Hello all,
I've had a break from posting on this forum, initially from a spike that sent me into a bit of a breakdown. I also don't think it's healthy for me to post here longer term.
I've been using Lenire and would like to share my experiences in the first 12 weeks.
Background
My tinnitus started after an acoustic trauma during a very stressful work period in December 2018, so I had suffered from tinnitus for about 8 months prior to starting Lenire. I'm now 39 and otherwise healthy and fit. My tinnitus is bilateral, one ear worse than the other.
Prior to visiting Neuromod I'd seen my GP, a patronising ENT, whose advice was a leaflet from 2009 (nothing new in the last 10 years, apparently!) and four audiologists (one public, four private). They all offered different insights, most of them said I had a notch at 4kHz, although the extent of that is not 100% determined (we'll get to that in a bit). One said I had a retracted eardrum in my bad ear, so I used decongestants to help with this. One offered me hearing aids with masking, which I had some benefit from initially, as wearing them would let external sounds drown out the tinnitus.
I've been taking antidepressants (Mirtazapine, 30mg) and occasionally sleeping medicine (Zopiclone, 7.5mg). I've also been seeing a psychologist.
First visit
I flew out to Dublin for my first appointment, with the view that I'd fly back the same day. In case any of you are considering this, here's some travel tips:
1) You are going to Hermitage Medical Clinic, a private hospital on the outskirts of Dublin. Neuromod themselves have offices in the tech centre of Dublin, but that is not where you're going. Hermitage Medical Clinic is in an area called Lucan. You won't see any of actual Dublin on the way there. Therefore, I would suggest getting a taxi, which takes about 30-40 minutes and costs about €35. There's a courtesy telephone on the right-hand side of the main entrance to get a taxi back.
2) Neuromod is located on the second floor, Suite 38. When you get into the building, walk to the right of reception and get the lift to the 2nd floor.
Ah yes, awful carpet. This offends me on so many levels.
3) My four meetings with Neuromod were on a Tuesday or Friday. If you are day tripping to Dublin, I would recommend you get as many Tuesday meetings as possible. Friday is a busy travel day, meaning you will have much less leeway traveling to and from the Hermitage Medical Clinic. One of the taxi drivers told me there are two big flights coming in from JFK about mid-day on a Friday and, if you're unlucky, you could be leaving the airport at the same time as them and be stuck in bumper to bumper traffic. I actually missed my final flight due to this traffic and had to stay overnight in a hotel near the airport – d'oh!
Once in the suite, I filled in a THI questionnaire and met with an audiologist, who was shadowed by a colleague from Germany. We discussed my tinnitus history, as expected. They had a look at my ears and said I had some wax buildup, but nothing to require sending me away. I would have been gutted if I had been turned away on this account, so my suggestion to anyone considering an international trip is that you get a local audiologist to look at your ears shortly before you go.
I was also asked about any therapies or drugs I was undergoing. I explained that I was seeing a psychologist and using Mirtazapine (30mg). I know I'd answered this in the questionnaire before this trip, so I was not anticipating a rejection on this basis. I also made it clear that I want to get off this drug ASAP, but that doctors typically will get patients to taper off going into summer, not winter, so I will likely be on this until spring 2020.
We then did a hearing test. This would be my sixth since getting tinnitus, but only my second in an actual soundproof booth. The other four tests, I was asked to turn around and face away from the audiologist or ENT. I always felt this was kind of BS. I get that they can get decent reads outside of a booth, but is that going to be accurate enough to identify the extent of a hearing loss?
To my surprise, I didn't show a dip beyond the "normal" hearing threshold at 4kHz. I do have some at 16kHz, but that is in line with my age. Considering the NHS audiologist told me I needed to wear hearing aids for the rest of my life, I was happy to hear this, though I'm well aware of the problems with a PTA test to gauge hearing loss.
I'd been wearing Widex hearing aids with masking sounds for 6 months at this point, which I had to constantly turn off due the noise being too much, especially when exposed to sudden increases, like someone yelling on their phone. I was in a restaurant once and a gaggle of obnoxious women were screaming during someone's 40th birthday celebration and I had to take the hearing aids out. I have since stopped wearing and returned the hearing aids.
I was then sent to meet the Lenire technician and explained the various payment options. I was told that I would need to come back in about 4 weeks to pick up the device, should I decide to go through with it.
