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Hi Greg You’re wonderful. I’m popping back to DM. Will post there.

Time for an update. It has been confirmed that my son has hyper mobile EDS, which helps to explain the neck injury. But not to treat it, sadly, as there is no ‘cure’. We found a very lovely pain specialist who seems genuinely interested in our case, so now we have another person who wishes to...

We saw the specialist yesterday. He was excellent. Over the years of searching for a way to get rid of this tinnitus, I spent many months trying to find someone to give a pain block so that we could get more effective and intensive physio. I didn't manage to do this. People backed out or...

Hi all Some of you may remember me. My son developed severe and distressing tinnitus and neck pain following lifting a kettlebell incorrectly. We have followed all sorts of leads, seen all sorts of people and had all sorts of tests in the nearly three years since. No MRI or x-Ray showed any...

Serves me right for being dozy. Should have woken up and realised it wasn’t your story @just1morething ... I’ll go back to sleep now...

@just1morething that is such good news! I am absolutely delighted for you. I will let my son with tinnitus know. He is working on this too. :beeranimation:

@Lane Apologies for butting in to your conversation with Greg, but my son also has a whiplash-type tinnitus. We are currently looking in to the worth of upright MRIs on the CCJ and cervical spine (mixed opinions) but have considered this Atlas work before. We have also, incidentally, picked up a...

Hi @Coyotesheaven Did you ever have Botox? We are considering it in the neck muscles would be interested to hear of your decision. Kind regards Shirley

I just realised that I never came back to finish this thread. Unfortunately, after dental work with an appliance to reduce the stress at the jaw, there has been no improvement in the tinnitus. I must say that the dentist involved was very kind and professional and really spent a long time...

@kelpiemsp thanks so much for keeping us posted on this!

Just to check back in. Two months on the keto diet (<20g carbs daily) but no change to tinnitus, although not really expected as my son's tinnitus is likely due to muscle strain. Also, comprehensive blood tests have never shown any deficiencies that could be remedied by diet. However, a nice...

I received the email too. We are in the U.K. and so won't be volunteering to go at this stage. Clicked through, though, and I see that to date 75 people have volunteered. I am a little surprised the number is so low but it is early days yet, I guess.

@Markku @kelpiemsp Brilliant. Thanks very much. This is spot on where my interest lies for my son.

@kelpiemsp thank you so much for posting the diagram above. Extremely interesting. Did you put it together or can we see it in situ somewhere else?

Yes, we went through a rollercoaster of expectation and disappointment with TRT. It put my son off talking therapy in general in a big way, unfortunately.

That’s really interesting @Bart . I hope you find it beneficial. Who is running the Research project?

Well, my general wish would be for bigger trials with enough participants in clearly defined subgroups for the results to be mathematically valid for each subgroup - without the need for more trials! Ie more money, I guess!! That deals with the speed and subgroup problems, maybe. My specific...

@andee555 great you have found that a keto diet has helped you feel so much better. About how long did it take for the tinnitus to fade away? Interested as my son has just started on a keto diet and it would be marvellous if it helped his tinnitus. I note from your profile that your cause of...

@Greg Sacramento If only we knew which neck exercises are the correct ones! May I ask who has been giving you treatment guidelines so far? Intrigued by the mention of whiplash treatment. Do you have a good physio? We have our excellent TMJ physio but haven't managed to find a neck physio...

@Codaz Thank you very much for posting this. I am really interested to read it as my son has been wearing an occlusal splint now for about a year along with in- mouth specialised TMJ physiotherapy. No change yet in his tinnitus, though. I will have a good look through the individual papers...

From reading various research papers I understand that it has, in the past, been easier to help those whose tinnitus decreases on modulation, rather than increases. But still possible to help those where it only increases. That research was not into this treatment of course, though, so this may...

I will be interested to hear if the latest work helps, @just1morething. I hope it does!

Shame they didn’t offer the information on rejection. I know I was told why I didn’t get on trials (not tinnitus) when I applied. For me, once was because I am over 50!! Darn cheek! The other was because my nurse put though the application one day late. Sounds like it would be good for you to...

Sorry you didn’t get into the trial, Geoff. Do you know why you weren’t included?

So the tinnitus has to be able to be modulated by some form of movement. But what about the original cause of the tinnitus? Do we know what types of triggering events affect the DCN? Eg can we answer the questions ‘Do All neck injury triggering events that cause somatosensory tinnitus cause...

Btw @Louise what about Nottingham? Don't they do lots of hearing research at the Uni there?

Well, we are not sure, but damage to the TMJ and/or neck is causing the tinnitus most probably. Wish we could find the injury and sort it! Although eighteen months later it could be that the tinnitus is chronic and the injury has mended. I prefer to think though that we can get some improvement...

@Louise so sorry to read that you have had a hard time getting help. If you ever decide to travel, Dr Palanniapan is an NHS ENT consultant at the Royal National Throat, Nose and Ear Hospital in London. He has a special interest in tinnitus and has a really good team round him - audiologist...

A link to this lady popped up on my Linkedin account today. I wonder if anyone has had any dealings with her or the department for their neck pain or tmj? From http://www.uva.nl/en/content/news/professor-appointments/2018/01/corine-visscher-professor-of-orofacial-physiotherapy.html Corine...

We are in a similar position to you @threefirefour . No hearing loss, TMJ problems and maybe some upper cervical problems - who knows what causes the neck pain associated with the tinnitus? Tinnitus modulates with jaw and neck movements and pressure on myofascial trigger points. Really pleased...

@Ambassador I do hope you manage to get on the trial. Are you close to the location? We have registered our interest in it, but as we are in the UK I am not really expecting to be offered a place. Good luck!

