Hello, my name is Dan Bull and I’m a professional musician. I am in rather a desperate situation and was wondering if you could help, or know someone who can.
Two years ago I contracted a middle ear infection from a common cold, and since then have had a number of complications which have not been adequately explained or treated by the numerous ENTs and specialists I have consulted since. I really am at my wits’ end, am getting very little understanding from the doctors I’ve seen, and would be absolutely prepared to get involved in clinical trials, experimental treatment or ANYTHING that might help fix this and get my life back on track.
DETAILS OF CURRENT SYMPTOMS
There are currently four main symptoms I am struggling with:
1. EAR POPPING – I hear a clicking and popping sound in both of ears when swallowing, yawning, talking. Initially it only happened in my left ear but has spread to the right ear. I am almost certain that it is my eustachian tubes making these sounds. Sometimes this popping sound comes from my right nostril too – which I assume originates in the other end of the eustachian tube. [most likely diagnosis – eustachian tube dysfunction]. These sounds are often loud enough for other people to hear. I have made an audio recording of this phenomenon on two seperate occasions.
2. JAW CRACKING – I have a feeling of tightness in my jaw on both sides. There is a clicking / Scraping / grinding sound and sensation when I eat or often when I talk. This is more frequent and severe on the right side. However, the left side also makes a dull “clunking” sound and sensation on opening the jaw. I find it difficult to eat food now – it is uncomfortable to open my mouth wide enough for a fork or spoon. Unable to eat such food as apples or chewy sweets. [most likely diagnosis – temporomandibular joint dysfunction]
3. EAR SPASMING – My right ear has started “fluttering” or “crashing” or “spasming” often triggered by certain volumes or frequences such as someone coughing or when I say certain words. The ear feels constantly “full” or “tight”. There is a ticklish / irritating sensation in the same place when I move my jaw. [most likely diagnosis – hyperacusis / tonic tensor tympani syndrome]
4. NECK CLICKING – Each time I take a footstep, I hear between one and three high-pitched clicking sounds at the base of my skull / top of my spine. I also hear a lot of crunching, grinding and popping sounds when I move my head, even slightly. [most likely diagnosis – crepitus]
I believe they are all connected to some extend and probably share a causual factor. What limited information I have found online also suggests connections between the various symptoms, but not necessarily all of them together.
TIMELINE OF SYMPTOMS
PRIOR TO FEBRUARY 2013 – No problems with hearing, or ear problems of any kind.
FEBRUARY 2013 – Contracted common cold, resulting in infection in left ear. Inflammation, glue ear, eustachian tube popping. Detuned hearing.
MARCH 2013 – Symptoms of infection mostly cleared up. Fidelity of hearing returned, and been good since. Occasional mild popping in ear.
MAY 2013 – Eustachian popping sound returned in same ear, much worse. Hppens when swallowing and at random intervals.
JUNE 2013 – Sarted noticing a high pitched clicking or popping coming from either the pharynx or top of spine whenever I walked or moved suddenly.
JULY 2013 – Eustachian popping symptom spread to my right ear – loud popping in both ears when swallowing and at random intervals.
AUTUMN 2013 – “Middle clicking” increasing in severity. Each footstep now causes several clicking sounds between my ears. Lots of crunching and grinding from top of neck/base of skull when moving head.
WINTER 2013 – All symptoms worsen and happen more regularly. Jaw (TMJ) symptoms begin first one one side and then on both sides. Clicking and grinding when moving jaw.
SPRING 2014 – TMJ symptoms became much worse – used to happen once every week or two, now happens every day, every meal, every conversation, any time jaw is moved.
OCTOBER 2014 – all symptoms have become worse once more. Not only can I hear the eustachian popping sounds but I can feel them – a sensation somewhere between “ticklish” and “uncomfortable”. Feels very much like small bubbles of air/pressure moving their way back and forth around inside my ears/nose.
NOVEMBER 2014 – my right ear has started “fluttering” or “crashing” often triggered by certain volumes or frequences such as someone coughing or when I say certain words. Feels very different to the eustachian popping, much more bassy and muted. This symptom has gotten progressively worse throughout November. From reading about symptoms suspect tensor tympani problems.
DECEMBER 2014 – the tensor tympani problems have become more and more severe. My right ear goes into spasm whenever there is a sudden sound, even if that sound is relatively quiet.
HOW IT AFFECTS ME
The progression of the symptoms described above have caused psychological problems for me too: stress, anxiety, feelings of depression and hopelessness, and have become very jumpy. I shy away from situations involving sound now. I no longer listen to music, and I talk more quietly and infrequently. I rarely smile.
For additional perspective, I suffer from a number of complex eye problems after my eyes were damaged during a surgical operation in 2008. I always took solace in the fact that at least my ears were still good, and that I could absorb myself in my music.
