Reasons Why Research Funding Is Difficult

Several posters on several message boards have mentioned that the reason why funding has been limited is because people say that habituation is possible. I agree that habituation is possible for those that don't have very severe tinnitus. I was able to habituate from my first experience with tinnitus at a 6/10. Most don't have severe tinnitus at a 10/10.

Now having additional severe somatic tinnitus, I often can't post. My tinnitus is getting worse because of relationships to other medical conditions.

Not one, but three different tinnitus medical professionals that I have spoken with believe that those saying that one with severe tinnitus can habituate is stopping funding in the tracks. These professionals are referring to research and then trials where each one will cost billions of dollars. Trials where the patients would be in-house hospitalized for a year or more.

Many trials never have PubMed final results because Universities and non profits receive small grants. For many of these researchers a paycheck is a paycheck. I know that this is fact because I worked in healthcare for many years.

These trials if to happen would probably be advanced brain drug treatment on the parts of the brain where signal functions take place. In those same locations of the brain, other senses like touch are involved.

These professionals that I mention also believe that certain associations like audio hearing associations and psychology treatment therapy associations are also to blame. These associations have lobbyist everyplace on the net. They promote their treatments without ever taking a breathe to realize that those with very severe tinnitus need a class one drug approved FDA drug for tinnitus.

Read line three.

https://clinicaltrials.gov/ct2/show/NCT01480193

 

What is 10/10? How can you be sure yours is as bad as it can get? Spoiler: you can't be sure.

 

@Onsdag There's many sites where one can do matching. There's also data feeds that will compare discomfort levels to actual sounds. I've also talked about sound discomfort and provided links for Eric. I gave him a link that has a 100 sub links on this subject. If I ever have a near functional day I will discuss materials in those links.

My T isn't as bad as it can get. If it was, I would be in a medicated semi coma.

As Michael said: If a person had very severe tinnitus they wouldn't be able to turn their computer on. I'm almost at that point. I won't judge the others here with severe tinnitus, but with very severe tinnitus medical specialists say that it's impossible to live a productive life.

 

Hi Greg Sacramento - what is the best site for Tinnitus matching?
Jazzer

 

@Jazzer For tinnitus matching: http://www.hearing.nihr.ac.uk/public/auditory-examples-sounds-of-tinnitus

I'm beyond sound 11.

PLEASE for START have your sound off and slowly use the sound controls.

 

Well we don't need medical specialists to confirm it, but it's important if they acknowledge that.

 

Here's one you can use to find your tinnitus frequency.

 

This is one of the most redpilled things I've seen on the site. Great post.

 

@threefirefour to encourage those with severe tinnitus with coping ideas is humane. I tried hard along with many others to provide those with moderate or less somatic neck/TMD problems some ideas.

For myself with my somatic difficulties I have gone from plan A to about plan T as I have some serious neck problems. It can be hard to know what physical therapy will help with more complicated spine and neck muscles issues. PT videos show how to pull this and touch that, but sometimes more harm can be done for those with severe conditions. It can take years for improvement.

It also hard for those that need a team of specialists to get an organized team effort. Many with severe T & H find it difficult to see a bunch of doctors and to attend weekly PT sessions.

I have talked to several patients in waiting rooms that said that they don't have a major hearing loss, but do have severe tinnitus. So an approved class one FDA approved drug is needed to help turn down the ringing. In order for funds to be placed into this research with government support is to realize that those with very severe tinnitus can not habituate.

 

Considering that Tinnitus is the most complained about ailment of veterans, and there is still no serious government research on it, it's safe to say they just flat don't care. Not surprised.

 

@threefirefour I agree. There's a doctor named Ben Balough who now practices 20-25 minutes from me at a private hospital. I can't see him for examination because my insurance won't cover. This hospital won't accept an upfront cash payment.

This doctor was a head of US Navel operations for those in the Navy who had tinnitus and hearing loss. His studies are well documented online. He did have some success by using multiple treatments of HBOT, injections within the ears and other treatments. These treatments that the Navy gives are expensive and require daily around the clock care. The military personnel involved in these treatments were hospitalized.

I have investigated why the military hasn't developed study trials on a super drug for tinnitus. These particular funds would have to be Congress approved because it falls under US health grants of different natures and class. There's just too other diseases that are fighting for federal funds.

If we continue to keep trying to sell habituation, instead of understanding for those with severe tinnitus, there will never be a dime placed into federal drug research. I just received another response today from a Congressperson saying just this. I'm in the process of a mailing to US federal office holders. I should say that I wrote a form letter and that my wife is doing the rest of the involved work. I'm incapable of the involvement needed.

If a rare virus surfaces, the US government and other governments will grant some money to federal agencies. If there's health concerns from a disaster some funds will be granted to states, but politics are always involved as in the case of poisons in the drinking water in Michigan.

My ears are ringing like a fire alarm, so it's just impossible for me to type anymore today.

 

I fully agree. I hope something comes soon. Take care.

 

@Greg Sacramento
Well said!
Unfortunately I don't see this habituation business changing anytime soon.
We've all witnessed many times on this board alone members with mild tinnitus talking very dismissively about those suffering from severe tinnitus.
So it looks like we are our own worst enemy.

 

You diagnosed pretty much why we're basically "Shoot ourselves in the foot"; the community.

 

If the right people read even an ounce of this site they would then truly understand people who are suffering. Actually I'm surprised that nothing has been in the works for right meds to attack tinnitus.

I think docs don't really know so they brush you off right from the start and pass you around to different docs to get rid of you. So they don't have all the info or research.

To habituate to me is a helpful concept that helps sufferers to move on with life. But there are many severe and not severe who cannot habituate.

Habituation is a great tool, not method to attack tinnitus.

I'm in the US. I would donate if I thought what they were doing was going in the right direction, it has to be government money, this should not have to be a pledge drive. Docs should have already been working on tinnitus.

 

https://grants.nih.gov/funding/index.htm

Place 'tinnitus' into search - right top or center page

Check the dates

 

You need bio company and medical doc to come together to find an effective medication. Regrowth, implant, surgery are difficult. Funds for research would take a lifetime, spinning a lot of wheels to nowhere.

 

It's nice to see in the clinictrials.gov they just started medication trial new for nmda antagonist ketamine saline on 8 nov 17. I think that is going in the right direction. And it's in NYC. Hopefully suffers would be able to get to, I live in NY. Otherwise, there much not else on the board maybe that lidoderm patch. I would like to think to benefit all tinnitius.

 

I think awareness is one of the main channels to get the proper funding, we need something that moves the masses so that investors can see the potential for inputting their money and getting more out of it.

 

I believe with a Trump administration even less government involvement will ensue. Not a good time for science.