I've lurked around these forums for a few weeks trying to take in what and where tinnitus treatment is at today as opposed to where it was at when I was first diagnosed back in 1991. There seems to be some very intelligent and well-versed people here with all sorts of knowledge in clinical trials, statistics, medicine etc etc, and that's brilliant for the community at large. Personally I have none of these particular skills and so reading your posts is beneficial to me when taking my layman's approach to assessing the potential in terms of gaining some long lasting relief to my own tinnitus, especially as it can now be quite intrusive even during the daytime.
I was initially very excited about Lenire. Not having had to pay much attention to tinnitus treatment for many years it was encouraging to find there is now some kind of device on the market (as opposed to the masking and, "You'll just have to learn to deal with it" approach back in 1991). That said - and I don't want to pour cold water on the thread - I'm quickly losing faith.
I understand there was some documentation published (a chart) that demonstrated general relief in symptoms over a period of time using Lenire. That chart alone really tweaked my interest. But I agree with
@GlennS that Neuromod's own testimonials now seem rather lackluster and don't appear to support the narrative the chart laid out. Furthermore, accounts like Clare B's, a person who had been suffering with tinnitus for less than two years, need to be considered in context. My own tinnitus cleared up the first time round within two years of diagnosis
and just after the period when I'd started using masking on a daily basis. I think it's fair to say that around that time an ENT consultant may have anecdotally concluded that it was the masking device rather than a spontaneous event that may have contributed to the relief. But surely if that case was true we'd be seeing stacks more positive outcomes? Even Clare B stated that the Lenire trial didn't work for everyone:
"I did happen to speak to some older participants in the trial and they did not have the same improvement. So I guess it works better for some than others, depending on your tinnitus and maybe not so much if you have hearing loss."
I think the tinnitus industry needs to do a lot more. Unfortunately, the current commercial state of bimodal stimulation seems to be putting those of us with symptoms between a rock and a hard place. On the one hand the Shore device benefits from years and years of thorough (and paid for) research and testing, which of course should fill potential patients with confidence, however, what's the point of defining a finite methodology if it just sits on the test bench forever and a day?
Then of course we have Lenire; on the market now but raising justifiable concerns because of the many matters being discussed here. Even Neuromod's website currently appears to be a little unclear stating that:
Neuromod's bi-modal neuromodulation technology for the treatment of chronic tinnitus is currently undergoing large-scale trials across a number of European clinical sites under the guidance and supervision of our Science Advisory Board. OK, sounds promising, but does that mean trials are ongoing and therefore patients are paying to participate in device development? Or has Lenire reached a de facto standard and the rest is tweaking? I think Neuromod could and should be much clearer on this.
I want to stay positive. On a personal note I can just about deal with my tinnitus although if it gets any more intrusive I do think that could be a problem. Props to Lenire for commercialising a device but from what I'm gleaning here on Tinnitus Talk I believe there's at least now a good chance that many people are going to feel let down. Personally I won't be abrogating my own responsibility for coping strategies etc going forward because I do believe most of us can build our own coping strategies and lead normal lives. More importantly though I think it's healthier mentally going forward to place faith and responsibility in oneself rather than a medical magic bullet that, at least for the near 30 years tinnitus has been a part of my life, just hasn't come.
For those of you using Lenire or about to I hope you get relief. And at the end of the day whether that relief was due to the device or spontaneous event doesn't really matter. Relief is relief!
) points that's a whopping decrease of about 60%. But only 20% for someone at 100. What that means literally in terms of real life effects on our symptoms is anyone's guess. Even Neuromod don't know this I suspect.
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