Neuromod: I have had tinnitus now for... - British Tinnitus ...

British Tinnitus Association
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Neuromod

KingsHea
KingsHea
16 Replies

I have had tinnitus now for nearly 2 years. At the start I joined this forum and searched for treatment. At tne time many said that soon the new treatment from Ireland would be available. It had a different name then....maybe 'Mute Button' but now we know it as Neuromod. My question is simple: 'Has anyboxy on this forum had a beneficial impact from Neuromod?' The success rates reported in their trial was quite high so there should be several of you now with good reports. Please let us know. Thanks.

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Ingrid-p

Hi read the posts by ade-the-pade. Don’t think it has been very successful for him, but he hasn’t posted about it for a few days now.

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KingsHea
KingsHea
in reply to Ingrid-p

Thanks Ingrid, I think Ade had to take a rest because the treatment accented his hearing sensitivity, so at the moment that is probably a 'No' vote.

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Ruud1boy

Last I heard, Ade had experienced a significant worsening - 'disimprovement' in Neuromod's newspeak - of his tinnitus as a result of using the device.

I've been using it for 4mths now and I can't say that it's had any noticeable effect on my T either way. I have had a few isolated good days, but I did occasionally get those before the treatment as well. There was one high point, when my T was barely noticeable for a day - that was my tinnitus 'personal best' since I started struggling with it in late 2016, but whether that was due to the treatment, I couldn't honestly say.

The 'tonguetip' that's used to deliver the electrical stimulation is supposed to last 6mths before it needs replacing, at a cost of €250. My current thinking is that I'm going to carry on with the treatment protocol until I've done 12mths, so I'll need to replace the tonguetip in the next couple of months. If I've not seen any positive improvement by then, I think it'll be time to accept that it ain't gonna happen for me.

If it worked, I'd be quite happy to pay another €250 every 6mths, but if it doesn't there's obviously no point continually throwing more money at it.

The only other forum regular that's using the device AFAIK is @Scarlett2013.

There are some very lengthy threads re this device on Tinnitus Talk and they are collating their own dataset on user experiences. ATM the rough numbers are indicating that about 30% of users are experiencing some improvement, about 50-60% are seeing no change and about 10% have seen their T get worse. There's only 1 individual that I know of who's had the sort of dramatic improvement that we were all hoping for - he's been reporting a (subjective) reduction of his tinnitus of around 90%.

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KingsHea
KingsHea
in reply to Ruud1boy

Thanks so much for this. I will visit the other forum and have a look. I guess I suspected it would not be a cure but a managing treatment. I wish you success. I am frankly scared however of making my T. worse . I am willing to risk a spike so long as it is temporary but a permanent worsening would drive me nuts. Good luck and I hope we read of real improvement for you in the future.

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Scarlett2013

Hi

I am just over halfway through my treatment. In the first few weeks I had increased volume at times especially during the night . I am very cautious about reporting any improvement as we know that t changes all the time. I am however cautiously optimistic that it is helping me. I seem to be having more good days than I was and the noise itself is more muffled now, although as I said I am not claiming any success at the moment. I do t know if this helps you but I am glad I am trying it, and will continue using it in the hope that it continues to improve, even if it is only slightly . Anything is better than nothing.

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ade-the-pade

Hello Ruud1boy. Well done for sticking at it. Very time consuming. It makes you wonder where they got all there positive data from. They quoted me 60% improvement but I am a bit disbelieving now. I hope that you turn the corner and get an early Christmas present.

All the best.

Ade

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Heleneti

Is this a vagus nerve stimulator?

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KingsHea
KingsHea
in reply to Heleneti

Yes via the tongue

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Ruud1boy
Ruud1boy
in reply to KingsHea

For the sake of accuracy, this doesn't involve the vagus nerve. Their tonguetip stimulates the trigeminal nerve.

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ade-the-pade

Folks. My T and H has not returned to the pre Neuromod level. It caused a spike and it stayed there. They adjusted the settings but it did not change anything. I am still taking a brake from the whole thing.

To be honest, If it went up another level I would be at breaking point.

I am not hearing of too many success stories nor are they giving me any guarantees that it will reduce. Too risky for me at this point in time.

It is a real shame as I had real hope that they were onto something.

The science seemed believable and more than just a placebo effect. Would the people have got better anyway way? Was it the sitting down and relaxing for 60 mins a day that was doing the healing? Anyway, still waiting for the big cure that works for us all.

Happy Christmas everyone.

Ade

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Ingrid-p

Hi Ade

I’m so sorry that it hasn’t helped you, in fact made it worse. I think all us regulars were hoping that this was going to be the “cure”.

Mine is bad at the moment, but it does seem to settle or habituation takes place really not sure. Takes me months tho and then there’s no guarantee it won’t get worse again as it has numerous times in the past. But I relish the good times.

I’m was a bit sceptical about Neuromod as the BTA never really got behind it. I guess we just have to wait for that day when a positive treatment is found. Surely it can’t be much longer.

Merry Christmas to you as well 🎅🏻🎄🎉

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Ruud1boy
Ruud1boy
in reply to Ingrid-p

I think the BTA never really 'getting behind it' was due to the fact that Neuromod still haven't publicly released their trial data for independent verification. They've been promising that this is in the pipeline for months now, but the timeframe for release keeps getting put back.

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Ingrid-p
Ingrid-p
in reply to Ruud1boy

Hi this makes me think that perhaps they should have waited and not given false hope to people.

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ade-the-pade

Thank you Ingrid. I am wishing I had never heard of the thing!!! On one level it was good to try it but we need to be sure that it actually works. It would be good that someone like the BTA gets behind it and signs it off as a registered "cure" or a beneficial aid. I am struggling to read or hear from someone who has reported an actual benefit.

We live in hope!!

Ade

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KingsHea

Ade I am so sorry and I really hope things calm down for you as you take a break. The fact that this has happened to you does indicate to me that Neuromod are fiddling with the right things under the hood it is just that they have not got the technique right or maybe even safe yet. They withdrew the treatment 4 years ago and maybe for the risk factor. I know that I tried to duplicate the other vagus nerve treatment that Shure et al talk about in the States. I used a TENS unit and at one point it was like having a stab wound in my neck so I stopped. So my best wishes for your T. calming down.

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ade-the-pade

The brain is a funny old thing to tinker with. One slip can be disastrous!!! I don't like the sound of a stab wound in the neck. Doesn't sound like a good cure for T. Good luck for your search for peace and quiet.

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