My Journey to Silence

Hi,

I know what it's like to have debilitating tinnitus, and today, it's 99% gone. It's not the first thought I have when I wake up in the morning. My stomach no longer churns when I have the 'eeeee' sound. Although my anxiety from getting tinnitus may always be with me, I know I have survived. And it does get better despite my consuming thoughts. I know I should have written my success story earlier, so better late than never.

May 2014. I remember my ear making a popping noise in the middle of Panera Bread, and then the 'eeeee'. I assumed it would just go away the next day. It didn't. It just got LOUDER. I woke up and I had extreme pressure in my head, and the room was spinning, accompanying an ever so loud 'eeeeee' sound. I could hear the sound over everything, even the shower. My body went into flight or fight mood, I begged to be committed. That's how bad it got for the year. I just remember the pain and sadness I was in, and my family who just comforted me in any way they could.

I went to several ENTS, who told me to live with it, my mother shouted back at the doctor. I was 23 at the time and I just finished college, starting my new career. I told them how I was at a music festival a week before, I assumed it was an acoustic trauma and starting blaming myself. Oh, I hated myself so much. Why why why did I have to go that EDM festival?! Why did I stand close to the stage?! The blame set in, and I fell into a deep depression. I didn't eat. I cried on the way to work and back, no one could empathize with me. I felt so alone. I stopped going out and isolated myself, and of course, anything to do with music. The thing I loved the most.

Then, one particularly bad day, I went to my GP, and she prescribed me prednisone. I woke up in the middle of the night and heard silence for the first time in 8 months. I cried of bliss. Once the steroids were out of my system, the 'eeeee' came back with a vengance. However, this got me thinking, this could be an inflammation issue.

My jaw has always clicked after a bad wisdom removal, could this be a TMJD problem? You must be your own advocate for your health, unfortunately, if the answer is not in a doctor's textbook, they can't help you. Many doctors dismissed me until one clever ENT touched my jaw, he said, you may have a jaw problem, not an ear problem. I went to a dentist and they confirmed my jaw was misaligned. I religiously wore a splint for 6 months, and low and behold, my jaw stopped clicking and clenching. The 'eeeeee' sound was finally dissipating after 2 years. Yes, 2 years!!! Oh, and my face wasn't so swollen anymore.

I started seeing a chiropractor as well, my back and neck were extremely swollen. I started getting allergy shots, this helped too. In my brain, I was doing everything I could to eliminate the inflammation. I went to a massage therapist to do neuromuscular therapy on my jaw, it worked wonders, that even my ENT asked for his information so he could help his patients with tinnitus.

Then, last year, I can't remember the date, but I woke up in silence. It took 4 years.... 4 years for the inflammation to die down. I live a normal life, I go to bars and movies and drink. I go to concerts with earplugs and I stand in the back (all my friends understand that I need to be far away). I saw Radiohead. My life isn't on hold anymore.

I never ever thought it would get better, and it did.

<3

Kara

 

Thanks ! Its great to read your success story amongst so much negativity and panic...and you saw Radiohead...what a band.
I saw them in the UK on the 'In Rainbows' tour and nearly died when they played Fake Plastic Trees.
Never forgotten that night.
I hope life stays silent for you X

 

Congratulations !
We all wish to get back to silence again.

 

@Kelvin

I know exactly what you mean. This is why I came back to write my success story. It doesn't happen overnight, it took me 4 years. Radiohead is my all-time favorite band, they played a 3 hour set for us. They didn't play Fake Plastic Trees, but they ended with Karma Police. <3

I never will take the silence for granted. I hope you are doing okay!

 

@robHing

Thank you so much! Of course, I get flare ups if I get a cold, but nothing like before. But I don't hear it 99% of my day, I don't even think about it.

 

I've had tinnitus for 1,5 years now. I can hear it over pretty much anything but I continue living my life as I should. I got mine the morning I woke up after a loud festival. Luckily its only in my left ear. However my right jaw also clicks everything I open my mouth and sometimes just gets stuck completely. I'm gonna get that checked out soon, and hopefully it will help my tinnitus a tiny bit when they fix it. I don't have my hopes up at all though since the cause of my tinnitus is pretty clearly noise trauma (was also diagnosed with slight hearing loss in my left ear).

Anyway, thanks for sharing your story!

 

@Roy114

You never know, at least getting treatment for your jaw, should help. I did blame the festival for a long time, maybe it was a mix of acoustic trauma, I'll never know for sure. But I know fore sure, that having a misaligned jaw was making my tinnitus worse. See what happens and let me know. I don't really talk to many people about tinnitus unless they've experienced it themselves. Good luck!

 

@Kara77 I am beyond happy for you! Please enjoy your new lease on life and spread awareness to all you know and meet! Big hugs!

 

Thanks! And it's the same for me. I feel like people that haven't experienced it or are experiencing it themselves just have no idea what we are going through. I will definitely let you know once I get it fixed!

 

Hi @Kara77,

Thanks so much for coming back and sharing your success story! -- Your journey falls in line with the journey I expect to take to get on top of my situation. Though my tinnitus started with an ototoxic drug (really kicked it off), I've come to believe that I had some "pre-existing" conditions in my jaw and neck that made me vulnerable to that drug.

