I've set my foot on the first part of a journey that I'm not sure where it'll lead, but I do know that it's going to be emotional so this is the place I'll be putting those experiences.
A little background
Around 20 years ago my tinnitus came. Tinnitus, apparently affects 1 in 10 people. I'm one of those. For the most part it's a high pitch frequency that I can constantly hear.
The sound gets drowned out as my attention is pulled, such as being engaged in a conversation, or when I'm listening to music and coding, the ringing is lessened, more like it's in my peripheral sound - if there's such a thing.
Ordinarily though, it's loud. It gets louder when I'm stressed or tired. And that's a vicious circle in itself. I go to bed, I can't sleep because of the sound in my head, I get tired, the tinnitus gets harder to deal with and repeat.
It's hard to really share the idea of a sound you hear in your head. For me, the tinnitus rings around where I imagine my spine joins my skull at the back. From a technical perspective, from my understanding, (subjective) tinnitus is my brain adjusting for a sound it thinks it can hear and thusly creates sound as a side effect. The sound isn't actual audible sound either, not externally, so it's my brain's way of making things up for me.
If you want a vague idea of what this is like, take the controls below and move the slider to around 8000hz and then listen to that for 16 hours (or maybe a few seconds).
For me personally, I can get very emotionally stressed and I tend to hold on to that feeling of frustration for a long, long time. It's a matter of control and the misconception that I can control my environment. Tinnitus spits in the face of this and it's at odds with my personality. I cannot let my tinnitus upset me or stress me out simply because I cannot escape my tinnitus.
I've done some light reading over the last decade on research into tinnitus treatment. Most of the best approaches (as you can see on the NHS website) are based around mindfulness. Rise above it, as it were.
There was some trials that used "notched" audio to help reduce tinnitus. Summarised, this involves finding your tinnitus frequency, removing that from some music or sounds (like white, pink or brown noise), and then listening to the notched sound for 3-6 months. When I first looked into this back around 2010 there wasn't many options available, but searching now there's a decent number of free offerings that can provide the audio for you.
However in October 2020 some kind folks shared a Hackaday post about a new set of trails that appear to have a massive positive effect.
It uses "bimodal neuromodulation treatment" to affect neuroplasticity. In simpler terms this means using two separate stimuli (hearing and a nerve on the tongue) to reprogram the brain's unhelpful sound effects.
The system is called The Lenire System.
Last week something, like not being able to sleep because my tinnitus was keeping me up, I went browsing to see how, if possible, I could get hold of this system, and a few minutes later I had booked myself into an appointment.
Unsurprisingly I had one of the best nights sleep that evening (according to my Oura ring).
My first appointment and what to expect
This morning I had my first appointment, though actually an initial introduction than anything else. I may not be eligible for the Lenire System depending on the profile of my tinnitus, but it's a first step in a journey that has been a losing battle against my tinnitus.
My next steps are to get a hearing test at 250Hz, 500Hz, 1kHz, 2kHz, 3kHz, 4kHz, 6kHz, 8kHz (all frequencies mandatory) and an examination of the ear (Otoscopy) - this last part will test whether my tinnitus is subjective or objective (i.e. in my head or in my ears).
After the introduction call ended a wave of emotion came over me. I felt like I was holding back and emotion during the call but it definitely all came in after.
I know why I felt the way I did, it's the potential to managing my tinnitus in some way, if any way, rather than letting it dominate my brain the way it has done for 20 years.
I'll try to continue to share my story, if only to unload my own brain into this corner of the web that I occupy.