I'm Travis, My Tinnitus Is 10/10 — Please Send Good Vibes and Advice

Yeah my brain just won't turn off because the tinnitus has gotten so loud, even when tired, it won't let me sleep. Seems there is no limit to how high & loud tinnitus can be. I seemed to have pushed the boundaries way too far. Wish I had found this forum in Octu and read up.

 

Hi, Greg! I looked up the tests you have recommended for the autoimmune and middle ear condition. But these tests can be positive if one has some other infection in the body or sometimes can be false positive. One can have low inflammation in any part of the body that you are not even aware of, or maybe it can be transient and can resolve on its own.

If those tests, even some of them, are positive, how do you know it is related to autoimmune inner ear condition? How can you find out?

Thank you!

 

@Ela Stefan - sure very complex - many needed tests, time consuming and diagnoses could take years, but for many members here, autoimmune is often doubtful, unless tinnitus and hearing loss appeared with COVID-19 or from being vaccinated. Bacterial infection can be measured and that's needed when receiving tinnitus after a COVID-19 vaccination. Veins, arteries and nerves within neck, need examination as cause for certain autoimmune diseases.

Always consider an initial situation, habit or event if known as cause of a primary health problem including tinnitus and forget about researching other this and that. One needs to try to stay calm and keep anxiety at a low - not easy.

For you, as having sent me ear examination test results with notations, your situation is specific to an environmental cause and treatment worked. I believe your doctors are thinking your tinnitus will greatly improve in time. Give your physical nerves time to heal.

 

"Inflammation is a complex biological response to harmful stimuli including infection, tissue damage, and toxins. Thus, it is not surprising that cochlear damage by noise includes an inflammatory component. One mechanism by which inflammation is generated by tissue damage is the activation of damage-associated molecular patterns (DAMPs). Many of the cellular receptors for DAMPS, including Toll-like receptors, NOD-like receptors, and DNA receptors, are also receptors for pathogens, and function in the innate immune system. DAMP receptors are known to be expressed by cochlear cells, and binding of molecules released by damaged cells to these receptors result in the activation of cell stress pathways. This leads to the generation of pro-inflammatory cytokines and chemokines that recruit pro-inflammatory leukocytes. Extensive evidence indicates pro-inflammatory cytokines including TNF alpha and interleukin 1 beta, and chemokines including CCL2, are induced in the cochlea after noise exposure. The recruitment of macrophages into the cochlea has also been demonstrated. These provide substrates for noise damage to be enhanced by inflammation. Evidence is provided by the effectiveness of anti-inflammatory drugs in ameliorating noise-induced hearing loss. Involvement of inflammation provides a wide variety of additional anti-inflammatory and pro-resolution agents as potential pharmacological interventions in noise-induced hearing loss."​

That's where I screwed up not addressing the inflammation from noise traumas and then the laser therapy didn't help.

 

Do you have tinnitus constantly at all times, or does it come and go?

 

@Greg Sacramento, I guess it's best to find a tinnitus specialist to order such tests as CRP, ESR and ANA to find if inflammation is the issue? Interesting that you mentioned red or hot ears... this happens to me regularly (actually I've had that since before tinnitus.)

How would one find an ENT skilled/capable enough to inject intratympanic steroids?

Thank you for any help,
Jan

 

We are all pulling for you @Travis Henry. Please do your best to hang in there. I am new to this too - wish I had more advice to give you.

 

Red or hot ears from infection that began from a centralized infection? Maybe from a gut processing area causing a tubular problem and that infection also weakened your jaw and maybe also settled in mastoids?

This could cause some hearing loss, but hearing loss would need to be sloping. If your jaw is sore, I would get a cone beam exam before using a mouthguard. MRI is too loud for this exam. A cone beam consists of sitting in a chair for less than a minute. It's not loud, but foam ear plugs are recommended with tinnitus. A cone beam study could provide many answers.

What do you think? I will wait for your thoughts before discussing other possibilities.

 

Hi @Greg Sacramento, either you already read my introduction thread on this forum, or you are reading my mind LOL.

My tinnitus started after having resection surgery of my large intestine... They removed several inches. I had no infection from that surgery, however in the past couple of years I have had multiple outer and middle ear infections My ENT had a CT scan done, which found chronic serous mastoiditis, right side- some fluid buildup on the left but not as bad. I had several weeks of antibiotics and a followup CT scan, which showed a decrease in fluid in the right mastoid.

I already had an MRI, but the ENT said it was pointless in regards to the mastoid issue - the CT scan shows what's really going on in the mastoid, according to him.

Maybe a dumb question, but do I just go back to my ENT and request a cone beam study? What would I say I am looking for? What answers might this study provide?

As for my hearing loss - not sure if it is sloping. I do have a detailed report of my last hearing test, but I didn't want to burden people by posting that whole thing.

Thank you for your thoughts and feedback!

 

It's constant and only goes up unless I sleep a long time and it goes down some before I start moving around.

 

I'm so lost on how to get better now. My symptoms are so bad now.

My tinnitus is at a 10 of 10 24/7 and can spike past that. It reacts to everything, I can't talk on phone without it reacting. I can't listen to any audio at all without my tinnitus reacting. I am wearing earplugs 24/7 indoors that don't block out all sound, but my tinnitus is still ramping up throughout the day. I long for the days of just having screaming tinnitus.

Wish there was a hyperacusis expert I could speak with and help me do all the right things to heal. I'm so lost.

 

Do you get ear pain every time your tinnitus spikes?

 

Not really. It just reacts to sound & becomes louder, it seems.

