I have taken the plunge and went to Dublin, Ireland. I thought that I would share my experience and maybe answer a few of your questions. I am by no means an expert but will just speak about my experience.
First thing, my research. I read all the glossy print and checked the research. They clearly have had some success and this treatment works for some people. They have invested heavily and the Neuromod is now classified as a "medical device". Not sure what this actually means but they feel that it was an important step.
I have had T for over 4 years and I am pretty desperate to get some relief. Like most of you, I have been to dark places and tried everything to ease the torment.
Next thing, getting an appointment. Very easy, they called me and booked me in.
Getting to Dublin. Return flight from Luton airport to Dublin. £29.98 return. I got the 6.30am flight to Dublin. No need for Taxis. Got the 767 Airport Hopper to Clayton hotel. 11 euros. A short 10min walk to the Hermitage Medical centre. Very posh set up in part of an NHS hospital.
On arrival I completed a questionnaire about my T. I then saw an Audiologist. More detailed questioning then a hearing test. I had an opportunity to ask 100 + questions about the device, their research, the future, successes, funding, background, time, use problems and I think I then ran out. Frank answers with no bull.
The device stimulates the Trigeminal nerves with sounds through the ear whilst sending pulses through the tongue. This is meant to bring about changes in the neural pathways and stop the brain locking in on the T
She then said the device was suitable for me to try. You may think that everyone gets the same answers but the lady before me was told that it was not suitable for her. The reason being was that her hearing was too bad in one ear. It was a bit sad as she was very disappointed but reassured me that they were not giving it to every one just to make money.
Next stage "The money". I then saw someone else who went through the three payment options. They are trying to make it accessible for most people. 2150 Euros upfront or 12 payments of 225 euros. You get to have an examination, a fitting session and then two further consultations. Each device is bespoke with a personal user plan.
I paid the initial 250 euros and have booked to go back in 4 weeks for the fitting.
My conclusion, I have been tortured with T for 4 years. I know that this is not as long as many. You only get one go at this life and T is reducing the quality of mine. Please let me know if you are going to give it a go. I will of course give you an update after my next visit. Please let me know if this is useful and feel free to ask questions about my experience to day.
Ade
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ade-the-pade
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Thankyou so much for your post. I have been considering this myself, but was not brave enough to make an appointment, I certainly will if your experience is positive. Would be really grateful if you could keep us updated, hope it works for you.
Hello lioned. I asked loads of questions. I have a solid ringing in one ear and a variable whistling in the other. in addition, i have hyperscusis in the mix. They quote that 60% of people record improvement. It is very difficult to measure the amount of improvement as it is so subjective.
I am happy to give it a go. ill report back. If i have missed anything then just ask and ill try and answer.
I am feeling positive so far but being cautious about my expectations.
I know there are 4 visits to neuromod clinic: 1-evaluation, 2- having the device adjusted for your own needs, 3- 6 weeks into treatment evaluation, 4- final evaluation and follow up. You will use the device 1 h Per day, half i the morning, half in the evening.
I think fitment is a misleading term. The equipment is Blue tooth head phones. A unit 14cm by 14 cm by 3cm, A lead plugs into it and this connects to a device that is placed in your mouth that touches the tongue. "Fitment" is just showing you how to work it and them you demonstrate to them that you can. They say to allow 90 mins for the second visit.
You then use it for 30 mins a day for as long as you need it. It takes weeks/months for new neural pathways to form.
I wanted to do the initial session and fitment all in the one day. They told me that this was not possible. At present the gap between these the two sessions is currently 4 weeks.
Hope it all goes well. I paid by Credit card and my provider charges me 2.75% as it goes through in Euros. I have just applied for a Halifax Clarity Credit card. They do not charge for foreign use. That would save you a bit of money .
Did you already have hearing aids? If yes can this method be done in conjunction with? If not did you ask this question? How long, if you are 1 of the 60% did they say it would take to either work or commence reducing the tinnitus?
Hi, I do not wear hearing aids but have reduced hearing in my left ear. They say it is OK for me. The lady before me had no hearing in one ear following an operation. She was told that the device was not suitable for her. I take it that there is a sliding scale and at some point they do give the device.
I suppose that is why they insist on a full assessment.
I have been tortured for 4 years and it has had a serious effect on my life. I need to try something and this seems a good option. I will off course keep everyone updated.
If you can afford it then it seems to be worth a go.
Hoping for the best and preparing for the worst. The strange thing is that I'm almost expecting the latter, so I don't think I'm going to be too devastated if it doesn't work. We'll know by Christmas anyway!
Did you get the 767 bus there & back? Where does it drop off / pick up near their clinic? Their website suggests it drops off by the Clayton Hotel, but then the map shows it sailing on by?
I had planned on going from the airport into the city centre and then getting a service bus out to the clinic, but yours seems better as it's much more direct.
I got the 767 airport hopper. It is a small red bus leaving from Zone 16 in the Coach station at Dublin Airport. There is a 777 run by the same company that stops on the road outside the hotel. It is a bit confusing. Any one will do and I asked the driver to drop me off at the Hotel. You can pay driver in cash or book return ticket online for 20% discount. It is a 10 to 15 min walk to the Hermitage Clinic. If you put the hotel and clinic into Google maps and select "walk" then it will show you the route. It is pretty easy to find. It is a high place and people can direct you if lost. Suggest you print off map.
There is a big shopping centre up the road from the hotel. You can check that out if you have free time. Good for coffee and lunch
When finished I got the bus to Dublin city centre. I had a day to pass as flight did not leave until 10pm, there is a bus stop on the slip road on the N4 outside the hospital. I'll try and copy my map and show you the bus stop. Bus 25 and 26 take you to Dublin city centre.
