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.
Hi Lifeseeker, haven't tried that, although I have just had for 4 days, the most brutal bout of influenza and it was effing great. It took my mind away from the incessant ringing for extended periods which hasn't happened for a while.Still waiting for another follow-up appointment as they try to assess my situation. If I'm honest I'm so completely lost mentally I'm not sure I care what happens anymore.
I think it was Robin Williams who said, (paraphrase) "People don't fake depression, they fake being okay."
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 !!!
My Tinnitus was caused by poor posture and TMD. can modulate and cause spikes by turning my head, tilting my head from left to right with ears toward shoulders, pushing on the sides of my nose, pulling down on my scm muscles, Shrugging my shoulders and bringing my shoulders way back, swallowing. jutting out my jaw, etc.
These are temporary spikes that go away and back to baseline (mild and some days not even noticeable) when released or moving the affected body parts back to normal position.
Lack of sleep or any type of heavy lifting will cause an increase of baseline until muscles have stopped spasming and more sleep and rest are achieved.
Used to be so bad i was suicidal when it first came on (It was extremely debilitating) however cervical work on my C1 and C2 as well as cleaner eating, Magnesium citrate and glycinate supplements, vitamin D3, Liposomal C, B12 shots once a month, and plenty of water have helped tremendously.....along with swedish massage of all my head, neck, shoulder, and upper back muscles are a work in progress and will be starting with a PhysioTherapist specializing in Myofascial trigger point release of affected upper body and head muscles.
If your T is not caused by hearing loss or damage to the ear in any way and you have upper body head neck shoulder muscle / skeletal problems than you are most likely dealing with some type of somatic T. Does it spike when you move your head around? Does it change when you move that shoulder araound?
Hi Drummer. Only just seen this post. My T has a constant background ring/hiss. If I move my head and other body movements it spikes. The worst is jaw movement. If I push my jaw forward, the T spikes to three or four times the baseline volume.It even spikes when I walk and my foot hits the floor. What the hell is that all about?
Everything is on the left side. No T on the right.
I have a lot of relief by having Swedish gentle massage to my head neck and shoulder / upper back muscles once a week. I also have my cervical spine checked by my atlas orthogonal specialist once a month to once every couple of months. Also, NO HEAVY LIFTING!!! And, if i try to stretch my arms above my head to work on something like cleaning or moving things it spikes my T....UGH!!
I am 60 years old and have played drums for 45 years. I never used hearing protection until the last few years since i got sick and had this T problem come on (Long Story) My hearing tests the last 3 years show mild high pitch hearing loss completely normal for my age... no damage from drumming....i am extremely lucky in that aspect. When the T came on it was like a freight train low his and rumble constantly with no letup... i had hyperacusis at that time. However all of the work i have done to my body through chiro / cervical specialist / ultrasound treatments to shoulder and neck / diet / supplements / have made the hyperacusis go away and bring the beast to its knees and only deal with a very high pitched his that can be drowned out at 8-12,000 hertz of T videos on youtube.
On bad days i can put my front teeth together and they chatter as if i am freezing to death and i honestly would have no idea that my jaw muscles were spasming unless i put the teeth together. I just had major sinus surgery and am getting back into head neck and shoulder physio massage as it calms it down a lot. The more sleep i get the better it is however at my age getting more than 5-6 hours a night is tough
Hi Drummer.I still don't know what to make of this torture. I'm two and a half years in.
I'm 63 but genuinely fit as a butchers dog, enjoy life, very sociable. But that life is fading. Now, I've got this Bluetooth headband on 24/7, pumping sounds into my head to keep me sane and I rarely leave the house for more than 10 minutes.
The lack of knowledge in the medical profession on this subject deflates me and I can't look towards a future like this.
Four hours sleep is a good night, with Loprazolam. My skull is currently ringing like a bell. I can't believe that my neighbours can't hear it.
I'm grateful to everyone on here and their positive encouragement, my life is completely different/destroyed now.
