Tinnitus, Illness, & Medical Trauma

Hi everyone,

I have been a long-time lurker of Tinnitus Talk, and I’ve finally decided to join. My story is a complicated one, but I’m sure many of you can relate.

I've had tinnitus for as long as I can remember. It was so faint that I didn’t even know what it was! I remember unplugging things in rooms because I thought they were making a noise. Little did I know.

In September of 2023, I became very ill. Along with crippling facial pain and autonomic issues, I endured horrendous tinnitus, hyperacusis, sound distortions, and absolute chaos. I'm someone who thrives in solitude and silence. I’ve always been level-headed, grounded, and a calm person. My career can put tremendous pressure on me, but it was where I thrived. I felt like I was always “calm under pressure.” This experience undoubtedly damaged me to my core. It shook me and made me question my identity. Any little crack I had in my armor fell apart. The worst of me came out. I wasn't able to be with myself through this. Nothing in life matters if you can’t have peace of mind. I didn’t understand that if you can’t have peace of mind, you can’t have anything.

Moving my hand against my bed sheets made a chirping noise. High-pitched sounds caused fluttering in my ear. At one point, I had about four different tones. My tinnitus was "electric" and hissed and buzzed in my head. I had no idea what was happening. My right ear felt cold and wet inside. I also had an onset of floaters. The white noise I had listened to every night for ten years sounded different. It was terrifying. Showers didn’t mask it. Test after test yielded no results and no answers. I was miserable, hopeless, and scared. That's when I turned to Tinnitus Talk. So many of your posts resonated with me. I was in excruciating physical pain, but the tinnitus and ear issues were the worst part.

Doctors didn't believe me. I never felt heard, understood, or cared for. I went from having everything to nothing quickly. I had to go on leave from work, my boyfriend left me when things started getting really bad, and after about six months, some friends stopped checking in on me. But my family and very close friends never wavered. I’ll never see the world or people the same way again. I truly believe I was naive and saw the best in everyone. Now, I can't say I feel anywhere close to that. I walk through life suspiciously, always waiting for the next thing to drop. The silver lining is I found out who my fair-weather friends were.

It’s almost been a year. I'm lucky. My tinnitus has gone from a 7-8 down to a 2-3. Sometimes, it'll spike to a 5. Overall, I can’t complain. I’ve told all my friends, and they are now very conscious about their ears. I no longer have any other issues, although intuitively, I know my body is still healing from the viral infection or whatever it was that took me down to begin with. I had to see a doctor the other day for unrelated reasons, and the medical trauma is real. My blood pressure at home is normal, but at the doctor’s office, it’s absolutely through the roof.

The support I need now is dealing with the trauma aftermath of all of this. This experience dismantled me. I feel like I was stuck in fight or flight mode for nearly a year. I don't know how long it will take to feel normal again. I don't think I ever will. I don't know how to navigate a life where everything now seems superficial.

I’m happy to finally have the courage to join and speak with all of you.

 

@Verify_Checked, welcome to the club nobody wants to join. You're doing well, being at 2-3 within less than a year. That's indeed lucky. I hope it further improves!

You probably read everything there is to read about it. You mention facial pain. This potentially points to trigeminal nerve involvement. If you have not already, check your jaw and neck muscles; even if you don't think you have any issues, they could be contributing to your issues in the off-chance. It might be good to see an experienced TMJ physical therapist.

Between all these symptoms, it is pretty clear it is a "brain failure" triggered by a sinus infection, potentially involving thalamic dysrhythmia and/or perhaps central sensitization. The increase in floaters is the telltale sign. You mentioned being familiar with my story. For me, the noise trauma was the primary factor, but I still think a viral sinus infection was a significant contributing factor as well.

 

A neurologist I saw (the most helpful of them all) talked about central sensitization but didn’t mention thalamic dysrhythmia. I’ll read about it.

Interestingly, you mention TMJ & neck issues because an ongoing problem of mine is the right side of my head, neck, and down to my hip. Are chiropractors the next best step? Massage therapy?

Thanks for the reply. I’m glad your tinnitus is down to a tolerable level. I was diagnosed with POTS, which appears to be getting better, too. To me, it all has to be connected somehow, but doctors dismiss & deny it and then refer to psych. I admire anyone with the strength and mental fortitude to be in this club at levels I can’t imagine. I was treading water & barely kept my head above it.

 

Swedish massage can stimulate the central nervous system and potentially help alleviate tinnitus. It's advisable to avoid neck manipulation by a chiropractor as it may exacerbate the condition.

 

I've been on this roundabout for six months, and it is destroying every part of my life except my faith. People don't ask me how I am anymore. Most of my friends avoid me or don't answer my texts.

One guy who has had tinnitus for 20 years has checked in on me weekly. If it were not for him and the many success stories here, I would not be able to make it.

 

I am so sorry, @Bob3382.

Going through something like this shows us who our true friends are. It can be a very shocking experience.

My thoughts are with you.

Hugs,
Juliane