Hello Everybody, Introduction & Personal Project

Hi Everybody,

My name is Luka, I'm 27 and I'm a tinnitus sufferer (like most of you) since august 2014. I'd like to kind of make a bit of introductory to my tinnitus story, how I'm coping with it, and what I'm up to

Reason for my tinnitus:

is acute acoustic trauma. I was on concert and a friend shouted directly in my right ear which resolved in sudden and total hearing loss. I went to a doctor right away, Doctor told me it will pass and send me home. He believed that human voice cannot do that kind of damage. Clearly It can.. (I'll attached an audio gram)

I've tried: After 6 days of accident I finally managed to get to ENT. And received steroids, I also tried hyperbaric chambers and majority of vitamins that I found that can help. Till now I've regained about 40% of my hearing. Mostly in a first few weeks. I hear perfectly to 700 hz, and then there is sudden hearing loss to 50-60 db that lasts to 5 khz and than again my hearing is normal. I still do eat vitamin B, magnesium, zinc food additives.

Hyperacusis & balance:
Several weeks after the accident I've suffered for hyperacusis. Normal noice was really annoyance and it physically hurt me. I've' also had some balance problems. I've had luck and I quickly figured out that in my case this is really brain disorder, and I've forced myself to slowly endure normal lvl sounds. It hurt, but it helped. I believe that vitamin B and E also helped. I'm now longer having problems with hyperacusis or balance. I do avoid laud noises and have have ear plugs with me, but tend to not use them regularly.

Tinnitus:

No brainer. Hearing loss(Injured hair cells) is the main villain to my Tinnitus. It's fairly loud, I can hear it mostly through anything.(showering,driving etc..) And obviously it can be really annoying. I believe that it kind of escalates with number of damaged hair cells. So in my case, it's clearly high.

Things I've learned ( on my case at least + What I've learned from this forum ) :

- The level of suffering goes hand to hand with what type of personality are you:
If you are worrier or panicker or self pity type of personality then you'll endured a whole new pallet of torture. But if you are easy going and occupied all the time, it's definitely manageable.
- Browsing through this forum can be quite depressing and it puts you into state of anxiety and despair.
There are tons of topics that starts with "life is living hell" , "and I cannot go any longer". I believe that this type of conversations puts the writer-er and the reader into state of depression. That leads to long circle of self pity. I couldn't eat for several days after I first stumbled on this forum
- At the moment there isn't any magic pill to make things better but eventually they definitely will be
I'm a total believer in this. I'm involved in computer sector and I'm amazed on how fast are things progressing. Also a lot of money is being purred into this type of researches ( steam cell regeneration ), which will definitely become more affordable and could help a lot of people. Also health sector & artificial intelligence is hot trend for fortune 500 companies(Google etc..). They are putting a lot of money into this. I believe that especially general purpose algorithms(deep learning) could speed up the whole process at figuring how to treat tinnitus and get useful information from enormous amount of data.
- Although there isn't magic pills for now, you can still do miracles regarding your Tinnitus now. It's a mind games...

How do I cope with it ?

I'm not cured or anything, but I do see that I'm coping far better than a lot of people on this forum. I'm pretty certain that my tinnitus lvl is not really in a low decibels since I can hear it in the shower, or driving, or in restaurant) It's 1000-4000 hz static hiss. After 4 months I'm happy, productive, and my tinnitus and hearing loss, reduced my quality of light just slightly.

- I tend to talk to tinnitus:
Yeah, sounds insane. ) But It works for me. I believe that member I who love music, have similar technique.

I've named my constant hissing in my right ear Tinnitus.
Whenever I'm aware of hissing, I tend to threat it as a friend.. I say to myself:
"Hello my dear friend Tinnitus, you've come again to remember me about real life lessons, You've come to remind me that life isn't fair. it's brutal, harsh nature. Destiny dealt me a poker hand that I'll play the best as I can. I'll die eventually and at the end nothing will matter, but until than I'll have a blast.