I don't know what to make of my life now.
I'm not looking for sympathy, although I did think the NHS might be able to give me some hope. If my distress was halved, I'd take that right now.
I don't know how this story ends, but this is brutal and never stops.
I responded to your post with a lot of information that helped me ...... Thank you for the response however i do not get the feeling that you are going to try any of the things i have done to lower and bring myself extremely close to silencing the beast..I had to become my best advocate while deep searching hundreds and hundreds of internet pages and forums to get the results where i am right now. Good luck and i hope you are able to lift yourself out of this depression and start searching for / doing things to help yourself out of this.
A genuine thank you for your help and support. I've got my second physio appointment this coming week so we'll see how things pan out. I'm going to my GP this week in the hope she may be able to refer me to a TMJ/neuromuscular dentist.When I saw the Maxiofacial people they said my jaw is fine. Not sure they totally understand my issue and the jaw muscles connection to tinnitus.
Hey buddy just checking in to see how you are doing. I am not on my gmail often so i am just now seeing your replies. Please keep in mind that everyone has a TMJ - Temporomandibular Joint... not everyone has TMJD = Disorder. That being said, my TMJD is all in the muscles of my head face neck shoulders and upper back. This disorder is not just the joints... i have been cleared of that by having a Cone Beam Scan. You absolutely have got to start seeing somebody about your cervical spine to make sure your atlas and axis are in the right place. You also need to start having or start seeing some kind of phsio therapist about all of the muscles i just listed. You absolutely are suffering from Somatic Tinnitus / Somatosensory Tinnitus. You also need to start supplementing with Magnesium Glycinate and something from your doctor to help ease your central nervous system.... fight or flight cannot always been felt however you can be in it just by obsessing over Tinnitus. This is not funny but oh so true.... Being on the forums for too long can actually make it worse... and that is a FACT. To research more real time sufferers of T and to find more solutions you should visit Quora and Reddit and do a search for positive outcomes of Muscle related / neck related / injury related Tinnitus.... just dont spend to much time of these forums as it is actually bad for our situation. I have enclosed a picture of a 15 page research article that i found and it helped me alot. please do a search for it.
Hi Drummer, not much has changed.Still wearing a Bluetooth headband 24/7, pumping masking sounds into my skull. Taking Loprazolam to get two or three hours sleep a night, completely exhausted.
Thanks for that article, I'll track it down. Seen a physio a couple of times.
She said I had tight neck muscles and probably just the usual wear and tear for my age.
Read a piece about this C1 C2 neck issue connection with T and Somatosensory tinnitus and sub type Cervicogenic tinnitus. Didn't know what to make of it, quite detailed. One interesting point was there must be something else in conjunction with the neck issue. The point was, there are tens of millions of people aged between 60 and 100 with cervical/upper neck problems but only a miniscule amount of those people had T, so there could/ need to be another symptom running along side.
In truth I don't know what to think
anymore.
My ETD is consistent with a few diagnosis, currently reading up on Tensor Tympani Syndrome, which makes sense up to a point but like every road I go down, it doesn't seem to take me to any conclusion.
Still can't fathom out how one night I go to bed without one symptom and then wake up around 3am to a multi-sympton life changing torture
Will pass on anything positive, if that ever happens.
Sorry to hear of your struggles! I'd be surprised if any of us haven't felt like giving up, especially after hospital specialist visits. I'll detail my issues and what I find kinda helps at times.My doctors won't even give me anything to help sleep. Mine is worst at night and I have to use an amazon echo speaker playing white noise all night to drown it out but I'm wary of putting anything loud in my ears to possibly cause deafness especially as my hearing is supposedly perfect/in line with someone my age. Mine is Pulsatile Tinnitus and a lower pitch but the volume helps mask it. Hopefully your loudness will change over time. I've been having a particularly bad spike for some months now. I have definite issues with near enough every joint in my body (only fibromyalgia confirmed but have had constant issues/injuries due to being accident prone etc) and especially bad issues with the head, neck,ear relationship as you mention.
