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Me & Tinnitus: entry 3 [blog]

Written by Remy Sharp / Original link on Aug. 2, 2021

The day after my last entry on my tinnitus I was approved, or rather I was in an acceptable range of hearing, to qualify for the Lenire treatment. The equipment isn't cheap but I've always justified the money spent on improving my health or mental health is always money worth spending. So I paid up the equipment was configured and shipped from Ireland on the Friday and I had my "fitting" appointment on the Wednesday. Then I was off.

I decided I also wanted to record some video to get my real-time thoughts captured and also to show the equipment that I was using, so the bulk of this post is a video (via YouTube with cookies disabled) which I'll share shortly in this post.

Quick notes on the equipment and fitting

The cost that I paid I imagine covers a number of items and doesn't come cheaply. One of my associated interests in this particular equipment is whether it can be, or rather some forked version, could be available as some form of open source. So I'm going include a follow up post that's a bit of a hardware teardown that looks at the hardware and the software - so far as I can understand it.

Otherwise, what I'm really paying for is both the hardware but also clinical support over the 12 week treatment period.

In terms of hardware/device, there's a pair of headphones, which are actually a standard commercial bluetooth headphones, the main "device" which automatically connect to the headphones and that drive the "tongue tip" stimulation.

The "fitting" process was a video call with the clinic where they walked me through using the equipment, answered any questions I had (like battery life - 1 week), and had me run a 5 minute test with them - where I sat with the sounds and tongue tip whilst our video call was paused and I could get an initial feel of how things go.

A video post on the experience

The video includes me showing the device and how it's used, a very tiny snippet of the sound (which I'll share more in a follow up post), and some of my off-the-cuff thoughts (it also includes my nearly-post-pandemic-didnt-go-to-the-gym round face 😬!).

Some thoughts after a week of usage

I've been using the Lenire twice daily (in 30 minute blocks) for a little over a week now. I can say with certainty that my tinnitus hasn't eased up, which is fine, it's still early days.

During the fitting appointment it was made clear to me, multiple times, that many other patients on the treatment experienced an increase in their tinnitus - but they did reassure me that for everyone it had returned either to baseline levels or, obviously ideally, to an improved status. For me, my tinnitus has definitely perked up.

The last 3 days, unrelentingly, my tinnitus has been on full whack. I do notice the the sounds from the audio either stimulate or agitate my tinnitus and I keep coming out of the treatment session with my tinnitus on at full levels. I've also noticed overnight, when I wake up in the night, my tinnitus is still raging - so that's been a little tricky to deal with over the last few days as it's not really rested up.

I am also aware, as I've said in previous posts, that the more I focus on my tinnitus, the more I'll notice it, so this new awareness of how loud the ringing is, is not a surprise to me - though definitely unpleasant.

The sounds being played are definitely soothing for my brain and it's certainly hard not to want to sleep to the sounds - though I'm not supposed to during the treatment, and in fact they need me to be in a calm, positive environment, such as sitting without screens (i.e. don't work at the same time) or whilst reading a book.

The tongue tip is fine and I've let the kids try it out too - they thought it was definitely interesting.

The headphones supplied, frustratingly, aren't the best quality. Apparently they had a commercial award in 2014, but are now no longer available to buy. The main downsides, certainly compared to the decent pair I own and use for my own music, is that there's no noise cancellation (so when I used them as a passenger in a car, I had to amp up the volume). There is a very bright blinking LED on the side when in use - so not ideal for bedtime use (though I put some gaffer tape over it). The low battery warning is an extremely loud and obnoxious bleep that keeps going rather too often for something used for a calm treatment experience.

Worse of all, you can hear the sounds I'm playing from the outside. Specifically I've used the treatment before going to sleep in bed, and Julie who shares the bed with me can hear the sounds whilst they're reading their book. Not the best shared experience!

I'm going to follow up with a bit of a technical post about what's inside the Lenire, but I'll continue my diary of this experience in the hope it can help anyone else and to help me clear out the cobwebs in my head.

Originally published on Remy Sharp's b:log

remysharp

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