I hadn’t talked to that Tinnitus Clinic in years. I noticed they didn’t have Lenire on their website and was wondering why. I see they have a closer location now if I decide to make an appointment.

 

I had a weird déjà vu moment this summer.

Let me begin at the start. Back in the 90s our tinnitus group was run and organized by an old English gent called Derek who did a fine job. But he began hinting that if someone wanted to take over the roll that they were very welcome. We were all caught up in careers and families and to put it mildly, no one volunteered to take his place. He was the head of the tinnitus association in this country and had taken on a fair workload. He organized the AGM (Annual General Meeting) and decided to hold it not in the capital but in a neighboring city. I decided to attend and did my research. I found that if I was to go by bus & train, to get into the city centre and get a second bus to connect to the railway station for the first train of the day, I would be just on time to miss it by ca. 20 minutes... and I still needed time to purchase a ticket. So I borrowed a bike with a strong lock and chain, got up extra early and pedaled into town in the early hours and out to the railway station. I got there in good time but when I met Derek at the venue, the poor man was in an awful state. The main tinnitus speaker had cancelled at 20 minutes notice and Derek was frantic to get someone, anyone who could give a halfway decent speech on tinnitus. He managed it somehow anyhow but felt very let down by two things:

1) the main speaker who left him out to dry at short notice,
2) of our group, I was the only one who attended, partly due to the awful logistics of the uncoordinated transport system in the country.

Fast forward to 2023, I showed up to the tinnitus conference in Trinity College in Dublin. @Hazel was giving her speech -- she was the last speaker and me -- going for sainthood here -- was the only punter from the Tinnitus Talk forums who showed up. Besides @Hazel of course. One other thing I noticed was that the gaff was brimming with the smell of money. All sorts of therapists and otologists from all over the world. And all we had to represent us was @Hazel (the last speaker on a Friday) when all and sundry were sneaking off for the weekend.

Long story short, we need to make our presence more noticeable. We shouldn't relinquish the field to the egg-heads, academics and feel-good people.

Nuff said.

Oh! Just one more thing.

Have a Merry Christmas and a Happy New Year. You are all wonderful people.

It's an honour and privilege to belong to this group.

 

→ The Current State of Tinnitus Diagnosis and Treatment: a Multidisciplinary Expert Perspective