I would definitely try a chiropractor but one that physically manipulates your body with his/her hands and using bench drops as opposed to just a clicky thing. Whilst it doesn't cure my PT it has lessened it occasionally in the past and it resets everything -i have to rest afterwards or ice things as they will be sore but no pain no gain and a lot of it sounds worse than it is esp around the neck as its clise to your ears - I was like what's the point in seeing them after I'd tried everything else but now I see one once a month and have been doing for years. It may helps with footsteps etc. As impacts may not follow through your body etc. Sometimes my PT can be worse with stress and thinking especially as it's hard to concentrate and I get a lot of tension headaches in my front forehead. It's best to just stop when this comes on. If my jaw is 'off' I know I need to see my chiropractor immediately. It gives a lot of referred pain to my face, temples, and can give burning and crawling pain going up the sides of my head to my crown. It can affect how your teeth line up when eating. My chiro also helps stretch my neck as these are not things you can easily do yourself. Since having the neck muscles stretched I get less pain in the front of my neck which used to be daily and bad. I have to travel over an hour to see my chiro and he's based in Rotherham and can give you his name if you want to try him - he does above and beyond for me.
It's more a case of finding someone who is best for you. I've also seen Mr Axon ENT in Cambridge he's more knowledgeable than most although like with most Ents I wasn't given much time to discuss things with him. Waiting for an operation but it may not work. My PT is due to narrow veins and thin inner skull although I've only had it since 2020ish, after alot of stress and noise caused by others - possibly making me more sensitive to sounds. Music has really helped me - country especially as there's limited bass etc.
I had a sinus infection on a plane journey home . Saw my doctor after 10 days one ear still blocked. he told me not to worry , do some steam inhaling. He didnt say how much . A week later still inhaling , so did it for an hour before bed. Woke up next morning with a flock of screeching parrots in my head. Lasted an hour ,couldn't move off the bed or use the phone. eventually it subsided to a very high pitch shrill. ( any higher ,I'll swear I wouldn't hear it ). Saw doctors , consultant -no help ,had an MRI -nothing . I decided that in the night the hot air had built up inside my ear. The only way it could escape was to force a tiny path along the eustachian tube ( mine are wonky), if you blow up a balloon and release the air through a tiny gap , thats what it sounded like. I think I know how you feel , life changed. I didn't want to get out of bed, The very loud hissing was unbearable. I didn't want to be here. I bought a sound machine , the only sound that worked was the heartbeat one. Took about 20 minutes , then it seem to quieten the T, and relax me enough so I could sleep . Used it for years and took Gingko biloba. There will be something out there for you , But we all know it takes time.
I'm almost three years in. This has totally destroyed my life. I have to wear a Bluetooth headband 24/7 and can't work.I'm a say it as it is type bloke. Look on the the habituation thread and you'll see what I mean. When I hear about talking therapies etc. I'm not interested. If you came off a motorbike for instance and smashed your leg up, the doctors would look for what is wrong, and find the reason for the pain and correct it, they wouldn't suggest "having a chat." There must be an underlying cause and that goes for T.
I've had all the scans imaginable. Osteopathy, Chiropractor, etc. Various ENT specialist ( they don't know anything)
Imagine being an consultant on £300,000 a year and your day just involves telling people to live with it, there's nothing that can be done. Great work if you can get it.
Hi Untold , guess you’re still mad as hell ! Understandable but sadly that doesn’t help any , in fact it can make it worse . I wear an ear phone attached to a pocket radio . Day and night . I listen to the talk station LBC . Music makes mine worse . I found using a computer, car journeys, or falling asleep near certain electrical appliances makes it worse. Sadly unless there is a medical issue causing T , they probably won’t find anything . They say it’s in the brain not the ear (. But I’m sure mine is ) The first time took me a few years maybe 5 , before I stopped hearing it . This 2nd time , I’m nearly 2 years in . Yep it’s still screeching at me . Oh yes I’ve had a consultant telling me he knew what I was going through , because he heard a small noise in his ear occasionally . I could have strangled him . So sorry you are going through this . On here, we can only offer sympathy and give what advice we think might help someone get through this. X ……
Try LBC on your head band if you can get it . I find that I get interested in what they are discussing., so I’m listening to them and not my T although it is still there hissing away in the background .
