Neuromod - 12week update.: Hello Folks... - British Tinnitus ...

British Tinnitus Association

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Neuromod - 12week update.

ade-the-pade
ade-the-pade

Hello Folks. As promised, here is my feedback on my 12 weeks on using the device. You may recall that after 4 weeks I reported headaches, nausea and a major spike in my T and Hyperacusis. They suggested that I try to increase the usage up to the suggested 60 mins a day. I had been doing 30 mins. 60 mins a day sent my T through the roof. My Hyperacusis became unbearable and I could not eat for wanting to vomit. I had a break from the device.

The clinic were very good and gave me an immediate appointment. They reprogramed the device. It now plays a series of beeps and they suggest that I go start at 15 mins a day. I did this for a week but my T and H have not settled. The nausea remains. They suggest that I take a break. In the meantime, this has expose my vulnerability and really knocked me back. I am now having to regroup emotionally and fight the good fight against raging T hoping that it goes back to pre Neuromod levels. Feeling a bit battle weary at this time. (We have all been there)

The clinic says that my reaction is very unusual. I suppose tampering with the wiring of the brain carries risks.

Nausea is linked with T but I have a strong belief that it is the Neuromod that has set this off. My head a times feels like it is being squeezed in a vice. I never had this before. All in all, my belief in this is beginning to slip.

Ruudboy and Scarlett on this forum are trying this device and I would like to hear from "real" people with a positive experience.

It is hard to say "I don't want to put people off", Reading my reports will probably do this. However, there must be people out there who have benefited from this treatment. Were they mild sufferers? Would they have got better anyway? Was it the placebo effect?.

Answers on a post card.

Bad joke - "Why did the audiologist cross the road?"

To tell the tinnitus sufferer just to ignore it

25 Replies
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Yay Ade, I'm really sorry to learn that the neuromod treatment doesn't seem to be helping you. As an after thought re the nausea I was wondering if your vagus nerve which travels from the brain down to the lower intestine has possibly been overstimulated hence the nausea, probably not but I always think outside the box. I do hope everything settles down for you soon.

Best Wishes

Xene

ade-the-pade
ade-the-pade in reply to Xene

Hi Xene. Thanks for reply. I had to google that one. It could be that my stress or anxiety aggravates the nerve or vice versa. Either way my Gp is reluctant to give me anti sickness medication as he wants to give it time to settle on its on.

I don't think that i will be a poster boy for neuromod at the moment.

Wishing you peace and quiet.

Ade

I’m so sorry you’re having such a bad experience with the Lenire . I feel your frustration , even though I haven’t tried it , I’m gutted for you !

I was hoping that your 60 minutes increase, would have improved things . .

I really don’t know what to say Ade , just hang in there and I’m sure your T will reduce back to its pre treatment level .

Please take care .

Here’s to silence one day !

All the best

Zoë

ade-the-pade
ade-the-pade in reply to WoodyT

Thank you Zoe. i need the positivity at this time.

Ade

Oh dear Ade I feel your disappointment and weariness.

Thanks for the joke 😀and for being a pioneer with this device!!

Praying for relief for us all one day😇

Thank you very much.

Ade

Thanks for update I really appreciate what you are doing, fingers x that this does settle and improve for you.

Brother, I am so upset that this exercise hasn't gone well for you. I can't imagine how difficult it must be to have your hopes raised, shell out a large amount of money and then be in a worse position that when you started.

As if having tinnitus in the first place isn't bad enough, the 'treatment' is not much short of Russian roulette.

I've seen you popping up on Tinnitus Talk, but I don't know if you've been following the discussion on there. For the benefit of anyone who hasn't, there hasn't been anyone who's currently using the device reporting any dramatic improvements yet - there is one forum user on there who's reporting similar worsening of their T. To the extent that he's invited offers from anyone to buy his device from him.

I wish there was anything I, or anyone else, could do for you right now - for any of us really. It's a ridiculous notion, but I keep coming back to the thought 'how can this be a thing?' How can so many people be forced to endure such suffering and there's jack all anyone can do about it.

There's a lot of suffering in the world, but mostly there's someone, somewhere doing something to alleviate that suffering. We just get told 'aah, it's only a noise'. Sorry, I'm ranting 'cos I'm angry about this.

Are you as sure as you can be that it's the treatment that's triggered your deterioration Ade? Did you have any issues with the flights there & back?

Sending you love and deep hope that things improve for you.Hang on in there.x

Hello Ruudboy. I had no problem with the flights. I usually sleep at it is an early start.

You are quite right to have a rant. This is a bloody awful condition that ruins lives. Unless you have it you can't really understand how it impacts your life.

I can see why the guy wants to sell his device. I could have spent the money on my kids. On the other hand, i would have always been wondering if it would have worked or not. Now I know.

