Episode 18: Tinnitus Realities — Steve and Sean

Loved this episode!

One of the hardest thing about tinnitus for me is people around me not understanding how hard it is to oftentimes just make it through the day.

Somehow I feel less alone in this struggle when I think back on some of your comments.

I really appreciate you all taking the time to make this!

 

I’m glad to listen to your podcast. I did achieve habituation for about 2 of these last 9 years. However, generally speaking adjusting to size 26” jeans with a waist size of 34” (to use the oft cited metaphor) is extremely challenging to say the least.

Nine years ago, I experienced a catastrophic first year where I lost 30 pounds, from 150 to 120 at 5’8”, never slept more than 90 minutes for months, experienced panic attacks, heat stroke even with weather in the 70s and had extreme hyperacusis where the neighbor’s air conditioner sounded like a Boeing 747. I went on disability and barely made it through those first months. (I asked my GP for the safest sleeping pill and the 1 single tablet of Ambien caused major suicide ideation for about 3 hours that I managed to address with meditation, pranayama, incense, chanting mantras, and my knowledge of Ayurveda.)

Anyway 9 years and $125,000 later, multiple ENTs, TRT, sound enrichment, acupuncture, Klonopin, celexa, gabapentin, Ayurvedic treatment that was very helpful for the 6 weeks just before COVID-19 hit that I spent in India and one month after... and I’m dealing with pretty heavy tinnitus again - from the rare day at 4 up to 8. (I did have about 2 calmer years where severity and reactivity both were about 4.)

These days, I anticipate at some point I might decide suicide is (not my preferred) but remaining option if and when I reach a full state of exhaustion depending on whether quality of life becomes so painful it’s not sustainable.

It could be useful, albeit depressing, to interview people years in who are still facing major obstacles to habituation.

On another note, if anyone has a therapist suggestion for general life issues, I’d be interested in MA, USA suggestions. I’d vastly prefer a psychologist familiar with tinnitus and its challenges.

Thanks so much. No intent to alarm people here. I’m nowhere near seeing ending life as being in my greatest good, but there may come a point after any number of years in the future where I reconsider whether that’s going to be the remaining choice to achieve relief.

 

By the way, I want to thank you for mentioning TinnitusPlay. I downloaded it sometime ago and I forgot just how good the water sound is compared to quite a few of the various sound enrichment tracks or apps I have.

 

Why does my snap, crackle and pop; gun fire and bug sounds come at night about 9-10 P.M.?

 

"...I would love to have silence back, but I cannot obsess over it... I can grieve the loss of silence in my own way, but I can't sit here and be downtrodden by it."

Right on, well stated, we all miss the sweet blessing of silence brother.

 

This was a great podcast. I can relate to a lot of what was discussed, especially the conversation about feeling guilt when the tinnitus permanently worsens.

 

I’m late to the party, but this was really good. The dismissiveness and downplaying by some Doctors when it comes to tinnitus and other ear disorders was a big reality check for me as well. When I was at my worse and looking for answers, I went to an Audiologist who barely knew what hyperacusis even was. After explaining to her, she still didn’t get it. Her high pitch voice were wrecking my ears in the process. Was a big wake-up call.

Anyways...

For the last 4 months or so, I’ve changed the way I sleep. I sleep on my back, put 2 pillows on each side of my temples covering both ears so I can only hear my tinnitus which I classify as variable. I’m still not there yet, but I do feel like I’m starting to get less and less bother by it compared to when I was at my worse. The more I listen to it, the less reaction in emotion I have towards it. The tough part is trying to adapt to a tinnitus noise that constantly changes in cycles week after week.

Keeping yourself busy definitely helps as well.

Thank you @Jack Straw, @Steve, and @Hazel for this insightful podcast.

 

I just heard it today. Thought it was awesome. Thanks for your contributions.