I came across your post just now, during a sleepless night looking for some distraction. I realize it's two months since you posted, but thought I'd add my two penn'orth nonetheless.
As I was reading your story my immediate thought was that you seem to have a TMJ issue. One-sided, possibly the result of acute inflammation owing to bruxing at night (grinding teeth).
If so, the specialist you might find helpful in my opinion is an orthodontist rather than maxillofacial. They have the special skills needed to check and precisely measure your bite to see if it's out of alignment. Orthodontists are much better qualified to judge dental/jaw issues than a routine dentist, even one that's had some TMJ training. As we age, our lower jaw moves forward slightly and this can cause problems if a bite is already on the cusp of misalignment, especially if we grind our teeth (bruxism or 'bruxing').
If you are bruxing (some people are apparently unaware that they do it) and have an aggravated TMJ, the conditions can both be relieved with the correct device, such as a Michigan splint, that has to be custom-made and fitted by a dentist. This helps reduce joint inflammation and muscle tension.
A visit to an orthodontist, often attached to a good dental surgery, will probably cost around £100 for an assessment and may not require registration with the routine dentist at the surgery. In my opinion, it's well worth the cost.
I am not medically trained, I speak only from personal experience. I have T, I brux, I'm old and I'm in the process of having bite misalignment adjusted by an orthodontist. There's no age barrier to orthodontic adjustment whether it involves tooth/bite re-alignment, splint or whatever. I don't expect the treatment to fix my T which is thought to have a different trigger (blood flow related), but it should at least stop me breaking my teeth! The orthodontist did ask me about my T saying that chronic bruxing and TMJ issues can trigger it.
Whether you choose to see an orthodontist or not, I hope you have at least found some method of easing/habituating to symptoms since you posted.
(Tinnitus UK moderator note - this post discusses difficult emotions and thoughts around tinnitus and may be triggering for some readers)
HI bredgeit. This will probably turn into a ramble but here goes.I don't know what to think about T or any of the "experts" associated with the condition. In my experience, all of them know little more than me.
I attended a Maxfax hospital for a TMJ investigation. On arrival I was assured by their No2 expert that, "Nobody ever, had got tinnitus from a TMJ issue ever, in the history of mankind."
I was sent for a jaw x-ray, which showed no problems. On returning from the x-ray, their No2 expert told me that while I was having an x-ray she had consulted with her superior (expert No1) who agreed that nobody had ever had tinnitus as a result of a TMJ issue.
I googled expert No1 when I got home.
This guy has 70 international peer reviewed papers published but apparently had never heard of tinnitus being associated with the temporomandibular joint. If this was the case I knew I was in trouble.
Visited a dentist who said there's no obvious evidence of grinding of teeth, although that doesn't mean it's not happening.
My problem with T started instantly.
No warning, no nothing, just woke up in the middle of the night with screaming tinnitus in my left ear.
I've just had four days of the most brutal influenza and it was great because I had extended periods where I forgot about my T.
I don't know what to think anymore regarding T.
Attended top London hospital. (Different place from Maxfax experience.)
Here what happened.
Appointment 1. Saw their expert No2. Was asked about my symptoms and sent home.
Appointment 2. Saw their expert No1. Was asked about my symptoms and sent home.
Appointment 3. Had MRI and CT scan.
Appointment 4. Was a telephone appointment and was told they can't see any issues.
Appointment 5. Was a telephone appointment where expert no 2, once again asked me about my symptoms.
Appointment 6. Was another telephone appointment where expert no1, once again asked me about my symptoms.
