Two Tinnitus Worsenings within Four Days — Massive Setback in Overcoming Major Depression

[Leila]

But for her to say that my tinnitus and hyperacusis, the source of my suffering that I have actively been seeking help for since 2019, is merely a symptom of an underlying neurological disability made me furious.

I understand your anger and frustration very well. Because I've been treated similarly by doctors. The moment they didn't know what to do with me anymore it was, "Have you ever considered you tinnitus being psychosomatic?"

It made me furious because the pain of a tinnitus sufferer isn't any less real than the pain of a burn victim's pain just because it doesn't come with visual aids.

Since then, I've learned to swallow quite a lot of my pride!

You want to reach a certain goal: a disability income. People in the medical field can only work with what they are provided as far as symptoms are concerned. Picking up on some will make it easier / more likely for them to "aide" you in reaching your goal. I know, it is very hard to read false and hurtful diagnoses about oneself, but if that's what it takes to give you / your family the support that you need, let your doctors write whatever they need to write.

Does it help in claiming a disability income to be diagnosed autistic or to have ADHD? Don't fight it! If a couple of months / years down the road things are going to improve, you can always put the record straight or recover to the point somebody puts it straight for you, but with the way things are for you and your family at the moment, who really gives a damn about what some doctor puts to paper?

What's important for you to know / find out is whether those additional diagnoses are actually helpful in furthering your claim.

You seem to have amazing parents! But I get that the way they are trying to show their support is making you uncomfortable. It is a very radical choice but if it is done out of love and doesn't come with conditions, accept is as a sign of their love for you and love them back for it with everything you have!

Watching a person you love suffer without being able to offer any kind of relief is one of the hardest things to experience. And it really puts things into perspective because what use is money and everything it can buy you if it cannot give the person whose suffering you are forced to watch a single second of relief?

I wish you and your family all the strength in the world!

 

[GrodanB]

Back again for more venting. For like the 8th time.

The low frequency tones are still rapidly worsening, ear pain is starting to feel chronic, not just when exposed to noise. Like full on pain, no matter what I'm doing.
I tried sitting without earmuffs for an hour at the PC and I had forgotten how reactive my tinnitus is, it felt like a fire alarm was going off in my ear after I put the earmuffs back on. Only noise I was exposed to was my PC's cooling fans, which are located on the other side of my wall in a completely different room.

The tinnitus is officially starting to wake me up from my sleep, which has never happened before. I get these really intense random spikes in tinnitus that last less than 10 seconds which I have had for years. But only now I'm actively being woken up by them.

I resorted to chugging down alcohol for the first time, which felt great. All of this shit instantly felt less bothersome, not just the tinnitus. And even after sobering up I feel like the intrusive thoughts from my OCD has been popping up less. Of course it's not a sustainable source of happiness but what choice do I have. I'll barely make it to 30 anyways. Three hours of laughing and numbed emotions with the drawback being some liver damage, fuck it.

Yup, I'm just falling apart like usual. Hoping for some kind of goddamn cure or some shit. Happy Easter.

 

[Jupiterman]

Yup, I'm just falling apart like usual. Hoping for some kind of goddamn cure or some shit. Happy Easter.

I think this is your best option. Hang in there. There are quite a number of treatments and possibly even cures being worked on just now.

There is a wide and varied opinion on the forum as to when the first game changer could appear on market. Dr. Shore's device could be available as early as next Easter; drugs to treat symptoms within 3-5 years and regenerative medicine (a cure) in 10-15 years.

You have every right to look forward to your better life after benefitting from these forthcoming medical advances.

 

[GrodanB]

I came back wanting to give an update. If you dislike negativity, don't read it.

My tinnitus is still worsening every day; new tones, frequencies, worsened pre-existing noises. A low hum has completely taken over my head and consciousness, it is deafening. It sounds just as loud whether I cover my ears or not. I lost count how many changes have happened and how many new tones have came to existence, I stopped noting them down because it was so mentally draining scrolling up and down that fucking paragraph of notes and dates and details about what I was doing when it appeared, how I felt, what I ate, how long I slept, whatever.

The tones I developed back in April when it started getting really bad have been completely covered over, and there was a period of time where I thought they had vanished, but no. The ones that came after just completely drowned out the other ones. I can sit in silence and find new tones, old tones I had forgotten about, tones that have gotten louder without me noticing. It's just layer after layer of noise and it's incomprehensible.

