Two and a half years ago at 03.30am in the morning I woke up instantly to a screaming high pitched sound originating from the left side of my head, just below my ear.Two days later at a GP appointment, it was decided it was probably an ENT issue. Other symptoms followed, headaches off the scale, ear pain and ear fullness. The tinnitus increased dramatically. The baseline increased, as did the spikes, and then the weird stuff started happening. Pretty much every body movement created another even louder spike. Lots of clicking and popping in my head and crackling on the left side whenever I swallow.
Any head or neck movement in any direction produced an even louder spike. Just touching my face, yawning, chewing, talking or eating anything sends a loud spike between resonating through my skull. Even when I walk, as my foot hits the ground, a spike way above the baseline rips through my head.
My baseline T is a ringing/hissing sound varying between 10kh and 16kh.
The general medical diagnosis has been going down the ENT road. I've had every tablet, drug, steroid, CT scan, Sinus scan, MRI and brain scan known to man.
The clicking while swallowing gave hints as to an Eustachian tube dysfunction (ETD) issue but the doctors aren't convinced due to the severity and debilitating T that I have.
After an untold amount of visits to health professionals and a private doctor (£400/an hour and £185 to poke something up my nose) still no improvement at all.
At one hospital I saw their ENT specialist. When I mentioned ETD and she googled it, I knew I was in trouble. The same hospital then arranged an appointment with their big cheese, leading consultant. He just referred me to Guys. I would never have a dig at the National Health Service workers at the coal face but from my experience of the higher ups, they make it feel like the National Referrering Service as they pass me on to another department or hospital constantly.
I won't be going into details about all the other hospitals I've been to or the CBT people, or the hearing aid nonsense or the phone calls from NHS auditory specialists or the meeting with their Crisis team (apparently they are concerned about my mental health) or the monthly call from an NHS shrink because we'd be here all day.
After three hearing test it's pretty much agreed my T is not hearing loss induced tinnitus (HLIT)
I'm completely lost living with this torture and will consider anything for even the slightest improvement.
Went to see an acupuncturist, didn't help but as soon as I met him he asked me my symptoms, even stopping me half way through and telling me the rest of my symptoms. He said with complete confidence, "You haven't got a ENT issue. More likely a TMJ (jaw) and/or neck problem, which can affect the eustachian tube."
Mentioned this to my GP (who's great.)
She sent me to a Maxillofacial specialist which was the most disappointing and unprofessional meeting with a health professional anybody ever had.
I told her my symptoms, all recognised in medical literature published around the world, including the NHS, relating to jaw/neck issues and their connection to tinnitus.
She then proceeded to tell me that "None of those symptoms are recognised symptoms of TMJ and nobody had ever had tinnitus from a TMJ issue."
After returning from a jaw x-ray she stated that she had spoken to her superior who agreed that nobody had ever developed T from a jaw related issue.
As I left I suggested some easy research such as, "The known connection between TMJ and Tinnitus."
I may not have a jaw problem but I am currently working on a process of illimination to try and find an end to this or at least lessen the torture. I was shocked at her lack of knowledge.
Day to day is a nightmare. Haven't worked since the day it started. I never knew how bad it could be.
I have to wear one of those Bluetooth headbands that joggers wear 24/7 pumping tinnitus masking sounds into my head even when I'm trying to sleep.
I take Loprazolam to sleep. Four hours is a good night although two hours is the norm. I'm exhausted and hate minute of every day.
Last week I saw a physiotherapist. She'd never heard of someone waking up with any tinnitus, let alone a condition so severe. She did some upper spine and neck manipulation type stuff.
Since that, my tinnitus is a tiny bit less when I turn my neck to the left, but in truth it's all still unbearable.
I'm now beginning to hate myself and see this, not as life changing but life ending. I have a beautiful wife who I love beyond measure and two great kids but am exhausted from all this and see zero future. In the last few months I've thought about ending it more times than is healthy and have researched fast and supposedly painless methods. I never thought it would get to this.