Clearly the right hand doesn't know what the left hand is doing.
I've seen other doctors, one charging £400 p/h. I asked one doctor if my situation could be due to a Somatosensory or Cervicogenic form of tinnitus and he looked at me like I was talking Martian. I won't bother about the acupuncturist, the osteopath or the chiropractor because they did zilch.
Don't know what's next or what to expect.
Currently sleep maybe two or three hours a night with the aid of Loprazolam.
Haven't worked for nearly three years and have spent every penny I have saved since starting work in 1977.
Praying for a swift and painless death as soon as possible.
don't ever worry about having a ramble, or a moan-on. Sometimes, the experiences we go through beggar our belief and we wonder what on earth have we done to deserve this? Things often can get a bit much when we're suddenly unwell with a torturous symptom or more, having had years of good health that we never expected to suddenly crash. It doesn't help to be given the runaround by medics who sometimes seem to specialize in offering mixed (and unhelpful) messages.
When sudden illness happens, serious mental trauma can result and it can be difficult to see a way through it. as UKPat says, therapy can help, but you need to be ready for that and find a good practitioner.
Sadly, those of us with difficult-to-diagnose issues often need deep pockets to access the private route to get anywhere at all with searching for the cause of our woes. There are never any guarantees.
You mooted somatosensory T that might be cervicogenic. A very, very good otolaryngologist (Patrick Axon) mentioned somatosensory as a possibility to me several years ago. It was a fairly new field when he broached the topic, but IMO if he feels it's plausible as a cause of T, it is.
Your having 'flu and not noticing the symptoms sounds interesting. One symptom of 'flu is that the eustachian tubes clog up and pressures change between head and inner ears. There might be a differential pressure issue going on in your head somewhere, i.e. your aural system has stopped balancing the pressure between your head and the outside atmosphere correctly for some unknown reason.
Not all conditions show up on MRIs or CTs, unless the radiologist really knows what they're supposed to be looking for or is gifted enough to think outside a the parameters of the scan ordered. For example, a cerebrospinal fluid leak won't show up easily. It has to be a very special scan examined by someone who really knows the signs. Mind you, if you don't have a constantly runny nose (watery drip) or a really fierce chronic headache, a CSF leak or too much CSF pressure is unlikely.
My T began in 2018. It took several years for me to habituate to it. I have done and, oddly enough, it now seems to have calmed as a result, though it can still flare when the fancy takes it, though it does not generate the same frustrated fury in me that it used to.
One thing I've found helpful is an hour once fortnightly of deep tissue massage of my neck and shoulders. That and craniosacral therapy combined seem to relax me nicely and soften the cement that passes for my neck muscles. Massage might address somatosensory T, where the problem is not with the ear, but is (as you hypothesize) with the neck.
What about cervical-release exercises, particularly the one where you draw your chin to your chest but keep you head upright and hold for 5 seconds, five times. It opens up the cervical vertebrae? Here's a website I came across that has several good neck exercises to release muscle tension, 'floss' nerves and strengthen neck muscles generally:
These should be done daily. My view? Try anything to see if it will relax you without harming you. Avoid osteopaths, chiropractors and the like.
You say your problems began overnight. A final word then about pillows for the head at night. One pillow if sleeping on the back so as not to strain the neck, two if side-sleeping and avoid sleeping on the front completely. An extra pillow under the knees will relieve tension on the back if sleeping on the back. A pillow between the knees will relieve tension on the hips if sleeping on a side. Be wary of the 'cervical' pillows, they can trigger as many neck aches and pains as they're meant to fix.
These are just some additional thoughts that you might like to ponder.
It's your life Untold and you have the right to make critical choices that affect you. I would neither criticize nor judge anyone in that respect. What I hope my latest offering might do is give you a few more ideas to consider, in preference to limited choice based on frustration, desperation and sheer exhaustion.
I hope one or two of the above ideas are of some use.