- I tend to use tinnitus to my advantage.
Tinnitus and hearing loss accident reduced my fear of failure on mostly everything. I just say, fuck why not, whatever the outcome, It cannot be worst than going to 1 concert and lose a ear and get a high tinnitus dua to some random shout. This is especially powerful in business. Because you lose fear for confrontations, presentations, tough decisions. Even if I had to go to jail or something for couple of years, it wouldn't be as bad as living constantly with tinnitus. This kind of thinking is frees me up.

- Tinnitus makes small problems obsolete
Just thinking and listening to tinnitus makes my other problems really small.

- Tinnitus learned me that life is not fair. And that I should not take that personally.
First month of the accident, I've constantly thought about why did that happened to me. I've always protected my ears and avoided loud noises. And I know a lot of people that threat their ears as shit for whole life and still they hear perfectly. Seems kind of unfair, but this is the first thing you have to get out of your head. You have to realize that Life isn't fair. Life is harsh, cruel nature, with a lot of randomness inside. Someone gets a cancer, someone gets a tinnitus, someone gets hit by a car, or someone is born rich, famous and healthy and lives on caviar . That just the things are ) and the sooner you accept that the better. There are things that you cannot change, and there are things that you can. When I accepted that as part of nature and life, I felt a lot better. And this also let me focus on things I can change. ( Earn money, tracking for new cures, live full and happy ). Taking tinnitus to personal tends to put you into spiral of depression and self pity and is similar to gravitation, the bigger the object the heavier the pull.

- Tinnitus forces me into productivity
I tend to forget about tinnitus when I'm in the middle of some interesting projects. Programming for example. Tinnitus kind of like forced me to be more productive than before since I have a choice. Rest and listen to tinnitus or work and forget about tinnitus. For me, this is easy choice.

Project:

I have a software development company, and I'm thinking about putting some developers on the topic that is dear to me. So Tinnitus here I go..

I was thinking about Android\Iphone application that would be your personal Tinnitus friend. At the moment I'm thinking about the app that would help new members to start with tinnitus journey.

- Application would be very positive ( no depressing stuff) and would allow you to kind of like interact with your tinnitus and kind of like guided you to transformation the tinnitus from enemy to a friend. For example whenever you're aware of tinnitus you could talk to it through the app. It would basically become your personal tinnitus tamagochi. )
- Application could measure your tinnitus ( you could recreate it at your will ), compare it to other members
- Generating white noise based on your tinnitus. So generating a noise that would totally drowned it.
- Rough determining of tinnitus cause. For example the ADG I've pasted of myself it's kind of like incorrect since it tracks only a couple of points. (250, 500, 1,1.5,2,3,4) In my case this hearing test is more reliable:

Hearing Test HD

I actually have perfect hearing from 700+ but then it's really huge spike. ADG for example showed the wrong hearing loss starting with 500. I can compare sounds on my healthy ear with my damaged ear. The test also goes to 20k frequency. I believe a lot of members have Tinnitus due to a damaged hear cells although it appears that they have "perfect hearing"
- Decision tools, motivation tool. To use the tinnitus to empower yourself. To be more productive to fear less.
- Guidelines on how to take care yourself, to not make it worse. (It's actually really simple - avoid noise )

The app\web page would have possible treatments section:

In perfect scenario we've had a database of every tinnitus member: with following information:
- start of tinnitus
- cause of tinnitus
- db noise of tinnitus
- frequency of tinnitus
- demo sample of tinnitus
- state ( happy , sad, habbituated)
- duration
- what self treatment did member tried
etc..

For example I could browse trough members and see what they tried and what helped them. I could select specific treatment for example "steam cell regeneration" and I would get result on what members tried it, how did it helped them, contact information for clinic, estimated price etc.. Charts on how many people tried it and how well it performed. It would actually be possible to get all sorts of smart research. On what works for people and for what conditions. If we would have a massive number of users, who knows what sort of useful information could be deduced. We could actually crowdfound a lot of researches.

I liked how member attheedgeofscience had written in his signature:
- Steam cells x 2 => 50% tinnitus improvement
- Laser x 1 => 0 % tinnitus improvements.

In app\page It would be all clear in a non cluttered environment, user could find all the information, statistic etc..