The sound enrichment failed, my pain threshold kept lowering and things that didn't cause pain started causing pain, the pain lingered for longer and filled my ear with a dull ache that would last days. Now I'm back to wearing earmuffs.

I feel gaslighted by the ENTs/healthcare, I feel rejected, ignored, not taken seriously. I have developed paranoia because of these bastards who refuse to listen. I send a message, a call for help and action every day hoping that they will do something. I try to make it easy for them by just asking for medicine but it won't matter, they are over it and have made their stance (ignore me until I'm gone). I'm all alone.

I slowly realize I have reached the acceptance phase, I am getting closer to ending my life, there is no end in sight for the worsenings. These permanent worsenings that will haunt me forever, and serve as a constant reminder how helpless you truly are once the ENT doctors write you off as depressed or any other neurological condition that will make their jobs easier.

I have nothing positive to add, I have sat here in my room like always, chugging down random supplements or whatever kind of diet that could help. I will never have a job, I will never go outside regularly, I will never participate in society, I will never have a loving partner, I will never have stability and I will forever be forced to live off of my disability benefits that I receive monthly. I became the thing I feared the most.

I used to come here to kind of remind myself that some others have it worse, and in a cruel way made me feel better because of it, not from a place of malice of course. But this past year has turned me into one of the cases I would read for comfort. I have become a beacon of misery and just pure suffering.

You people are amazing, all of you on Tinnitus Talk. Having someone actually read what you type and can project a single ounce of understanding and care is something I have never felt during my visits to the psychiatrist. Thank you.

Thanks to everyone who interacted with me, replied with tips or positive messages. You kept me going.

 

[dan]

Shore's device could be available as early as next Easter

Fail #1.

drugs to treat symptoms within 3-5 years

Fail #2.

regenerative medicine (a cure) in 10-15 years.

Fail #3.

Sorry for being pessimistic, but all this was said over a decade ago when I first got tinnitus...

The only noise I have exposed myself to the past week is the rain, my table fan, shower, and my vacuum cleaner (I wear noise-cancelling headphones while using the vacuum cleaner by the way).

Do not vacuum, PERIOD, even with hearing protection.

Even so, noise "cancelling" is deceptive, you can't cancel noise, it isn't a math equation. Just because you can't hear it doesn't mean the noise isn't reaching your cochlea. It's just a gimmick for non-tinnitus people to be able to sleep on airplanes.

There are expensive vacuum cleaners on the market that are low decibel (~60 dB) like the Miele brand has a $500 low dB vacuum. The regular vacuums are ~90 dB.

 

[Muggumbo]

@GrodanB, you are definitely a strong person for being able to take all of this. I hope things ease up for you as soon as possible or treatments become available soon. I sincerely hope you're still around in the future posting a success story.

I continuously fear mine worsening in a similar way and wouldn't even wish this on my worst enemy. Tinnitus is such a terrible disorder.

 

[StubbyJ]

I've had more setbacks than I can count and have always come back with a higher threshold. Hang in there. At one point in time, my left ear was a combination of a jet engine (as loud as a hair dryer), oscillating tea kettle, scratching brake pads, morse code, and a little guy using a ball peen hammer on a railroad tie about 50 yards away. The cherry on top was when I developed pain hyperacusis, pulsatile tinnitus, and what I called my mini spark plug. My mini spark plug was kind enough to keep me awake, shocking what felt to be my cochlea in random cadences.

Talking to the medical field about this stuff is a complete waste of breath.

If you can deal with this crap, you can deal with anything. I'm in no way diminishing your situation or feelings... I've simply been there, the pit of despair.

Focus on relaxing your neck, especially those SCMs.

 

[GrodanB]

I'm back.

The tinnitus has doubled in volume, but somehow, through all of it, I've regained my will to live. I've had plenty of time to reflect and connect the dots as to why this is happening. It seems to be narrowed down to a few possible causes: nerve issues with my neck, hair cell damage from low blood oxygen levels caused by central sleep apnea, or patulous Eustachian tube dysfunction (ETD).

There are two specific tinnitus sounds that seem interconnected between my ears, and I can make them quieter by applying pressure to my ears. I'll make a separate post explaining this in more detail.

I'll be getting a sleep study soon, and I will probably get an MRI for my neck. If I'm diagnosed with central sleep apnea, I expect they'll order an MRI to check for brain damage or nerve issues in my neck. If not, I plan to pay for a private scan myself.