I'm not afraid of dying but I'm definitely afraid of living like this, which isn't a life.
Not sure what to say or how to explain all this to the people I love.
Sorry for going on for so long.
Love and silence to all.
Written by
Untold
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I’m so sorry, Untold. Your story is very very sad. Not the tinnitus as such but the way you’ve been treated. TMJ is a known cause of tinnitus . Go to Tinnitus UK and put “TMJ” into their search box.
I would strongly suggest you read this. Maybe phone their helpline.
Also, read a bit further down this page and see the replies to posts not dissimule to yours, made within the last few days. You will say your tinnitus is more excruciating than theirs and this may be so, but their stores should encourage you to keep going.
Thanks Rosie, you're very kind.I've spoken to dozens of people with T.
Almost all seem to have HLIT, producing a sound that they finally habituate to.
All the clicking, popping and crackling drives me insane. The most annoying thing is the increase in baseline, even when I walk and my foot hits the floor, a massive spike rips through my skull. I haven't found anyone else with the walking issue.
This tells me its something physical and therefore treatable. This is the thought that is currently keeping me going.
How long I can take this life destroying torture is questionable. Even as I sit hear motionless, the ringing through my head is completely and totally unbearable.
i have the ‘spike’ when i walk,every step,my tinnitus is bad to debilitating,been through all the same tests as you right up to Harley Street ‘experts’.I have hearing loss but already had tinnitus before.Originally bought on through occupational noise banging drilling.
I have hearing aids with blue tooth and stream music and nature sounds.Use pillow speakers at night or the bluetooth headband.
There is evidence that it can be hereditary and my farther had it.Suggests to me a congenital deformity amongst the nerves/arteries close to the ear/auditory system.
Saying that I am sure there are numerous different causes having read all these forums back to front many times and peoples different symptoms.
Sadly not enough research and far too late at my age.
I too have thought many times of ‘ending it’ the torture.
My kids and Grand kids keep me going and i have a big garden to tend,just try to keep busy to take my mind off it.
It sounds like your auditory system is backfiring signals in your brain.I'm no expert and suffer bilateral tinnitus 80db hearing loss in both ears due to Menieres Disease.
My sound feels in my ears as I have a inner ear disease in both ears.
At one point I had sounds in my head and my doctor put me on Nortryptaline not sure if spelt right it's a antidepressant and the head sounds went away.
Also Betahistine helps tinnitus if got Menieres but might be good see if your doctor or ENT will trial you on it and see if it helps you.
Hi Glynis, thanks for replying.Was taking Nortriptyline for months with no effect and definitely don't have Meniere's.
Is Betahistne a antihistamine, I've read a few things about the benefits of antihistamines but just as many horror stories as certain antihistamines can ramp up the volume of some types of tinnitus.
My two and a half years of T is nothing compared to others but I'm struggling.
I've had nothing to do except read about T. I'm convinced that I have a sub type of Somatosensory tinnitus called Cervicogenic tinnitus which spikes with body movement. When I mention things like this to doctors, they look at me like we should swap chairs.
A Professor at a London hospital told me that there is no cure for tinnitus and whoever finds one will be an overnight billionaire.
I'm convinced my T has an underlying cause, something physical, something that is blocked, something that is touching something, that it shouldn't be touching,
that kind of thing. My head, neck,ear relationship feels wrong.
I've tried everything to resolve this but it feels hopeless and it's sucking the life out of me, it's brutal and relentless.
I'm waiting for the results of my most recent MRI although not expecting much.
One thing I thought I'd never say is, I'm going to try some homeopathic medicine, but I am. I've ordered some, probably hocus pocus nonsense but I've tried everything else with zero success, so why not. Will keep you guys updated.
Many thanks. I like this forum. It's nice to know that there are people out there who care, even if I am a stranger.
I have tried homiopathy,chiropracty,acupuncture,massage and none helped.