Hi @Mathew Gould I suspect you may have seen the paper written by someone who solved his t using a neck brace? If not, you can read it here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4803736/. We followed this line of enquiry, but found there is some controversy over the use of braces making...

Hi Well, we are one week after the appearance of a new loud tone in my son's other previously quiet ear. I believe that the spike has reduced after that first day - hooray! He did take steroids, but my son doesn't feel that they caused the sound reduction, as I think the spike started reducing...

Thank you very much! I have downloaded it and look forward to reading it. Kind regards Shirley

Quick update: Spoke to helpful doctor and he is letting us have some steroids. Even if they don't work, at least we will know that we tried :) !

@Greg Sacramento Hi Greg and many thanks for replying. Thank you for explaining what the enlarged node could be. It has been like that for a few weeks, but I thought it might be worth mentioning. I am going to look into the masseter muscle now. What sort of Doctor would be interested in helping...

@JasonP Thanks for your reply and good wishes. I'm really pleased that your new sounds have gone. My son just woke and I was so willing his new sound to have gone, but it hasn't. I tried our usual doctors' practice to try and get some prednisone last night, but he refused, saying he wasn't...

@Agrajag364 thats really encouraging to hear. Have you any suspicions as to what promoted it to appear? And have you done anything in particular to help it go?

Thank you very much Bill. I appreciated the hug too - I'm rather in shock myself that it's happening again. I'll look through your list to see what we can do.

Just dredging my memory... should our son get prednisone or hyperbaric oxygen sessions? What would you advise ?? He was discharged by the ENT department after MRIs and a full check of his hearing, which was fine. So we are not under anyone’s care for it at all.

Hi there All I have posted before about my 24 year old son’s severe and distressing somatosensory tinnitus, which began after a weight lifting incident which seemed to damage his jaw/neck, and have been very grateful for all the support. Nothing has helped although I believe that most of the...

Thank you @Greg Sacramento I have looked at NUCCA for next. It is very good to hear of people with t getting relief from it. Unfortunately there are no practitioners very close by and travelling is a problem for our son. But I would like to go down that road. I am also investigating pain...

Thank you. I am really sorry that you have had tinnitus twice now, but very pleased to hear that it faded first time and is fading again. That's great news .

@jjflyman thank you so much for your lovely reply! No, he doesn't feel that there has been any improvement at all really. We will just keep looking . We spoke to Dr Sanchez in Brazil and she urged us to find someone well versed in myofascial trigger points plus someone to work on the bones of...

Hiya I have just posted about a flare separately but remembered I had promised to get back to you about our consultation with Dr Sanchez. It went very well, we found her very personable and helpful. There can be difficulties with Skype in having smooth running conversations, but that was ok in...

Hi all Back again , trying to help my son who damaged his neck while weight training and who developed severe tinnitus on the spot. That was a year ago and we seem to have got not very far in addressing it. Playing around with neck muscles last week (only stroking gently and moving head slowly...

@Steve I was wondering how you are getting on with your massages? Are they helping?

I know, Zug. Having tried so many approaches already, my expectations are just gently hopeful. Gotta have hope lol!!

Just to let you guys know that we have decided to have a Skype consultation with Dr Sanchez to see if she can help our son. He developed severe somatosensory tinnitus on lifting some weights a year ago now and has not improved one iota. If anyone has not heard of Dr Sanchez, she runs her own...

Hi @funkyfrog Thank you for asking and for the advice No, no progress at all. Nothing. I believe that his jaw is properly aligned, but I know the purpose of his splint is to bring the jaw down and forwards. His MRI did not show anything out of place, though, I understand. I know his neck and...

Hi @Charbeld ! Yes, my son has a forward head posture and he has spasms in his neck too. Not sure of the exact muscles where it's happening. He says they sometimes feel like they are choking him. He has had trigger point therapy, but only massaging by hand, no dry needling or any other method. I...

Hi @Charbeld ! I am here on behalf of my son, who has had t for a year following a weight training incident, which damaged jaw and neck. We too have tried lots of therapy...physios, chiropractors etc but no luck yet. Just started with a new splint and specialised TMJ therapy, so keeping fingers...

Hi I was just wondering if there have been any updates on treatment at Dr Tanit Ganz Sanchez's clinic in Brazil, since the video series last year? I have been reading her chapter on somatic tinnitus in Tinnitus ed. Baguley, as my son still has loud and distressing t pretty much one year after a...

Hiya My son has TMJ related tinnitus. It is constant and a high pitched electrical type scream. It only varies, to worsen, when he moves his jaw. It has never lessened. What is yours like??

Zach, I'm so sorry your t is flaring. How annoying when you were just trying to make it better. I can't provide you with any direct help, I'm sorry, but I just wanted to say hang on in there. Know that it will settle down again and try your very hardest to think about how much better it will...

No, I guess with NIHL it might not have helped much. My son's t was caused by a jaw joint injury, so it does sound more relevant for him. He's going to have a go with the stick and also mouthguard thingy for night time. We'll see how it goes, fingers crossed! Thanks Fangen

Hi Fangen Thank you for your reply! Sounds like you didn't find your consultation that helpful then. That's a shame, I'm sorry it didn't help you. Did you try using the sticks btw?

@Astro haven't seen you here for a while. How's things??

Hi Just wondering if anyone with tinnitus and TMJ problems has visited Sweden to see Marie Tullberg? She has a dental-based practice specialising in treating people with tinnitus and jaw problems. Here is a google translated page of a news article on her...

Hi CallMeTC Really sorry to hear that you have developed tinnitus. If you have no hearing loss and the t varies when moving head/neck/shoulders i understand it is termed somatic t. In these cases physio and massage can sometimes help. I guess you will know more after your appointment with the...