I'm feeling pretty confident that I will find the underlying cause, but I'm still scared that even if I do, and manage to fix it, the tinnitus might not decrease in volume. However, I'm choosing not to worry about that until I've solved everything else.

 

[Jupiterman]

I will probably get an MRI for my neck. If I'm diagnosed with central sleep apnea, I expect they'll order an MRI to check for brain damage or nerve issues in my neck. If not, I plan to pay for a private scan myself.

MRIs are very LOUD.

Are you sure this is a good idea?

 

[tiniturk]

I'm back.

The tinnitus has doubled in volume, but somehow, through all of it, I've regained my will to live. I've had plenty of time to reflect and connect the dots as to why this is happening. It seems to be narrowed down to a few possible causes: nerve issues with my neck, hair cell damage from low blood oxygen levels caused by central sleep apnea, or patulous Eustachian tube dysfunction (ETD).

There are two specific tinnitus sounds that seem interconnected between my ears, and I can make them quieter by applying pressure to my ears. I'll make a separate post explaining this in more detail.

I'll be getting a sleep study soon, and I will probably get an MRI for my neck. If I'm diagnosed with central sleep apnea, I expect they'll order an MRI to check for brain damage or nerve issues in my neck. If not, I plan to pay for a private scan myself.

I'm feeling pretty confident that I will find the underlying cause, but I'm still scared that even if I do, and manage to fix it, the tinnitus might not decrease in volume. However, I'm choosing not to worry about that until I've solved everything else.

I'm proud of you, man. You've come a long way. Your case is probably one of the most extreme I've ever read, but hopefully, the underlying causes can be treated.

 

[GrodanB]

MRIs are very LOUD.

Are you sure this is a good idea?

I know, and I've avoided MRIs for this exact reason. However, my hearing has been consistently deteriorating for years, and at this point, nothing can convince me not to go through with it.

I plan to use 34 dB SNR foam earplugs, with silicone putty earplugs on top, secured with tape, and wear earmuffs as well. Most of the noise will likely travel through my skull at that point.

 

[Kumashi]

I know, and I've avoided MRIs for this exact reason. However, my hearing has been consistently deteriorating for years, and at this point, nothing can convince me not to go through with it.

I plan to use 34 dB SNR foam earplugs, with silicone putty earplugs on top, secured with tape, and wear earmuffs as well. Most of the noise will likely travel through my skull at that point.

Here in Texas, they don't allow you to use your own earmuffs. You have to use the ones they provide in order to listen to the MRI instructions and for two-way communication.

 

[GrodanB]

I'm proud of you, man. You've come a long way. Your case is probably one of the most extreme I've ever read, but hopefully, the underlying causes can be treated.

Thank you. I never thought I would get this far.

Here in Texas, they don't allow you to use your own earmuffs. You have to use the ones they provide in order to listen to the MRI instructions and for two-way communication.

I'm willing to bet it's the same here. I am prepared to use whatever earmuffs they provide, as long as the SNR is acceptable.

 

[GrodanB]

I had the MRI done, but I was definitely not prepared for the so-called "earmuffs" they provided. They didn't even cover my ears properly; they just sat on top, pushing my ears into my head and causing intense bone conduction.

I ended up canceling the scan after what I guess was about three minutes, although I was so stressed it felt like hours. Thankfully, I used the best earplugs I could find, with a wax plug on top for extra protection. It was loud, but my hyperacusis pain was mild, so it was hard to tell if it was actually too loud. My tinnitus did not spike during or after the scan, but honestly, at this point, I would take a noise-induced spike over whatever else is happening in my ears.

They scanned enough to get some results. My C5-C7 discs are slightly bulging, but there was no visible nerve compression. The brain scan was canceled completely.

I am probably going to get a CT scan for my brain after I complete the sleep study, but the clinic has been useless, constantly delaying the study for silly reasons. I am seriously considering just buying an ASV machine myself, even if it is expensive, and using the data from that. The data might not be perfect, but at least it would give me some insight and help me prove these clueless doctors wrong.

My sleep issues are worse than ever. Comparing my sleep quality now to 2019, when I was extremely depressed, is shocking; back then, I slept like a baby. Now, I have both insomnia and breathing issues. I stay awake for more than 19 hours a day without feeling tired, and even when I do, I still can't fall asleep. I am stuck between "sleeping" with potential hypoxia, which only seems to cause more harm, or staying awake far too long and facing even more health issues.