However, as a professional musician and vocalist, my work has been affected in a serious way. Moving my larynx, singing certain notes or pronouncing certain sounds triggers my symptoms immediately, which causes physical discomfort and distraction. I am still capable of making music, but it is now a struggle rather than a pleasure.
I have seen so many specialists now. Most of them disagree on the cause of my symptoms, some to the extent of considering them psychosomatic. I am repeatedly told that I need to be patient, that “these things take time”, and given such platitudes as “just ignore it”. This attitude in itself is crushingly disheartening. This is perhaps the biggest struggle I’ve faced in life yet and the professionals I consult treat it as a mild inconvenience.
A few years ago I was beaten up by a gang of thugs and hospitalised with a number of lacerations and injuries. The pain I went through then is absolutely nothing compared to the daily torment I now experience thanks to these symptoms. I would gladly go through such a beating again in exchange for the removal of these symptoms.
Any of these symptoms individually has been known to people to depression, thoughts of suicide, quitting their jobs, and generally reduced quality of life. I have ALL OF THEM ALL THE TIME.
Meanwhile, I’m taking solace in this quote from actor RJ Mitte, who has cerebral palsy. Of course, my condition is nothing like his but his perspective is a positive one and makes me feel I can cope with my own health problems, for now:
“I believe disabilities are knowledge and we need them to understand more about ourselves and what we are able to do with our lives.” – RJ Mitte
WHO I’VE SEEN ABOUT IT
1. EAR SYMPTOMS
– Numerous general practitioners (Farrier House Surgery, Worcester; Greenridge Primary Care Centre, Billesley)
– A rude audiologist woman – name unknown (NHS – Worcester Hospital ENT dept) – I was referred to her by Dr Cottrill at Farrier House Surgery. She performed a hearing test and middle ear pressure test. Results came back normal. She told me there was no problem because the results showed no problem. Would not accept my complaints as valid. She just kept pointing to a graph on a piece of paper saying the results were “normal”.
– ENT consultant – Mr Steve Lewis (NHS – Worcester Hospital ENT dept) – Was helpful and sympathetic. Performed endoscopic examination. Diagnosed rhinitis, eustachian tube dysfunction. Prescribed Flixonase nasal steroids and sterimar nasal spray, and lots of patience. Claimed with certainty that symptoms would go away by themselves.
– ENT consultant – Mr Martin Porter (NHS – Worcester Hospital ENT dept) – performed rudimentary examination of nose and throat. Could not detect anything wrong, and then told me that it was more likely I was being “oversensitive” because I’d had an ear infection and was thinking too much about my ears. He said the issue was a “mental” one. I left this consultation angry and unsatisfied. My dissatisfaction was justified later by my consultation with Mr Mian who actually bothered to listen to my ear as I swallowed and clearly heard the symptom happening.
– ENT consultant – Mr Richard Irving (BMI The Priory) – Private consultation paid for my myself. Explained all symptoms and he seemed mystified. Performed basic examination of nose and throat. Could not detect any problem. Hypothesised that the problem could be to do with nerves spasming. Prescribed amitriptyline.
– ENT consultant – Name not known (NHS – Worcester Hospital ENT dept)
– ENT Consultant – Dr Mohammed Mian (BMI Edgbaston) – Private consultation paid for by myself. Performed basic examination of nose and throat. Leaned forward and listened to my swallowing and immediately heard the popping symptom I had been describing. Diagnosed deviated septum and palatal myoclonus. Suggested that my symptoms were caused by a variety of contributing factors and not to do with the initial ear infection.
– Hearing therapist – Jan Berry (NHS – Kidderminster Hospital) – Referred by Mr Steve Lewis. Suspected hyperacus, which I did not have at the time but coincidentally appear to have developed later.
2. JAW SYMPTOMS
– Numerous general practitioners (Farrier House Surgery, Worcester; Greenridge Primary Care Centre, Billesley)
– Dentist (Galin Dishev, Oasis Dental Care, Worcester) – told me that the symptoms were normal, that pretty much everyone has them, and that they would go away by themselves. Suggested ibuprofen.
– Dentist (Dipesh Parmar, Acorn Dental Practice, Moseley) – referred me to Birmingham Dental Hospital. Suggested jaw exercise. Recommended oral splint.
– Dentist (NHS – Birmingham Dental Hospital) – suggested jaw exercise, ibuprofen and eating soft foods. Recommended oral splint.
3. ASSOCIATED ANXIETY / DEPRESSION
– Numerous general practitioners (Farrier House Surgery, Worcester; Greenridge Primary Care Centre, Billesley). Seen several GPs and gateway workers about the detrimental effect on my mental health. Have definite feeling of being batted back and forth between people who would prefer my problem to be someone else’s problem. Totally dissatisfied with level of care.