To be honest, this annoyed me a bit. ln future, I think it'd be good to be able to buy the device on initial visit, having to fly back and forth is a bit of a hassle. I know it's fitted to your hearing profile, but I don't think it requires a lot of changes for each individual. Remember, adjustments to your device on subsequent visits are done on the spot during a 1 hour visit.
Second visit
I flew out again a few weeks later to pick up the device. This time I filled in a THI questionnaire and one about my sleep. I then met a different audiologist, and we did the hearing test again. Same result. I even got a printout. I think it's quite depressing that the NHS audiologist told me to wear hearing aids for the rest of my life without showing me an audiogram that would have potentially shown evidence to the contrary. Hearing aids only help for hearing loss up to 6kHz, so it's little wonder I didn't get much benefit.
I then met with the technician and she showed me how to use the device. To be honest, I thought this was a bit overkill. It's pretty simple to use. I guess they have to have standardised instructions so that some of the fogies who don't know how to use a smartphone can use this correctly, but to me the instructions were a bit patronising. I also used the device for about 5 minutes.
When given the device, I was presented with a lot of packaging. I got the box for the headphones, the outer packaging for the Lenire device and it was presented in a gift bag. As I was travelling with Ryan Air, I didn't want to pay more for taking an extra bag. Luckily, there's a recycling bin on the 1st floor near the lift. Most of the packaging ended up in there and never left the building.
Seriously, look at all this waste.
The treatment itself is pretty boring. My recording has the sound of rain, wind, a piano doing scales and something like an electric chirp tremolo picking the same notes as the piano. I even figured out how to play the music on my guitar.
I never learned how to read sheet music, but for those of you who are familiar with guitar tabs, it's basically this:
e e e e e e e e q e e e e q e e e e q
e|----------------------|-----------------|--------------|
B|----------------------|-----------------|--------------|
G|---------3-----4-3----|-3------4-3---3--|--------------|
D|-----3-4----6---------|-----6-----------|-6--4--3----3-|
A|---6----------------6-|-------------6---|----------4---|
E|----------------------|-----------------|--------------|
e e e e e e e e q e e e e q e e e e q
e|----------------------|-----------------|--------------|
B|----------------------|-----------------|--------------|
G|---------3--6--4-3----|-3---6--4-3---3--|--------------|
D|-----3-4--------------|-----------------|-6--4--3----3-|
A|---6----------------6-|-------------6---|----------4---|
E|----------------------|-----------------|--------------|
It sounds like the most depressing video game music you can think of. I liken it to funeral music in a Final Fantasy game.
The tongue tip definitely feels like popping candy. I found my tongue a bit sore the first few times I used it, but I guess the tongue got used to it.
Post-treatment, I do feel an increase in tinnitus, but it's temporary and fades within 30-90 minutes. It's hard for me to articulate how this increase manifests, I would say my tinnitus becomes more like a ring and is louder.
I was told that more patients than not perceive an increase in tinnitus during the initial period of their treatment, I am happy to say I did not experience an upwards trend.
In terms of fitting the treatments in, I've found lunchtime to be the best time to do them. In the morning, I'm usually busy getting ready for work and drinking coffee, both aren't great for using Lenire. I don't really want to get up earlier just to do the treatment, either, as I'm usually up very early for work anyway.
I did try doing treatments in the evening, however, I found that it left too short of a window between the post-treatment spike and the need to sleep. So lately, I've just been doing the treatments at work. I work for a big bank and the building I work in is huge with an atrium. I just sit down by myself and use Lenire while I work on my laptop immediately after lunch. Nobody's asked what the tongue tip is (yet), but if they asked, I would just tell them. I know some have said they'd be too shy to use this in public, but really... why? Most people are too busy staring at their phones to care what you're doing, and even if they did, what's the big deal? It's not like this is something obscene. You've got a USB connected to your mouth. Whooptie-doo. This also allows me to do something a bit mundane (work) while doing the treatments. Because believe me, the treatments are BORING.
The first 6 weeks saw some improvement in my tinnitus. I wouldn't say I thought it was getting quieter, but it was more stable. My tinnitus has fluctuated a lot since the onset, and the troubling thing has really been the undulating nature of it. At times, it's sounded like an angry wind, at other times like an alarm going off. I'm a firm believer that pitch and tonality matter as much as volume for tinnitus distress, and I have to say that the tinnitus sound has been more manageable with a steadier, more maskable sound. Of course, longer term sufferers may point out that my tinnitus has been recent and that the improvement could be due to natural healing.