It is 3euros exactly and bus driver do not give change or note. Get some change.
There is a bus back to the airport in O'Connell street. This is the main street in Dublin so easy to find. Keep walking and you will see the clearly marked bus stop 7 euros and you can pay the driver.
If no time to go to Dublin centre then get 777 or 767 back to airport.
I have booked more convenient flight back at 4p so will use the airhopper to and from the clinic. If you want to go into Dublin let me know and I will show you where to get the Dublin bus.
I am thinking of going to Doubling to give it a try but I am hesitant because I have to take a four hour flight to get there without having any clue about the device. My T and hyperacusis are debilitating. Please , share your experience.
I too have some hyperacusis. The audiologist was hopefull that it works well with this. I am will to pay the money and take a chance. Even a slight reduction in noise will help me.
many thanks Ade, i intend to try this too, i am 18 months into this nightmare, i will follow your treatment and pray it helps you, even if i get a reduction in the loudness i would be happier
Hi Ade, thanks for the post, interesting and potentially positive news. I’ve read earlier posts that suggested that they wouldn’t consider people with very severe T, do you know if this is true or if their criteria has changed ? I’d like to explore the possibilities of this but fear I may be unsuitable. Having said that, your T and hyperacusis don’t exactly sound like they’re moderate and you’re suitable...
I consider my T quite severe as I hear it 24/7 and evening when I am driving the car. It is louder that a TV. It drowns out conversations. The only bar seems to be sever deafness and an underlying medical condition. It has to be worth a try. At some point someone will make a breakthrough. Maybe this is it so I will give it a go.
I got a good feeling about this when talking to the staff. Off course they have to recoup money for their investment. It will be years before this comes to our NHS.
Cheers Ade, well I’m not deaf and my T is not due to a medical condition although it is very odd and sensitive to certain things and quite reactive to noise, similar to you, I hear it always and it’s above the TV etc. Being in a car actually makes mine much worse so some similarities. How did you go about it all, did you just give them a call or drop them an email ?
I had previously registered my interest and they rang me. After that I just gave them a call. Often it went through to an answer phone but they always rang back.
Thanks again Ade for your reply. Please do keep us updated on your progress. I will be contacting them myself to see if I can get something arranged. All the best
Yes I did. They said thst this was a matter for the commercial dept. However she stated that she believed that they were aiming at the USA and Germany for the next roll out. I think that it will be a while before it is on the NHS.
Desyncra / ACRN is AFAIK just sound therapy. It uses the sound element of this latest treatment, but without the secondary stimulation of a separate nerve.
I believe it's been shown to be largely ineffective, although I think it is provided FOC to US military veterans, so someone must think it's worth spending money on. Not me though.
Hi Ade. Many thanks for sharing your experience. It sounds very positive and I cannot wait to read about your progress. You are the pathfinder on our search for some help in easing the torture we all suffer and I sincerely hope Neuromod will be the solution for some of us at least. Well done on taking the decision to do it and I wish you every possible success.
Thank you for your kind words. I am a bit overwhelmed by the support. Ruudboy is also making the trip. I have my flights booked so no going back. i will of course do a report after my next visit to neuromod. There is an hour long youtube item where the tinnitus hub interviews the CEO. it is worth a watch.
I really hope it works. Not just for me but it will give hope to the many millions out there suffering with this awful condition.
My assessment visit went OK. Didn't seem terribly thorough TBH, but I guess it's more to screen out any candidates they feel it might not be suitable for.
I'm back there next Tuesday to get my device. Feeling more nervous as the date looms.
Morning, just wanted to say I have an assessment booked for the 30th August, flights also booked so am going. Please let me know how the fitment goes, hope it works for you. Haven’t seen a post from Rudd boy yet, waiting to see how he got on.
Busy week ahead. I am on my wat back from France after a family Holiday. Work tomorrow and Thursday. Fly to Dublin early on Friday morning for the fitment . London Saturday morning to Register for the 100 mile Prudential Cycle event. Then on Sunday hopefully complete the event to get sponsorship for the BTA. ( Big thanks to you for sponsoring me).
I'll write a bit more about my trip to Dublin when I get back.
I am in a hopeful mood and will give it a good go. You need to hang onto something that will help with this condition.
Did things work out ok with the bus to the hospital? Ade
Yep, all good on the Hopper - a great find for the multiple trips we'll have to make out to the clinic.
There are some Tinnitus Talk users who are already using Lenire and they've flagged their T appears to be reacting badly to the attempted intervention. Spikes and fluctuations etc. Apparently Neuromod do caution that this is possible, but it might be that it gets worse before it gets better. Let's hope it's worth it.
Thanks Ruddboy. I did ask the Audiologist about making things worse. She said it may happen but no reported worsening at the end of six months. My T spiked again just before last Christmas and never went down. Another spike would not be funny!!.
Hope all goes well for you. It’s a little scary to think that it could get worse before it gets better with this device. Please let us know how you get on. My assessment is on 30th August
Hi Ade, I have read on the other forum that you have to take an audiologist report with you , is that correct, I’m worried as I don’t have one, just the general result from the consultant. Sorry to ask another question.
You don't need to take an audioligist report. Their audioligist did a test. They asked if I had a recent exam and I said "no". They just wanted to check if I had an underlying condition that may have been causing my T.
Ive only just developed tinnitus, got a hissing in left ear constantly and sometimes rings in the right while in bed. Am awaiting a CT scan. Would be grateful on any positive tips but this new thing in Ireland looks promising. I believe these positive things can keep us going. Looking forward to how you get on and is this only available in Ireland ?
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