Doesnt mean it wont help you.I have a nature sound app on my phone and stream through my bluetooth hearing aids which i use to meditate and that helps calm things down a bit.
When i first developed tinnitus i managed to habituate but as i started to lose my hearing it got much worse.The worse thing for me is waking up in the morning to the screaming in my head,long gone are the days of having a lay in i just have to get up and get doing something thats all I can do now.
Playing with the Grand Kids and looking after my sons dog help but i’m getting on a bit now 70 and its a bit tiring.
Yours sounds quite complex with the different sounds.
How do I say goodbye? - Good morning Untold. You don't. Reading your post there - you're a fighter. You're lucid and in control of setting about investigating the causes of your affliction. I have similar to you - somatic - and modulated heavily by body movements/ face/ neck/ teeth, walking, etc. Like you - I woke up with it going full bore one morning a couple of days after straining my neck - which may or may not be connected. Like you; mine's a real screamer as well and yes, like you, and others; I've thought about taking the white light road as well.
What stills my hand? my wife, my daughter, my friends, my interests in life, my work but more than anything it's my dogged intention to not let the T win. How dare it even pressume to do so. Most of my action these days - as, like you, the medical lot run out of ideas around me is in further developing my phychological independance from the racket. I walk, I work, I socialise, I wonder at nature, life and it's possibilities and I do all of this with a bloody minded determinism bourn of a sworn defiance about this most unwanted intrusion of my mind by this affliction. It can make as much noise as it wants, it can try and rule my head, it can attempt to fragment and scatter my resolve but it's not going to rule my life, it's not going to dictate terms to me and it's not going to win. There are people in my life, and I suspect yours - who need me. That means I go on fighting, forever, for the win. That's why I listen to stuff in headphones, that's why I have to put my feet under almost scolding hot water and then in to a bucket of ice cold water. That's why I don't worry what people think about me anymore if my actions appear strange. I do what I need to do to shock my CNS, to wrestle back control of my mind. To survive minute by minute sometimes until the spike subsides. This is war and I'm going to win it.
On a practical treatment level I cannot add much to the solutions you and I have tried as you have managed to be pretty comprehensive in your approcah to potential treatments and therefore will only add that for the last ten days or so I'm using a mouth-guard at night with some positive results. I don't know if it is setting my jaw to a certain position which is proving efficacious in relaxing a bunch of nerves and tbh, I don't care - but it is making the noise different and quiter for longer periods than anything else. Having said that - I'm still having bloody noisey days. It's another dog in the long fight and I'll take that.
I don't know if we're allowed to mention individual brands here (so apologies to the Mods in advance if not) but I'm using a cheap Clench-No-More - about £15 from Amazon. It's personlised by dunking in boiling water for ten seconds then worn to mould to your teeth. It's comfortable to wear for sleep and doesn't slip. My T is noticebly quieter in the morning - and I'll take that.
Good luck, I take strength from your post and feel I'm not the only unfortunate ship-wrecked on the shores of this damnation, and that gives me hope - because strength comes in numbers.
Thank you for posting. It's just what I needed this morning. Live strong. Treat the T with contempt it deserves.
I’m so sorry to read how awful things have been for you. Your experience sounds incredibly distressing compared to my own.
After several years of trying to cope with worsening tinnitus, I developed some slight jaw discomfort. On further investigation it was discovered that my C6 disc has virtually disintegrated. I’m now in the process of the lengthy wait for surgery.
For years I have been absolutely convinced that my tinnitus is definitely linked to the situation within my neck. And most of the various medical professionals that I have visited, have agreed that this is probably quite likely.
I too have discovered that after some gentle neck and jaw treatment via an osteopath, the tinnitus improves and quietens a little for a short time.
TMJ was suggested to also be an accompanying issue due to the ongoing cervical disc situ.
Like yourself I too did the usual Googling exercise and spoke to various people around me about the possible TMJ link and tinnitus. It does seem to be widely accepted that there is a link between the two experienced by a great many individuals.