In the interest of fairness, I think Neuromod has had some positive impact, but prior to using Neuromod, I had seen some improvement. Part of me would like to better understand how much was Neuromod and how much was natural, but part of me also doesn't care. An easier time with tinnitus is always good.
Third visit
I was cutting times a bit fine with my flight out to Dublin the third time and I ended up being 15 minutes late for my appointment. D'oh! They still saw me, which was nice of them.
As usual, I first met with the audiologist, who asked how I was getting on with the treatment and then we did a masking test. As I suspected, my tinnitus volume had not decreased, but the tonality and pitch definitely had. Sitting in the soundproof booth with the headphones on, it was clear the signal was more stable. I then met with the technician, who had adjusted my device for me while I was with the audiologist. The sounds were pretty much the same as before, maybe with a smidge more bass in the background. I went from PS-1 to PS-4 (I think that's what the treatment protocols are called). I asked how long I should expect to use this device after my 12 weeks were over and was told that patients can continue to use it long term and visit annually for a checkup.
Being honest, I really do not like flying and will probably hold off on flying back after my final 12 week visit, unless there's some sort of urgent need, like a spike or a technological breakthrough from Lenire. I do think I could use this for a longer period and then see how things evolve. About a year seems like a good time period to categorically say whether I think this treatment has worked for me or not. I was also informed that some patients who live far away may not find it practical to fly to Dublin 4x in 3 months, and for those patients, staying with the initial set of treatment sounds may be an option.
Fourth visit
Between my third and fourth visit, I had my ears cleaned, as the wax buildup was noticeably impacting my hearing. I don't think this impacted my tinnitus, but I do think it helped my hearing. I can hear music more clearly and pick out instruments a bit better.
For my fourth visit, I again filled in a THI questionnaire and one about my sleep. I think the biggest improvement for me in the last 12 weeks has been in sleep quality. I sleep with earplugs and the tinnitus is much more manageable when I need to catch some shut eye. I often wake up with mild tinnitus these days, though my tinnitus has always been milder upon waking.
I met with a third audiologist this time around, and we did a minimum masking level test. Between my third and fourth visit, my tinnitus had actually increased by 2 dB. The device technician then adjusted my treatment plan back to the first one.
Conclusion
My tinnitus has improved while using Lenire, but it was already improving by the time I started the treatment. After the initial onset in December 2018, my tinnitus got worse and worse for the first 4 months, after which I saw a general, though not linear, improvement. In fact, I thought about not going to my initial appointment, because I wanted to see how much my condition could improve on its own. I quickly reconsidered, when I realised I may not have the chance to go again as easily. I started Lenire about 8 months in, so relatively early on compared to long term sufferers.
My tinnitus has improved more in terms of pitch and tone than actual volume, which is good. I remember in March, I was sitting in a quiet meeting room with colleagues (about 30-40 dB) and my tinnitus was undulating like an ambulance siren (baa-boo, baa-boo) and thinking "I can't believe I'm the only person in the room that can hear this, I'm going to go insane!". Thankfully, that level of noise is not one I experience regularly anymore.
Would I recommend you try Lenire? It depends.
First, can you get to and from Dublin relatively easily? For me, Dublin is a 50 minute plane trip away. I don't know that I would want to travel across the Atlantic to do this treatment. If you live further away, I would consider waiting until the system is available locally.
Second, do you have realistic expectations of the treatment? While many of us want this treatment greatly reduce our suffering, going into this expecting a full remission of your tinnitus is likely a mistake. Most of the users I've come across have had some improvement, like me, but nothing miraculous. You should accept this if you are interested in Lenire.
Third, do you have the money for the treatment? €2,500 is not a fortune, but it's not peanuts, either. The average salary in the UK is only £28k, so that'd be 7.6% of your gross salary. Ouch.
If you have further questions about Lenire, please ask.
Wishing you a quiet future.
- D
Member
A good omen.
. Nevertheless she said even with this one I have actually very good hearing and it might be caused by flying and is typical that our hearing threshold may wary day by day. The truth is maybe somewhere in between as I was stressed by this trip, starting with waking up to catch the plane in the middle of the night and much more on that day.