Many thanks. Will take your advice regarding osteopaths and chiropractors, they've already had enough money out of me for zero results.Have a good day.
Hi Untold, I'm sorry to read about the difficulties that you're encountering - you've seen a lot of medical personnel and alternative practitioners and not found the answers that you're seeking.
I would say, in the kindest way that I can, that your reluctance to consider talking therapy might be working against your best interest. You mention that you are a 'tell it like it is' guy and with that in mind, you may understand why people may mention approaches like talking therapy to give you some options to help you cope with a condition which doesn't have a readily identifiable cause.
If one of the best ways to diminish the impact of tinnitus is to tackle the panic, low mood and frustration it can cause, then talking therapies are probably the most effective way to do that.
I think many of the people in the thread would suggest that depression and frustration are apparent in what you're writing - people who are not feeling those emotions and having those thoughts generally don't end their posts with sentiments about praying for a swift and painless death.
I'm no psychologist but I can identify stress in the language which people use and the ideas they express - you have reasons to feel stress, as you've not been able to identify a cause for your tinnitus, so I'm not going to sit here and tell you that you're being irrational.
What I'm honestly wondering is are you tackling the most immediate problem - you've previously identified halving your distress as a good outcome in this thread but then in another post reject the relevance of healthcare services which are set up to support people who are struggling mentally with the impact of health issues.
I won't say that there is a contradiction there but it would be food for thought - if there is a possibility that your mood could improve, might your tinnitus distress also seem easier to cope with? Are you focussing on one issue which can't be easily explained at the expense of another issue where there are approaches which can help?
Hi Pat.What's with this talking therapy? How can it possibly help? At this very moment my head is ringing of the scale. I've spoke to ENT professionals who know less than me on the subject. That may be hard to believe but I've run rings round a few. Ironically that's not what I want, I want them to know shit loads more than me so they can fix it or at least give me some form of help, which nobody has managed to do so far.
Most, if not all cling to the 'hearing loss' issue and show you the door, this is not my issue.
One of my issues as a result of T is ETD., when I mentioned this to an NHS tinnitus ''specialist' she slyly googled ETD, hoping I wouldn't notice. The moment that happened I knew I was on my own.
I asked a specialist at UCH London about whether I could have a sub type of Somatosensory tinnitus called Cervicogenic tinnitus, it's causes, any treatments that may help and she swerved the question like I was speaking a foreign language. I have no faith whatsoever in the NHS regarding T. I'd rather have a brain tumour, because they know how deal with them.
After reading an NIH article about a guy who had similar symptoms to me, I'm trying what helped him. It involves wearing a cervical collar for periods throughout the day. It's not working yet, but I'm gonna persevere.
I also need the help of an orthopaedic expert but my GP says they can't refer to orthopaedics for T, so I'm a bit screwed.
The last few days has been pretty bad, spike wise. Currently throwing Amitriptyline down my neck like it's going out of fashion, doesn't help, but my GP reckons I should stick with it.
Not sure how this will end. I'd give up a limb for this fucking torture to end.
just a quick note to advise you that amitriptyline is a known trigger for T. Many drugs are T triggers, but amitriptyline is thought to be one of the worst. I had to come off it many years ago when it sent my T into overdrive, screeching on top of constant thrumming. Try drinking Imperial Pu Erh tea twice daily instead, to see if that helps. It's a fermented tea that has phytochemicals like gamma-aminobutyric acid (GABA), which has relaxing effects and contributes to lower stress levels. I suggest not drinking Pu Erh tea if still taking amitriptyline. Also, avoid caffeine. If the cervical collar does help, think about getting a regular good neck massage too as well as neck exercises. Keep looking for the right combo for you; don't give up yet.
Hi Bridgeit.Cheers for that. My GP had me on it a year ago but it did nothing. She convinced me to give it another try, starting on 10mg a day and going up to 20mg a day in the second week, 30mg a day in the third week etc. and take it up to 50mg. I'm at the 40mg stage, once again they've been of no help, so they're going in the bin tonight.
