Three Years With Tinnitus and Counting

[tumbleweed]

Hi. I have had tinnitus since 2011. I do not know how or why I got it, but I did . In the beginning, not only did I have both ears ringing, I also developed hyperacusis. The ENT specialist I saw in my state told me it is not a life threatening "thing" and I should learn to live with it. After several months I finally got an appointment at The House Ear Clinic in LA. The doctor there was awesome. She told me about clinical trials, neuromonics and an over the counter supplement called NAC. Immediately I started on 600 mg of NAC twice a day. In about a month, the severe hyperacusis stopped completely along with the ringing in the right ear. As of today, I continue to have cycling tinnitus in my left ear. I continue to take NAC daily even though I have not had any change since the hyperacusis and the right ear ringing stopped years ago. Since then I have tried so many things and not one has worked.

THINGS THAT HAVE NOT WORKED

Braces(again in case it might have been tmj)
Neuromonics (1 year)
Acupuncture(4x week for 6 months)
Ashwagandha Extract(GNC store 1 month)
Lipoflavonoid Plus (GNC store 2 months)
Ginkgo Biloba (GNC store 2 months)
Dark Cherry juice(GNC store 1 month)
Cider vinegar(GNC store 1 month)

THINGS THAT HAVE WORKED
NAC- alleviated hyperacusis and right ear ringing during the 1st month of starting it BUT nothing since then.

I was also rejected from two clinical trials because I did not live in the state. Their reasoning was if I received
a placebo or if the treatment was not working I would not continue with the trial.
So, here I am today with an ear that still rings 9/10 on a scale and a son in medical school that will hopefully
find a cure for this "thing" called tinnitus that his mother suffers from.

 

[jeffie7]

Welcome to the forum. Do you hear your ringing nonstop all day regardless of background sound? Any luck masking the sounds with any background noise? AC running, fan blowing? How was your hearing test?

Biggest thing that will make a difference for you is getting over the hump where you can write T off as something that is just there and not let it bother you. I know it sounds impossible but it's amazing how much lower the sound gets when you stop looking for it or focusing on it. Not an easy thing to do.

This forum has A LOT of info and a lot of active posters you will find some great advice here and can even ask doctors that understand T questions that most ENTs won't have any idea how to answer.

I was told around 13 years ago it is what it is and there's no cure and to learn to live with it. Oh and I might have a tumor I better get checked just in case... Gotta love it.

Hopefully we can find a cure before your son gets out of college. But if not I'll be sure to visit him when he finds the cure.

 

[Peter61]

Hi Tumbleweed,
I'm just wondering how you got your T. Are you sure you've never been in a loud noise environment (rock concert, dance club, shooting a gun), things like that... I'd say there simply must be a cause for this. My T was caused by an acoustic trauma, it was actually in a clothing store (of all places), named Abercrombie in London, that my daughter had asked me to visit with her. In there was very loud music. I should have left immediately, but decided to endure the noise for a little while, so my daughter could pick out and try some items. I had to pay a very high price for that stupid decision, as my ears have been ringing like crazy ever since (August 2012).

 

[Ricky81]

Peter61, I don't think a simple stop to a clothing store for a little while can cause long lasting T. Sure it could cause temporary T for 1 or 2 days, but not months.
Your T might be related to something else, anything from ear wax, TMJ, brain fluid, inner ear hair cell, ototoxic medications etc or previous noise related issues.

 

[tumbleweed]

Thanks jeffe7 for the welcome. I can't believe all the information on this site. It's awesome!! To answer your question Peter 61 as to how I got tinnitus remains unknown. Not one particular item stands out in my life. One morning I woke up and it was in both ears. With it came severe hyperacusis and head noise. It was terrible. It still is terrible. What remains after all my doctor visits, supplements, tests and neuromonics is a left ear that cycles at an 8/9 with tinnitus. I think I have exhausted this west coast for treatments. Time to look at the northeast and overseas for some relief.

 

[jeffie7]

What items around the house mask the sounds? Is the fridge loud enough? A/C running loud enough? Shower loud enough?

 

[tumbleweed]

jeffie 7 unfortunately none of those household items will mask it. The only thing that works is my hairdryer. Even the vacuum is not strong enough. What is really odd is some days it is completely silent. Not even a whimper. Total silence! It is like I never had tinnitus.

 

[jeffie7]

Wow that is a pretty high level of sound.

Odd that some days it's not there. It's as if you woke up and your brain forgot to start the ringing process.

I'm very hopefully we will have news of a working cure before too long. Even if it takes years to get into our hands. The news alone of it coming would lift a lot of stress off our shoulders and naturally would help reduce our T.

Speaking of stress. Have you tried meditating, two chi, or any other relaxing techniques?

 

[Peter61]

Tumbleweed, personally I'd say that could be a very positive sign, these T-free days. Not only can you enjoy some heavenly silence again and experience what it's like to be released from that annoying ongoing buzz in your ears, but this could also mean that your brain is working very hard to get back to normal again and that the amount of T-free days will slowly but steadily increase, until the T will entirely disappear eventually. The brain can be very flexible and self healing, who knows things might take a positive turn !

 

[Peter61]

Hi Ricky81, you're right, my T could also be related to something else. However, that clothing store visit was definitely the trigger that got it started.

 

[Kelli]

Keep my name in my mind when your son finds a cure!!