This is a just draft of app from my head. This kind of app would definitely helped me when I've had the accident. And I believe a lot of other new members could have a lot less of stress by trying to retrain tinnitus into your friend this way.
Also it would be really interesting to see new treatments and what effects they have a on people. We could also implement crowd funding in which the whole community gathers money to send someone to try new radical treatments.

I would really like to see opinions of you guys ? What would you expect of an app or web page that is totally dedicated to tinnitus ? How many money would you be willing to contribute or spend on app that would really delivered the results ? Overall what is the average member age, you guys use smartphones ? etc..


Also, I'm curious, since a lot of people, including celebrities, are struggling with tinnitus, and this is kind of defacto goto forum if you have a tinnitus. And celebrities tend to also have access to internet. Do we have some celebrities as a tinnitustalk forum members ?

Best of luck with health,

Luka

 

Hi Luka !
Definitely a good attitude thanks for sharing your experience and ideas !
As for the app I think it is a good idea and there are actually already some existing ones for instance one called 'tinnitus help' (by IND-Ingenieurbuero f. Nachrichten- u. Datentechnik) that I found quite well made and useful. Basically it allows you to create a tailored masking sound to help habituation...
For me as musician and music fan I thought that creating an album for tinnitus charity with some well-known musicians (if possible affected by tinnitus themselves) would be a great idea and I know that there has been a project like that launched by a DJ member of the British Tinnitus Association in 2013 but I don't know where it is now does anyone have a clue ?
The best would be if I could add one of my songs to it !!

"Make the best use of what is in your power, and take the rest as it happens. Some things are up to us and some things are not up to us. Our opinions are up to us, and our impulses, desires, aversions-in short, whatever is our own doing. Our bodies are not up to us, nor are our possessions, our reputations, or our public offices, or, that is, whatever is not our own doing." (Epictetus)

Now I am out to play tennis and get this body exhausted !
Wish you all the best possible day !
Philippe

 

Hi there, Luka. Welcome.
Great attitude you have got there. I liked that "i couldnt eat..." thing.

But still a human voice shouting made such an enormous hearing loss? That´s interesting.
Could the decibels up to say 80-90 cause that much damage? Gotta do some reading about that one.
what were the balance problems like?

 

I had a transient sudden hearing loss after a phone conversation (no joke) ! Now it is probably a multifactorial thing and there are many things than can make a loud sound too loud for one person and not for the other including individual fragility, stress, fatigue, ototoxic drugs, previous noise trauma, etc.
The hearing sense is very complex and sensitive...
Cheers,
Philippe

 

Hi MichaelM,

drox pretty much summarized it up. I did have some ear infections last year, which probably made my hearing more vulnerable. I do believe that the human shouts can be capable of toping 100 db, especially if its in loud environment and directly to the ear.

 

Like you post a lot. A good attitude and keeping yourself busy is a good start but it is just so impossible in the beginning. Also think a good database would be grate. Not only to help you what to consider but more what not to consider.There is so many reason for T and a lot of them just need so different approaches. There must be a lot of good data to be gathered here. In the early days of my T i was so eager to try new things. Did not get anything of that except a lot of more stress. That was last thing that I need at that time and just added a lot of time to my habitation process. I was so stressed so that a lost my normal critical thinking. Good data would probably get me to think twice.

 

Love it!

 

Great idea. Especially woth the funding part. Cause i was thinking about donating money for researches but i dont know what organisation can be trusted.

 

About half the ideas I think could be really helpful (for example, that of being able to look up a treatment and see how it worked for everyone in the database).

It sounds similar to the proposal shown here (though yours obviously has a wider scope, they do still share some important functions): https://www.tinnitustalk.com/threads/data-gathering-project.7127

I think if the small group of members who have a similar idea on this worked on one project we'd have a better chance of completing it. Then again, what do I know, I've always worked independently. : P (e.g. I don't know whether I'd get stressed by non-preferred coding styles and the like... I think I'd be fine with it, but haven't ever had to test myself before)

As for your age and smartphone questions, I'm 18, and I don't use smartphones. (I'm living with my parents, and don't know anybody. : P)