Whoa! The advice is to withdraw slowly from amitriptyline. Check with your GP to see what the weaning-off protocol is. It might take a couple of weeks to a month to bring your system back down from the medication. If you're on 10mg, you can dump it quickly, but above that, easy does it!
Fundamentally, amitryptaline is an anti-depressant, so it has a place as part of a mental health treatment programme although not all anti-depressants affect people in the same way. What they may help people they are effective for to do is to emotionally regulate enough for other treatments like CBT, acceptance and commitment therapy etc to become more straightforward to engage with.
In the midst of panic and despair we find it difficult to know how talking about a problem can help us to cope with it differently (I won't say better, as that implies that folks are not doing their best to cope with a stressful situation).
There is something of a leap of faith going on with medication and talking therapies - we may not believe that they can work for us because we're in crisis, but if something helps out of that state of crisis, we might need to be open to treatments like talking therapies having the potential to help us put issues like tinnitus into a context which we find more manageable and understandable.
If that anti-depressant doesn't work for you, another one may prove more helpful and not all meds have the ototoxic effect, nor the reported triggering effects for tinnitus which are often discussed online.
Hi untold, could it be Minor's Syndrome or sometimes called Superior canal dehiscence syndrome? I come across this when trying to find an answer for my own ear issue. Thought some of your symptoms matched, like the walking thing? I too have thought about how can i say goodbye recently due to this ear problem.. know you are not alone! I actually just want to cry right now.
Hi Sian. Thanks for your imput.Had a read up on Minors syndrome. Like most things involving tinnitus, I end up at a dead end. Some symptoms fit and others don't. Just like every visit to every doctor or ENT so called specialist I get nowhere and still find it unbelievable that in this day and age there is zero help. I'm gonna mention Minors syndrome to the ENT specialist when I have my next telephone appointment. That's on 10/02/26, so I'm not expecting much.
2026????!!! Christ that doesn't give me any hope then, I take it that's nhs? I agree with you, and reading everyone's experiences online I'm not expecting much either. It's so shit. Like you say all the technology nowadays and there's nothing anyone can do. But I will agree with the tmj thing. I'm a dental nurse and no word of a lie we had a patient in last week who said her tinnitus stopped after having a tooth extracted. How crazy is that. Any teeth giving you trouble by any chance?
Hi Sian, no teeth problems, no jaw or hearing problems. My 2026 telephone appointment is NHS. I did see a consultant privately who I was going to see as an NHS patient to give him a heads up but that was pointless and yielded no results. I've seen, supposedly, Britain's top ENT consultant and spoke to him on the telephone in July who said he'd get me in the hospital again for another face to face. Still haven't heard anything. Also saw the Maxiofacial people and had x-ray for jaw in July, no problem with jaw, they said they would refer me to King's, (haven't heard anything yet) still waiting. I realise there are waiting lists but I would at least like to hear that I'm in the system and be given a date for a face to face for one of these appointments.
I either have ETD or more likely a form of somatic or Cervicogenic tinnitus but all I know is this screaming buzzing/hissing, in the left side of my head that never stops, is driving me insane.
This will be my third Christmas in this state of complete distress. Will probably be my last, I really can take much more.
Had all the drugs available, seen an osteopath, a chiropractor, acupuncturist, and a physiotherapist. (all ridiculously expensive) Nothing works.
My problem is not down to HLIT, it's a physical issue. Why they haven't even got an inkling of an idea is baffling and annoying and a total mystery.
I dope myself up with sleeping tablets to get a couple of hours of sleep but then wake up to another day of torture.
Hoping a small comet will make its way through the atmosphere and pick me out personally to end this ridiculous condition.
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worse tinnitus spike ever
Eustachian Tube Dysfunction Fluctuations?
Early days. What might have caused my tinnitus? A Salbutamol inhaler, a wisdom tooth extraction?