I cannot be sure that that the device triggered my T and H but it was the only significant change in my circumstances. When I went to 60 minutes it went through the roof. I am fairly satisfied that there is a link.

Feeling a bit raw at the moment so. I use the term Regrouping my resources.

My thoughts are for you as well. You o must feel a bit disappointed with the results. I sincerely hope you turn a corner.

Kind regards

Ade

Hello Ruudboy.

My mrs has a theory. The only people that use forums are people with severe or persistent problems. People who are desperate and looking for answers. It could be that mild or moderate T sufferers are getting on ok with neuromod but are not on these forums. Our severe cases are resistant and hard to treat.

I cant believe that neuromod would have passed all the trials by fudging the results. Thoughts?

Ade

Sorry to hear this Ade, was hoping you were gonna get some kind of relief.

Youre absolutley right Rudeboy. Ok we know a cure may never happen but at least particularly today we have no relief none at all ? Something is just not ringing true here. Were basically told to put up with.

Sorry your experience has not been a good one, here's hoping you feel better soon.

Like the bad joke though,sums it up to a tee.

Thanks for enduring the trial i was offered similar about eight years ago it would cost six grand but they would give me two back if it didn't work i was told by other people it was a bit of a con I don't believe that trial is in the similar vein i still have bad T tried lots I think I will now start mind over matter and a couple of other mind exercise all the best to you

The best cure for tinnitus.

Keep busy 👍

That works for me!!@@

Hi Ade. I am bitterly disappointed to learn that Neuromod has not been a success for you and that it has actually made your tinnitus and hyperacusis worse. You must be absolutely devastated after putting so much faith in it and I sincerely hope you find some peace soon. Surely there has to be someone out there who has had a positive outcome and if there is, why have we not heard from them. If it had worked for you, I think we would all have been beating a path to Neuromods clinic but if your result is a typical one, I don't think anyone will be following in your footsteps. Sadly it seems that we are no further forward in finding a cure and we are left to our own devices to find coping mechanisms yet again. I agree with Curlews post about keeping busy, as that also works for me by taking the brains focus off the head noises. Identifying the triggers is also useful in trying to avoid spikes and in my case, it is tiredness, so I always try to get a good night's sleep. All credit to you Ade for at least trying Neuromod and many thanks for your honest and at times, painful to read feedback. I hope you find some peace soon.

ade-the-pade
ade-the-pade in reply to Jimmuck

Thanks Jimmuck for your kind words. I am in deed disappointed. It is not the just the money. It is having to dig deep into my diminished resources to tackle increased T and H. This truely is a cruel relentless condition that can grind you down.

As you say, it would be nice to hear from someone who reports success from the device.

We are still waiting for the boffin to strike gold and find the cause of T and then the cure. It must be out there somewhere. In the meantime , it is keeping busy, avoiding quiet places and going to bed shattered. Happy day!!@

Wishing you peace and quiet.

Ade

How are you doing now after this length of time 1/1/20

Hello Maryanne. I have not used the neurmod since it peaked mt T and H. It has just returned to pre neuromod levels and I am frightened ti give it another go. I think that I will wait until they have mote concrete evidence that it is safe and works.. For me it has been disappointing and I am yet to hear from someone who reports success.

It knocked me for six so you will understand my caution. Tampering with the workings of the brain is concerning.

Still feel a bit let down as i thought that they had cracked this difficult nut.

Regards

ade

Great to hear from you glad you are back to your old levels and managing very frightening as we know what the brain can do to us keep the faith I am coming up to my 15 years with T I have tried everything as well I have dabbled in EMDR early days but sceptical have a good 2020

Thank you for your kind words. it has been an awful 3 months. At least i know that I can manage ar this level. 15 years? you deserve a medal

Not sure what emdr is so will have a google.

The Bta has a " traffic light" system for giving its opinion on treatments. It has not endorsed neuromod due ti lack of data. One positive person would be a start.

All the besr fir 2020. Maybe this is the year the nut will be cracked.!

Regards

Ade

I've kept thinking about you Ade and wondering how you're getting on. I'm very glad to hear that it has returned to pre Neuromod levels at last. Horribly disappointing though after the hopes, the travelling and not to mention the cost. I totally understand you not wanting to go near it again. Take care, Mikki

Hello Mikki.

It has taken months to get lower but still not entirely back. I suppose that I have got used to the new normal. Im still troubled with nausea. I had an ENT appointment last month and their advice was to stay well clear of the device. Too many unknowns for their liking. Anyway, life goes on abd still waiting for the big breakthrough . Wishing you peace and quiet. Thank yoy for your concern.

Ade

Hi ade I last spoke to you about a year ago how are you doing I hope you are coping well

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