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I have loudness and pain hyperacusis. I think I took Retigabine for max two months, and took quite a high dose at the end. During the time taking it, I already started seeing some strange “blips” in my vision. But the whole floater/visual snow thingy started a month or two after stopping taking...

Your post triggered me. I don't know if I posted it at the time, but I also took Retigabine for a while. I can well remember the first night I took it. I woke up in the night, and I really had complete silence. I woke up my girlfriend and yelled like a maniac, it works, it works, and even went...

Thanks @brokensoul!

@MRItechssuck I signed up around September. I’ve got an invitation for April. Really doubting if I must go or wait. I need some more confidence that the treatment is really working for a large number of people, but at the moment it doesn’t look good so I’m really curious about the outcome of...

I know you already said it somewhere but when can we expect the results of your study? I’m asking because today I received an e-mail from Neuromod with an invitation. Really in doubt if I will go. Thanks!

I said this before, but I was told they would like to offer the treatment sometime in 2020. I’m Dutch speaking and the email conversation was in Dutch, so no translation errors or something like that. I wouldn’t set your hopes up too high for a starting date of selling in January.

Brai3n clinic told me they would like to offer the treatment sometime in 2020. My interpretation of the e-mail is that they are talking with Neuromod but there is nothing definitive yet.

Good work! I really appreciate it. Still in doubt if I should apply to the clinic in Dublin or wait for clinics closer to home (The Netherlands). I don't want to fill up an appointment slot if I'm going to cancel it anyway.

Lol, I see the doctors are joining this thread. :D

Very niche? You know 1 in 10 people experience chronic tinnitus, and if I remember correctly 1 in 100 suffers from it. I think you underestimate how big the market is.

@Kam75 I think what John says is true for most tinnitus sufferers. I had a 3 month old baby when my tinnitus started. I was suicidal and thought my life ended. The tinnitus was really driving me crazy. For me it was a slow healing and habitation process, it took almost two years. Now, almost 5...

Could someone with the device on hand post a sound clip of the sounds being played by the device? Really curious how it sounds.

@drcross, thanks for the write-up!

@Tomas80 No official announcements or dates of availability in other clinics yet.

No, please don't think so. You are absolutely doing the right thing! The money is nothing (it's just money) and the chance for an improvement is real.

I've also sent them an e-mail and in their reply to me they didn't specifically say it will be available in January 2020. To me they said they are aiming to offer Lenire alongside their other treatments in 2020.

@Mentos this is some good news. I was doubting about mailing them, glad you did! Thanks for sharing!

I think they also learned that switching from timing pattern after a few weeks is boosting the results. I hope they continue finding these improvements so maybe they can completely destroy tinnitus of people who respond to this treatment.

@ruud1boy thanks for answering. :) Unfortunately Regensburg is an eight hour drive for me, Dublin is closer (I'm from the Netherlands). Somewhere in this long thread I saw someone mentioning a clinic in Belgium opening around September. Fingers crossed then (disclaimer: this is all...

Any news about clinics in mainland Europe offering the Lenire treatment? I'm hesitating signing up for the clinic in Dublin. I don't want to make an appointment if later this year the treatment becomes available somewhere closer to me.

Oh man, I really really really hope they still sell it for around €2500. I would get it immediately, €4000 is a different story. Can't wait for some news.

Wow, I really hope @annV is wrong about the price. I have the money but I don't like gambling, and a €4000,- gamble is too much for me. Such a high price really pisses me off.

Everything seems very promising. The only thing I'm afraid for is that they only tested the device on people who have had tinnitus less than 5 years. Time since tinnitus onset is a very important parameter in my opinion and they didn't include it. They measured the improvement against THI and...

I really wish they announce a release date finally. I didn't check Tinnitus Talk for almost two years or so but now I'm checking daily hoping for a release date. Not that I'm that hopeless, I've learned to live with my tinnitus, but some silence would be welcome.

I don't think it wouldn't be a problem (not that I'm a scientist). I experience my tinnitus as a brain related thing. At the time of onset it was a faint small tone in my right ear. In the following period the tone changed and now it's more like my brain is hissing ultra high tones. My brain is...

It's been a while since I last logged in on Tinnitus Talk. When I got my tinnitus 4 years ago I thought my life ended but I'm glad I can say that I can manage my tinnitus and hyperacusis and live a happy live again despite the tinnitus some days screaming on top of all the sounds. However, I'm...

Thanks for your reassuring replies. I'm still worried my eye problems have something to do with trobalt. Since I’ve read about the vitelliform maculopathy I can't get it out of my head. On the other side, I work in IT and have been very busy, stressed and make long days often so maybe my...

I have taken trobalt seven months ago for a two month period and stopped because of the side effects. The last two weeks I have strange eye problems. They're hard to describe but I experience some visual snow, find it hard to focus and see spots and flashes. The doctor has done a quick eye exam...

Progress Report Progress Report Date: Oct 21, 2015 Current Retigabine Dosage: 150mg 3 times day Current Side Effects: My planning was on taking 3x 250mg a day for a month. Last week I was supposed to be on that dosage but the side effects were too severe for me. What bothered and scared me...

Wow, I almost can't believe the trial is stopping because the drug isn't working, however everything points in this direction. At the moment I am on Trobalt and a higher dose really silences my T. The first time on a higher dose of Trobalt I was 100% sure AUT00063 also was going to work because...

I am on Trobalt for a couple of weeks now. Started with 3x50 mg. Next week 3x100, and so on. Did'nt experience very much of a difference before 200mg. I don't think it is wise to taper up very quickly but i'm not an expert.

Progress Report Progress Report Date: Oct 12, 2015 Current Retigabine Dosage: raised to 3x 250 mg a day last weekend Current Side Effects: After taking a dose the effects last for 6 hours, same for the side effects. Severe side effects with these doses. Problems with speaking and typing...

Progress Report Progress Report Date: Oct 5, 2015 Current Retigabine Dosage: 3x 200mg a day Current Side Effects: Last weekend I upped my dose from 3x 150mg to 3x200mg. This morning I had some more serious side effects. I was at work and feeling stoned, speaking and typing slow. Really...

Progress Report Progress Report Date: Sep 28, 2015 Current Retigabine Dosage: 3x 150mg a day Current Side Effects: none Current Tinnitus Severity: 5 out of 10 Changes in Tinnitus: Last week I was on a 3x 100mg dose. Had some really silent days and silent moments but also some spikey...

Progress Report Progress Report Date: Sep 21, 2015 Current Retigabine Dosage: 300mg (3x 100 each day) Current Side Effects: Sometimes a little bit tired and light headaches but I also got a cold last week so maybe the symptoms were from te cold. No real side effects yesterday when I...

Progress Report Progress Report Date: Sep 15, 2015 Current Retigabine Dosage: 150mg per day Current Side Effects: none Current Tinnitus Severity: 4 out of 10 Changes in Tinnitus: I'm starting today with my Trobalt trial. I've measured my T levels two weeks before I started multiple...

New User Information Gender: Male Age: 32 How Long Have You Suffered From Tinnitus? (Date of Onset): Jan 7, 2015 How Did You Get Tinnitus?: Acoustic Trauma Explain How You Got Tinnitus: Probably fireworks. I was standing in the hallway when a big firecracker went off in front of it...

I've read through some threads about keppra and maybe I want to try it. I have T since the second week of January (probably because of fireworks). A week later I also got H. It sounds like the dynamic range of my ears is reduced a lot. Some days it seems that all sounds come in at the same...