 

Like your head is continuously roaring? That is mine. Sometimes it changes into a more easy fizzy thing, and then goes back to the roaring. Many times in silence it is like it learned the pattern and it just keeps playing it over and over.

Yes, cars, traffic, running water, AC, talking can still make it worse.

 

Travis, how are you doing? Have you found any help in our area (D/FW)?

 

I have had to take a benzo every night for 5 years to sleep. Hate having to do this but cannot sleep with it.

 

Yeah pretty much everything makes it worse. I am stuck in my room with earmuffs on and earplugs in most of the day. Just trying to make it through the years till regenerative meds are out & hoping for some miracle I heal up some to have some enjoyment again. Right now it's hard to have any joy or comfort with how loud this is by the end of the day. It starts out pretty calm but still loud and then ramps up the second I start thinking or moving.

It sounds like a spinning electrical cicada and a electrical facet on high. Hard to explain.

 

I have have to take 2 mg of Ativan a night to sleep. Got put on it when they took me to the hospital & then they threw me in the psych ward against my will, which was stupid because I'm not crazy and I've only been suicidal because of how bad my symptoms are and throwing me in a loud psych ward was the last thing I needed.

 

Not doing that great. I am homebound and in double protection almost 24/7. All sounds seem to make my tinnitus worse. Talking, using phone, and audio. I take my head gear off some each day to let some sound in, but with loudness hyperacusis, even with double protection, I still hear sounds.

I haven't found much help in DFW. Only bad advice from ENTs and bad medications. They denied me steroids that could have helped me in my initial onset and pretty much told me I needed to see a psychiatrist and not over protect my ears which wound up me worsening.

 

Being on a benzo made me depressed initially, but accepting I needed it to sleep and then finding natural ways to offset the depressive state it leaves me in is what helps me cope. Lots of fresh air, exercise outdoors: hiking, walking, cycling, swimming, etc. positive self talk; distraction.

A lot of people talk negatively about benzos, truthfully they have saved my life and keeps me functioning.

Praise yourself for every little thing that goes well. That you could sleep; that you chose a healthy snack; that you brushed your teeth; etc. Be kind to yourself.

 

@Travis Henry, I've been to the psych ward too - they're awful places. I don't see how they help anyone. I'm sorry you had to go through that.

 

How did your hearing recover? I thought there is no treatment yet.

 

Hi,

Well I think the key here is that my hearing was not damaged. After that horrific concert in 2015 I had my hearing checked and it was perfect. So my ENT used an analogy that I thought was really helpful in terms of understanding what was going on. She told me to think of my hair cells as reeds in a pond. They weren’t broken just bent. They need time to recover.

Of course I started taking really good care of my hearing after that. I had custom musician earplugs made and I take them everywhere I go and even in a loud restaurant I put them in. I don’t overprotect because I don’t want to develop hyperacusis but I am very careful. I also have a decibel meter on my phone. You’ll find on this website lots of disagreements around whether those are accurate, or even whether the custom-made earplugs are better or not than foam. I prefer to listen to the audiologist and the ENT, who is actually studied hearing loss. I know they can’t fix tinnitus and they get a bad rap for that because it’s a neurological condition that usually starts from the audio logical system but in the end, it’s really your brain generating the sound. ENTs can’t fix your brain.

However, I will also offer this experience for hope. In 2020 I had some sort of event in my left ear. And I had an appreciable drop in one frequency. It dropped to 30 dB so some mild hearing loss. Then it dropped again to 35 dB a year later. I developed tinnitus in that ear as a result in 2020. I took steroids in 2021. My hearing, incidentally after a very loud MRI, went back up to normal. I’m on the lower threshold of normal but still normal. But nonetheless the tinnitus resolved at least for now. It has been a year. I have other problems now with tinnitus now but not related to those events.

Take care,
Danielle

 

You had hearing loss before, but the noise of MRI made you recover your hearing? Or maybe it just resolved the brain maladaptive process.

Did you have a loud event in 2021 for which you took steroids?

Thank you!

 

@Greg Sacramento, my earmuffs are pressing on my TMJ and my cranial nerves might be inflamed. My shoulder has been hurting for a long time. When I press my neck back really hard, it shoots my tinnitus to the moon like that is causing some of my tinnitus, like something is pinched...? My shoulders are really really tight too.

Any suggestions?

 

Go see an upper cervical chiropractor.

 

Hi,

No, I don’t think the MRI had anything to do with my recovery of my hearing. I just happen to insert that in my post because of course they’re ridiculously loud and the purpose of me having my hearing checked after the MRI was to see if I had lost any more of my hearing. It was, ironically, that hearing test that showed improvement in my hearing.

I had mild unilateral - left ear - SSNHL in 2020 in one mid frequency that resulted in tinnitus. I had a further dip at the that same frequency in early 2021, causing a change in my tinnitus. It went from a seashell echo sound to a pure tone ring. I hated that. That tinnitus resolved by May of 2021 when my hearing improved. I had taken a course of steroids in February.

I will say that my general hearing has worsened since my 2020 test. Everything is still within normal limits but some higher frequencies have dropped.

Hope that answers your questions.

Best,
Danielle

 

Did you have head noise?

 

Travis, sorry, I missed seeing your tag to me.

Most all of your posting in relation to tinnitus has a single primary cause and that is your neck is not supporting your head. Any prior noise input is secondary.

I promise you, if you see a certified neuro-posture specialist or just a certified posture specialist, your tinnitus and all in relation - shoulders, jaw, bending forward, etc; will greatly improve. You may need to a soft neck brace for a couple of hours per day.

In the below article read section: Connection Between Neck Problems and Tinnitus

Neck Problems That Trigger Tinnitus – Causes And Solutions

 

Yeah I still do but not as much.