Neuromod. Update on the update. 9 wee... - British Tinnitus ...

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Neuromod. Update on the update. 9 weeks already

ade-the-pade
ade-the-pade

Folks, not much good news I'm afraid. You will recall that after me last review that I was encouraged to get my use up to the full 60mins a day. I did this for a week and it sent my hyperacusis through the roof. This was accompanied with headaches. The whole thing became very difficult. As I result I have had to have a short break until things settle.

Clearly something is going on with my brain. Either that or it is just being aggravated by the sound and the electrical impulses. If there was a guarantee of success then I could be encouraged to soldier on. However, it is difficult to do this as I have a concern that things may be permanently worsened.

I can't think of what else would have sent my ears off so am attributing the effects to neuromod. I don't want to put people off but will report my experiences.

You come to terms to coping at one level and we all know the difficulty of having to battle against an increase in T.

Plan is to have a short break and give it another go. Sort of stuck between a rock and a hard place but need to give this a full go.

Hopefully my two other cyber bubbies out there have had more success.

41 Replies
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I'm so sorry to hear this Ade. I can understand you wanting to take a break and I hope it settles down soon.

thanks mikkijan

Wow, that doesn't sound too good, hopefully you start to notice a good difference in the not too distant future

Thank you.

Ade

Thanks very much for keeping us informed

Ade. I am sorry for your disappointment but admire your tenacity in having a plan when you’re ready to move forward again,

I have been diagnosed for a year and thank God coming to terms with the condition.

Like you the T is accompanied with hypercausis.

I carry on with my life now regardless and retreat only on the really bad days.

God bless you all I this site...... you help keep me strong!.

Thank you for your support. Just having a bad patch mixed in with disappointment

Life can just be unfair at times. This is one of those times.

Ade

It can inderd😥

Verma54
Verma54 in reply to ade-the-pade

Life’s a bitch but you’re not alone as we all share similar fears and anxieties irrespective of the noises in our heads: ears

Hi

Keep strong buddy.i am praying for you.

Jen

Thank you very much.

Ade

Stay strong Ade - like Jen , il pray for you that things will settle back down x

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

Thank you for the positive words.

Ade

Ade, do you take any medication? Certain drugs cause T especially for blood pressure.

Hello Bellyboo. I am on a right mixture at the moment. Trying to cut down very slowly. I dont want to much change as I will have no idea what is actually beneficial

Ade

The Doctor at the Royal Ent is trying me on topirimate. Starting on 25mg up to maximum dose. Started this 4 weeks after neuromod but they made me really sleepy all the time. It is not good changing two treatments at the same time as you will not know which one is working or making things worse.

Ade

Ade, I am very sorry to hear this. I have read one piece of advice that 'change in Tinnitus is good as it means it can be treated' I offer this by no means as advice, simply sharing information. With the white noise treatment the Neuromod audiologist suggested to me my tinnitus has also increased. I notice this most when I take the aid out, it takes 12 hours to calm down . I guess you have told neuromod, have they said take a rest or persevere? I do wish you all the best. Kind Regards, Mark

Thanks Mark. They suggest that i persevere. However, i have battled with T for nearly 5 years. I know that mentally i need a bit of time to re group. a bit low at the moment and feeling a bit sorry fir myself. Ill soon bounce back.

Thank you.

Ade

I'm still plodding on with my Neuromod treatment, but sorry to say that I've seen no improvement as yet. On the plus side, I haven't experienced any worsening of symptoms. Getting a bit fed-up of getting up at 5.30am to fit in a 30min sesh tho.....

I'm clinging to the hope that it takes a while for the neuroplasticity this device aims to induce to take effect. I guess rewiring your brain doesn't happen overnight.

I saw a testimonial yesterday from someone who only started seeing improvements at week 10 and there was a lady on the original clinical trial who did the full 12wks with no changes, but then her T faded a few weeks after she'd finished using the device.

We live in hope! Along with a large helping of suffering unfortunately.

Thanks Ruudboy. Sorry that you are not enjoying success. I have not given up but need to regroup. I suppose that underneath i wanted this to work. My Hyperacusis is at an all time high so need this to be at a unmanageable level.

Hope that you get some progress.

Kind regards.

Ade

Hang in their mate soo much respect .

ade-the-pade
ade-the-pade in reply to soul64

Thanks soul

Really appreciate what you are doing, if you don’t buy a ticket you won’t win the raffle, let’s just hope it’s not been drawn yet!,, thank you .