So I plan to do whatever it takes to realign my jaw, and work out various issues in my neck, upper back, and entire body structure. -- As far as the inflammation you eventually locked into, I'm currently applying a DMSO solution to my neck and ears daily, which is a very effective (and inexpensive) way to reduce inflammation. -- Thanks again for coming back and offering (much needed) encouragement to us!​

Hi @Roy114,

To follow up a bit on my above comments, I would encourage you to consider that you may have had some "pre-existing" conditions as well. After all, there were probably hundreds (or more) than went to the same concert, and didn't end up with tinnitus like you did. Sometimes it's doing just the teeniest, tiniest little things that can make ALL the difference in the world. -- All the Best!​

 

@Lane

You’ve got it right, keep at it. It literally took me two years to see a difference in my tinnitus. Don’t give up hope, you’ve got this. Keep me in the loop with your progress!

 

@Kara77

I remember you. I joined the forum the month before you did. 2014 was a very bad year for me too. Although, I had T for many previous years before. That year, it became worse than ever before. I also developed severe H for the first time. I'm also doing much better and am happy to learn that you are also.

Many people leave the forum and never come back to let others know how they are doing. It's really thoughtful of you to come back and share your success story in order to give others hope! May the positive trend continue in your life regarding T and all of your other endeavors.

Best of Luck!....

 

I got a constant headache right after my bite started feeling off after dental work. tmj/neck stuff might be more important than many think. well done!!!

 

@jimH

That is so sweet for you to say that, and I'm happy to hear you are in a better place too. It takes time, that's why I didn't feel confident writing my success today until I felt I was ready. And today, I felt ready to share my story. I didn't want to be one of those people who never came back.

Sometimes, I feel ill thinking about 2014, but I know if I can survive T, I can survive anything. Cheers to you, Jim!

 

@Agrajag364

Dental work definitely was the starter for me, plus horrible allergies and maybe an acoustic trauma. Look at all avenues. I believe my tinnitus was caused by multiple factors, like a glass that eventually overflowed and the T settled in. Good luck!

 

Your tinnitus had something to do with the jaw and neck modulating connections to the auditory brain
https://www.tinnitus.org.uk/tinnitus-and-tmj
http://www.dizziness-and-balance.com/disorders/hearing/tinnitus/cervical tinnitus.html

 

@Michellejean

Thank you so much. At first I didn't want to share my story with people that I meet, but if it can help just one person, I will. I can't tell you how happy that I am to feel normal again. I was a wreck for a long time, the anxiety is still there though. But I am in such a better place. <3

 

Thank you for sharing! This is very encouraging.

Would you be able to hear silence if you were to wear earplugs in a quiet room?

 

@Bill Bauer

I just went into my walk-in closet with my ear plugs, it's ever so slightly hissing. I had zero reaction because it's at such a bare minimum. Although it's not complete silence, it's barely audible for me. And it's dead quiet in my closet.

 

Just curious @Kara77 did your tinnitus ever react to noise?

 

@Michellejean

It did not, my tinnitus flared only when I was sick or had severe tension in my jaw and neck.

 

@Kara77 -- It's interesting to me that you're still dealing with anxiety--I'm assuming from having gone through the tinnitus experience, and/or wondering whether it might return? Which sort of begs the question for me: Do you think you would have habituated (whatever the full meaning of that word is) had you not been able to reclaim almost complete silence? -- Thanks!​

 

Did you experience Hyperacusis or ear fullness?

 

@Lane

In times of extreme stress, my OCD will pop its ugly head. My brain likes to likes to latch onto noises (similar to my old tinnitus) and play it on repeat. Even when I have no tinnitus, my brain just keeps replaying it for days/weeks. It’s wretched, I have an obsessive personality by nature. I’ve been prescribed antidepressants since high school, unfortunately. This obsessiveness is a separate issue from my tinnitus that I’m currently working on. To me, getting tinnitus was a trauma that my brain is still figuring out (even though the tinnitus noise is gone.)

I’m a work in progress.

 

@Apolonia

I didnt experience hypercusis but I did get ear fullness when I get a bad cold but it goes away if I take an antinflammatory.

 

@Kara77 -- And I'd say a very fine one at that--your good heartedness shines through...

P.S. I made A POST where I touched on OCD issues in case you'd be interested in checking it out...

All the Best!​

 

@Lane

Thanks, I try. It’s nice to be back and talk with everyone. I’ll read your post about OCD, my identical twin suffers as well so maybe I can get some insight.

 

Hi @Kara77 thanks for coming back and updating us. I read your post and realized how similar my T is to yours. I also have T after a concert and TMJ as well.

I was thinking of getting a nightguard. Do you think that would work as well as a splint? Im not sure of the difference. Do you only wear the splint at night or all the time?

Thanks

 

@newbieT

Splint worked just fine for me. I wore the splint almost 24/7. I’m not sure if a nightguard would work as well. I wore a NTI splint for reference. My teeth no longer touch or make a clicking sound. Who knew your teeth weren’t supposed to touch?! I was clenching my teeth for a very long time before my T started.

 

Thanks! I will look up the NTI splint. You mentioned it took 4 years for T to dissapear. Was this a very slow fade? Or did you notice noticeable results right after getting a splint?