– Counsellor – Dawn Theophilus – Dawn is very sympathetic to my health problems and is currently helping me to learn some coping strategies that I can use. However, she believes it’s clear that my anxiety and depression are directly caused chiefly by my physical symptoms, and that once they are treated my mental health will be much improved.
POSSIBLE DIAGNOSES
1. EAR POPPING
– Glue ear (diagnosed by numerous GPs)
– Rhinitis (diagnosed by Mr Steve Lewis)
– Eustachian Tube Dysfunction (diagnosed by Mr Steve Lewis)
– Tinnitus (NOT diagnosed, but I have been mistaken for having tinnitus by hospital staff several times now)
– Hyperacusis (hypothesised by Jan Berry. I am 99% sure that this the ear popping is not a symptom of hyperacusis, however I have developed symptoms matching hyperacusis since then)
– some kind of unusual nerve problem (hypothesised by Mr Richard Irving)
– Palatal myoclonus (diagnosed by Mr Mohammad Mian)
– Myoclonus of the tensor veli palatini muscle (TVPM) (hypothesised by Mr Mohammad Mian)
– An ongoing bacterial infection, which would explain why the symptoms spread from the previously infected ear, across and into the other ear, and why it has slowly worsened over 2 years. Could the nasal steroids have contributed to this?
– Patulous Eustachian Tube
– I’m going mad
2. JAW CRACKING
– Temporomandibular joint dysfunction (brought on by inflammation associated with the ear popping?)
3. EAR SPASMING
– Hyperacusis
– Tonic tensor tympani syndrome (TTTS) (brought on by inflammation associated with the ear popping?)
4. NECK CLICKING
– Crepitus (brought on by inflammation associated with the ear popping?)
TREATMENTS I HAVE TRIED
1. EAR POPPING
– Flixonase nasal steroids, (Prescribed by Mr Steve Lewis)
– Sterimar isotonic nasal spray (Prescribed by Mr Steve Lewis)
– Otovent glue ear treatment (Prescribed by Mr Steve Lewis)
– Amitriptyline (Prescribed by Mr Richard Irving)
– Avamys / fluticasone (Prescribed by Mr Mohammad Mian)
– Daily antihistamines (recommended by Mr Mohammad Mian)
– Decongenstant (Sinex, Sudafed) (recommended by Mr Steve Lewis)
– Probiotic supplements with K12
– “wait and it will eventually go away by itself” (recommended by Mr Steve Lewis)
2. JAW CRACKING
– (recommended by dentist at Birmingham Dental Hospital) Daily ibuprofen
– (recommended by dentist at Birmingham Dental Hospital) facial massage
– (recommended by dentist at Birmingham Dental Hospital; Dipesh Patel) jaw relaxation exercises
3. EAR SPASMING
– None yet
4. NECK CLICKING
– None yet
5. ASSOCIATED ANXIETY / DEPRESSION
– Antidepressant / anxiety medication. (Citalopram; Fluoxetine) (prescribed by general practitioners)
– Counselling / learning coping strategies
TREATMENTS I AM CONSIDERING
1. EAR POPPING
– Botox treatment for palatal myoclonus (recommended by Mr Mohammad Mian)
– Surgery to correct deviated septum (recommended by Mr Mohammad Mian)
– Balloon dilation of eustachian tube
– Laser surgery of eustachian tube
– Grommets
2. JAW CRACKING
– Oral splint (recommended by Dipesh Patel)
– Osteopathic or chiropractic treatment
– Jaw surgery for TMJD
– Bowen Technique (anecdotal recommendations)
3. EAR SPASMING
– White noise therapy (recommended by Jan Berry)
– Valium (suggested by Jan Berry)
– Tenotomy of the tensor tympani and stapedius tendons
4. NECK CLICKING
– Osteopathic or chiropractic treatment (anecdotal recommendations)
5. ASSOCIATED ANXIETY / DEPRESSION
– Hypnotherapy
WHAT ALLEVIATES THE SYMPTOMS
So far the only symptom that has been alleviated has been the popping in my left ear upon swallowing. This alleviation has had three seperate specific and temporary causes:
1. Eating spicy food. On two occasions I have eaten a spicy curry and shortly afterwards had temporary relief from the popping.
2. Yawning. Occasionally, after I have yawned, I will then be able to swallow once or twice without the symptom occurring in the left ear. The amount of relief provided in this small moment is significant. The symptom almost always returns after three swallows.
3. Common cold. Since the onset of symptoms I have had two common colds, and both times, the ear popping became delayed – it happened a couple of seconds after swallowing instead of immediately upon swallowing.
HOW CAN YOU HELP?
If you think you can provide insight or help solve my problem in some way, or if you know someone who can, please get in touch on my business email address: freshnut@live.co.uk
Thanks so much,
Dan x
