Tinnitus / Hyperacusis for 3 Months — What Should I Do Next? Specialist to See? Tests to Have?

[zazzeus26]

Hello from Reno Nevada. I am posting here hoping for some help with a game plan going forward to try and defeat this horrible life changing tinnitus/hyperacusis.

I get quite confused as to which tests/procedures I should have next, as the information on this forum is overwhelming. I have had my "tinnitus/hyperacusis" now for 3 months and asking for some guidance as to what my next steps should be to try and defeat or tame this life changing condition. So far I have had an MRI and hearing test performed. MRI came back clear and ENT said I had significant hearing loss in my left ear. I have severe insomnia and vertigo/dizziness that is also added to my daily fun.

I have a sleep study scheduled for February (trying to get in earlier/on cancellation list). Would welcome forum members comments about what I can expect with a sleep study and what questions to ask the doctors/technicians performing the study.

My "tinnitus" has a high frequency hissing sound and will pulsate at times when standing up quickly. I can manipulate my "tinnitus" intensity by pushing on the left side of my face or when turning my head to the left. Somatic?

What other tests should I schedule? CT scan (what type)? What specialist should I see? What am I missing?

Thank You & Peace

 

[MajaC]

Hi! First, welcome here!
For the vertigo, dizziness, did your ENT talked about ménière deseace? (sorry for my english, it's late, I also have insomnia, I'm sleepy tho and yeah... I'm a french canadian ahah).

Maybe you could try talking to your ENT about some hearing aids? Sometimes, they help reducing tinnitus. With your hearing loss, maybe he would want to let you try?

Sorry I'm not good at welcoming

 

[zazzeus26]

Majc,
I will talk with my ENT about meneire disease and hearing aids. From what what I have read, the disease is rare and my vertigo/dizziness is not causing me to vomit. The dizziness might be from the hyperacusis. I was not impressed with my ENT.

Great to converse with a French Canadian. I lived near the Quebec border (Mansonville) in Vermont. Favorite place to ski was Jay Peak.

Any suggestions on the type of CT Scan? Recommendations for dizziness/vertigo meds?

Peace

 

[The Frenchie]

Hello. I am a french canadian too!
Not used to the somatic thing and tinnitus.

I can worsen my T by moving my jaw.. is it normal? I've heard that a lot of people can do it too.

EDIT: nevermind, I'll do some reasearch.. but now this is bed time. Welcome on this forum, though. I was not a forum guy at all before 2018. Surprisingly, this forum is helping me a lot even if I have mild T.

You can read my story if you want, its on this thread, not so far.

 

[Contrast]

spend every waking moment of your life advocating for bio-medical research to repair the inner ear, don't listen to the nutjobs who encourage you to live with the suffering.

 

[zazzeus26]

Yo Anthony,
I read your story about your tinnitus. I am new to this tinnitus thing also and have lots of questions and reading to do.
From what I have read, if you can manipulate the sound of your tinnitus through movement of the neck, jaw, or pressure on the face/head, you have "somatic" tinnitus. Some people are somatic and some are not with their tinnitus.

Peace

 

[Greg Sacramento]

@zazzeus26 Been to Reno about 6 times - I live in Sacramento. When I was younger I lived in Massachusetts and New Hampshire. I loved Jay Peak. @The Frenchie Visited France in 1975. @MajaC Been to East coast Canada.

My "T" has a high frequency hissing sound and will pulsate at times when standing up quickly. I can manipulate my "T" intensity by pushing on the left side of my face or when turning my head to the left. Somatic?

Appears to be your SCM neck muscles, C1 and C2 involvement and the mandibular ganglion.
http://www.natural-solutions-for-muscle-pain.com/sternocleidomastoid-muscle.html

The Frenchie: http://www.michiganear.com/ear-services-facial-nerve-problems.html

 

[zazzeus26]

@Greg Sacramento thank you for the info regarding the SCM. Going to do some more reading on the subject. Any info to provide some relief is greatly appreciated.

Many awesome days skiing the East, especially Jay Peak.