Recently a GP casually mentioned that Botox treatment can be administered in hospitals if a patient has TMJ, and that often the patient experiences very good results. Albeit temporarily due to Botox treatment having to be repeated over time.
I have since mentioned this to several qualified nurses that I know, and also to another GP - All who ‘moon light’ as Aesthetic practitioners.
All have told me that qualified Dentists who also deliver aesthetic treatments within their practices, are able to deliver TMJ Botox treatment.
Just a suggestion… But perhaps it’s worth having a conversation with a Dentist who also works in aesthetics for their professional opinion. From what I’ve been led to believe, this is something that they deal with fairly often.
I haven’t personally gone ahead with trying this TMJ Botox treatment as yet, to see if it does make any impact on my tinnitus. So I can’t speak from any personal experience as yet.
But as your tinnitus sounds so awful and so very distressing, it might be worth having a look into…
Just a thought…
Good luck, I do hope quieter days will soon be on their way to you.
Sorry to hear your suffering Untold. My story is similar (right ear, caused by bruxism) but not as severe as you describe. Although the severity at the time was debilitating at onset and for the first couple of months I was severely depressed. The difference in mine was just a constant high pitched ring at the same volume 24/7.
I also had a disappointing maxofillo facial appt and before I’d even finished my story and with no physical exam, sat there and told me ‘I can tell you categorically that your masseter muscle isn’t causing your tinnitus’ and sent me for another ENT appt, which of course (for the 2nd time) showed my ear is perfectly fine.
I would definitely continue with physio, it may take time to have an impact. Have you tried a chiropractor? Mine told me that because it was in one ear only, it was probably a mechanical issue. Also I would recommend Julian Cowan Hill’s book - he found relief through cranial sacro therapy. Do you know if you grind/clench your teeth at night - a dentist can confirm this. I use a night guard moulded to my teeth (Sleep pro.com - a hard one not a soft one) - maybe something to try? I also had 3 episodes of severe dizziness and vomiting (caused by the dizziness) before the T started (the episodes were years apart but increased in severity each time) but always upon waking or in the middle of the night which I believe was caused by the continuous night clenching for 20+ years. I’ve read that the force on jaw muscles caused by clenching can be quite considerable. I’ve not had a dizzy spell since the treatments I’ve had. I found a TMJ massage specialist in my area - might also be something to explore?
As time went on my T changed from ringing to hissing and reduced in volume to some days barely noticeable. (I’ve had it since Apr 23).
Good luck to you. Please keep us informed of your progress.
Dear Untold, I am so sorry to hear that you are suffering so much with your T. I have pulsatile tinnitus in my left ear which alternates between a rhythmic crunch, a banging metal door and, in the last couple of weeks, a rhythmic high pitch whistle. Because they alternate I find them impossible to ignore, I habituate to one and another appears. It's taken a lot of joy from my life and I hate it.
I've been battling this for 18 months and I spent many months trying to find answers because doctors were not interested, but it was exhausting and made it feel so much louder and worse.
About 3 months ago I made a decision to stop looking for an explanation. It occurred to me that maybe mine has no explanation and I don't want to give it any more credence and attention.
So I started counseling and have been trying to accept it. Weird though this sounds there are now some moments when it recedes to the back of my mind for a little while. I've started to let myself believe that maybe, just maybe, I can cope with this, because there is no alternative. I want to live well and too many people still need me.
I would not presume to suggest that this would help you but all that I wanted to say is that I think each of us finds a way. Reading your post, even though you might not feel it, you are finding a way.
I really feel for you. When I got T was so low and my major fear was trying to live like this for the next 40 years! You do get used to it after some time. Also I think cervical instability was partly annoying me. C1 and C2 in the upper neck.