Really positive words. Still glad that I am giving it a go.

Ade

I tried laser therapy four sessions my tinnitus got loud didn't help at all.

Hello Freddy. No idea how laser therapy works. Not heard of that one. Is it nhs?

'No idea how laser therapy works' - it doesn't. Waste of time and money trying to treat tinnitus this way.

Allan1967 on Tinnitus Talk also had a worsening in their tinnitus from Lenire

tinnitustalk.com/threads/le...

You should probably post your expeirence in tha thread too!

ade-the-pade
ade-the-pade in reply to p3tteri

Thanks. I posted my experience. There seems to be a lot of reports of worsening before improve ment. When i get my energy back I'll go again.

Ade

Hi Ade...keep strong mate and it will work out ...take care 🙏🏾

ade-the-pade
ade-the-pade in reply to Verma54

Thank you.

Ade

Thanks for your update. I hope a break helps. Back in work with new noise exposure post building work - air con & high pitched fan noise - so I know what a pain hyperacusis is! Back to white noise to distract and calm in a quiet office setting.

I am debating trying neuromodulation - not clear if I am a suitable candidate as born with bilateral loss - not age related loss. Seriously considering it if there is no improvement after this academic year

ade-the-pade
ade-the-pade in reply to Vibe19

Don't want to put anyone off neuromod. it clearly works for some. Hopefully i get back on it when things settle a bit. Good luck on your journey.

Ade

Hi, Ade-the-pade,

Sorry It's not working out well for you. I've just read an article that says Neuromod have just secured 8 Million Euro funding for this service. Clearly they've conned or convinced the right people of its merits.

Maybe that's a good thing in that they can advance their research more quickly. It may also be true that it works for some but not all.

I hope that after your break it can give you some benefit.

Respectfully submitted,

Keoni

ade-the-pade
ade-the-pade in reply to Keoni

I think that they are honest. They say that it does not work for everyone and that T can increase initially. zi plan to give mine another go.

The science behind it seems ok. in my humble opinion. They day that 60% get improve ment. That means that 40 don't or get worse.

Pay your money and take your chance.

Regards

Ade

Hi Ade,

Am I right in thinking that Neuromod isnt suitable for people with hearing loss ? This my issue ..allegedly!

Currently using hearing aids but not getting on with them.

The rule of thumb they use IIRC is that you can have no dips on your audiogram above 40db in the lower frequencies and nothing greater than 80db in the higher.

If your line dips below those marks at any point, they will, at present, decline to take you on as a client.

It depends on the amount of hearing loss. I not sure of the exact figure. Too much and there is no sound stimuli. The lady who was there during my assessment was deemed unsuitable as had significant hearing loss in one ear.

That is why they do a hearing test.

Hope this helps.

Ade

Any progress Ade? I was back over in Dublin yesterday, bemoaning the fact that I haven't seen any improvement as yet. They were keen to stress it's still 'early days' and this is a long-term treatment protocol.

I think the messages everyone has been taking are that this was a 12wk program, with improvements expected within that timescale, but they're backpedalling from that position now.

Hello Ruudboy. Sorry that you have not had any success. My T spiked and my H went through the roof. On top of that i ended up with constant nausea. I went over to see them again at short notice. They changed the programming to something that has a series of beeps with no background noise. Suggested that I try 15 mins a day.

I did that for a week but no change. Noise increase and nausea. They now suggest that I take a break from it. It has clearly upset something in my head. They say that it has not effected anyone else in this way. Now need to find some solid ground.

Not been a great experience.

Ade

Hi

Well I can confirm the exact same symptoms. Initial 12 week my T went up and introduced a new frequency, so now I have 2 tones in the left and 1 in the right. They then reprogrammed the device and the resulting next 12 weeks is that my T is through the roof, to a point that it is waking me up during the night and totally disrupted my sleep. I am now so desperate that I am on antidepressants and don't want to say where my thoughts have taken me to, but you can probably guess. And all for 2k and cost of flights etc just to be used as a lab rat to further their data gathering. They want me to come back for another reprogramming and as you can imagine the thought of it ramping up even further scares the life out of me. My life is now ruined.

I share your pain. I had a ENT appointment last month and they stated that I would be foolish to use it again. They say that there are too many unknowns with trying to reprogram the brain. I can honestly say that the latest increase in T and H was the closest I have been to breaking.Hopefully your T will settle down again.

Good luck on your journey.

Ade

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