Peace

 

[Greg Sacramento]

@zazzeus

My "T" has a high frequency hissing sound and will pulsate at times when standing up quickly. I can manipulate my "T" intensity by pushing on the left side of my face or when turning my head to the left. Somatic?

Just thinking that if you ever had an accident while skiing even as far back as fifteen years ago, then neck muscles, c -spine and probably jaw may be the reason for developing somatic tinnitus at this present date in time. Muscles would include the SCMs which could have been injured and placed off balance starting years ago.

Your c-spine could have straighten or started to with a skiing fall. Once the c -spine starts to straighten or just injury to the c-spine then alignment may be off. Other problems that can develop from this over time include: disc space narrowing and possible joint and facet arthritis development.

If you haven't got a neck x ray, then I would consider it. Next would be a MRA, then maybe a CT. Then depending on results of tests, a physical therapy doctor, first for consultation, then maybe for treatment.

 

[zazzeus26]

@Greg Sacramento,
Yes my body has been punished throughout the years. I never had any serious crashes when skiing but messed up my back playing football. I have terrible posture and lower back pain.

I am a teeth grinder and have terrible anxiety, so my muscles are tensed all the time. I have been stuck in "flight" mode for the past 10 months. I lost my Mother and two dogs this past year. Stress could very well be the main ingredient of my onset of Tinnitus/hyperacusis.

I will be doing the SCM exercises and just emailed doctor to get referral for CT scan.

After the CT scan, neck x-ray, and sleep study I am done. Habituation will be my only salvation. After 3 months of reading about this horrible monster there is no cure.

Peace

 

[Mark A]

Hello from Reno Nevada.

You have hearing loss in one ear. Was that a surprise, or did you know that before the test? You have any idea what caused your tinnitus?

 

[zazzeus26]

@Mark A
I knew I had hearing loss. The night my "T" kicked in my ear popped. A few days prior, I felt pressure in the left ear. I believe my Tinnitus was caused from stress. Again, prior to the "T" I had gone days without sleep. My body had been stressed and I was not healing due to the lack of sleep.

 

[Contrast]

there are no specialist you can see, no known current available technology can repair the inner ear and audiotory brain.

Most of what you read on the internet in all likelyhood are scams promising miracle cures, however there is a clinical trial by Frequency Therapeutics that is focusing on repairing inner ear hair cells and that should have an effect on reversing hearing loss and tinnitus and possibly hyperacusis's.

 

[JohnAdams]

there are no specialist you can see, no known current available technology can repair the inner ear and audiotory brain.

Most of what you read on the internet in all likelyhood are scams promising miracle cures, however there is a clinical trial by Frequency Therapeutics that is focusing on repairing inner ear hair cells and that should have an effect on reversing hearing loss and tinnitus and possibly hyperacusis's.

Right. Join the crusade. Contrast. You're a smart man and a valuable resource.

 

[Contrast]

the worst thing anyone can do is throw their money at "specialist"

there is no current treatment for this condition other then sound therapy and that is controversial in itself.
you can surf the internet until you find bias confirmation that sound therapy cures every case of hyperacusis but it's better to support bio-medical research for the condition.

 

[coffee_girl]

There is no cure for tinnitus, the only treatment right now is time and patience

 

[Julia Garrett]

Hi zazzeus.
Your symptoms sound exactly like mine and I have Endolymphatic hydrops. Look it up and see if it fits. I have episodes where it is bad for 3 months 24/7 then it calms down and I have more settled patches but I eat a strict diet, no salt, spices, caffeine, alcohol, sulfites, convenience foods, sugar. You get used to it but it is the only thing that helps my condition. Even meds aggrevate it and the main triggers are stress and weather pressure changes. The specialists here don't get it at all, I get no help, have got all my info from US ear institutes.

 

[Julia Garrett]

P.s I'm in Birmingham England

 

[Julia Garrett]

Also, I use an in ear tinnitus masker and take valium for sleeping issues if I get desperate, otherwise I fall asleep.with music, usually gospel or something relaxing. Let me know how it goes. Mine has completely changed my life but I'm getting through. My main problem is I can't find anyone who has what I have, it's so difficult to explain it to anyone.