To be honest improving posture will probably not help alone. Your C1 and C2 is right up behind your head. I went and still regularly go to a chiropractor. One that knows about cervical instability 👍
I completely understand, as I too have thought about ending it due to how bad my T is and plus I have hyperacusis (which as you alluded to on your post a lot of health professionals (so called) hadn’t even heard of many of the nuances of tinnitus and that also includes this term?? Infact I know more than a GP! So your phone won’t recognise “hyperacusis” either!! Lol) I could tell you my story but like yours it’s deep and messy and like you I bet you’re sick to the back teeth of having to go thru your condition to discuss it with diff ones every bloody time? And then have you had people / friends behave ignorant and not really care about your condition? I’ve even lost so called friends through this! Plus my marriage is constantly being tested too as my wife isn’t exactly the most understanding, but anyway I digress, I would just say to you stay in the fight and you will find your own way but it may take time, I’ve had this fkg thing for 15 yrs now and I’m only 52 now and yes like you I have children (9 and 13 boys) so this horribly thing has manage to fk everything up incl allowing me to enjoy my children properly! What I will say and continue to batter this message until it’s heard by those in authority is this; WE NEED MORE EFFORT MADE IN TRYING TO FIND AN ACTUAL TREATMENT / CURE FOR THIS HORRIBLE DEBILITATING CONDITION! SIMPLY NOT ENOUGH IS BEING DONE, PLUS YOU NEVER SEE OR HEAR IT SPOKEN ABOUT ANYWHERE LIKE IN THE MEDIA?? IT NEEDS “WAY” MORE PUBLICITY AND BETTER TRANSPARENCY ESP OF THE MORE CHRONIC VERSION OF THIS CONDITION. All we’ve got are pills to try to ease the anxiety and depression etc, CBT (Which really doesn’t work for the worse variety of this condition), and “Tinnitus Therapy”?? Does anybody know what this actually is tho?? As I don’t? Lol, apart from talking to an Audiologist!? And that can often make it worse as you’re talking about the bloody thing!? And then after that all we’ve got are noise maskers or else sitting near the fkg fridge or near a waterfall, and that is it!!!! It’s a joke we live in the 21st century now! we can replace arms and reverse sight loss in some cases, why the fk is more not being done about this condition!!?? And this is what we need to be ramming down the throats of those in charge and including the government! I keep thinking maybe I should go on “This Morning”and try and build up the publicity that way round for a starter for ten? But no this condition is roundly ignored by those in the know. But so keep the faith, I knows it’s hard, but things will improve!
Hi I can relate to many of your symptoms and definitely the feeling of hopelessness and despair. I have pulsitile tinnitus and Allsorts of weird head sensations, noise sensitivity, upper back and neck strain. And like you been to different Drs, specialist s in hope of some relief.
I purchased a massage gun and used this on my upper back and shoulders and had some relief. I'm going g to try cranialsacral therapy and see if it can help.
But I know if I didnt have my daughter and Granddaughter I would not be here writting this. My life would be pointless. I just couldn't put them through the pain. So I will keep going and hoping.
prayers for you. You need to find a TMJ dentist if you can. It is definitely associated with that. I have that. My jaw was so off that it affected my swallowing and I had the clicking noise also
Hi Untold, I see you’ve already had lots of good responses. I see you’ve had lots of scans but was wondering if you’ve seen a neurologist? That may sound crazy to some as T is usually related to ENT but it was just a thought. Wishing you better days ahead.
Your tinnitus- so difficult. I was going to say sounds difficult, but hearing about it is extremely easier than it is for you, actually hearing it, must be. All I can add is that you and many repliers mention hating it or fighting it or always masking it. Doing whatever can be done to alleviate it is one thing, but accepting it peacefully is the most helpful thing I've found to do about it, when there is nothing else to do.
I can sympathise with you, and so sorry to hear what you are going through. I have a loud hiss in my head all the time I am awake. It is the worst thing that I have had to endure in all of my life !!!
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How is everyone doing?
6 months in and no improvement 
ringing noise in ears
Pitch of T changes when turning neck
worse tinnitus spike ever
