My illness presented itself suddenly in the middle of a summer night when tinnitus woke me up like an unwelcome visitor. I waited a few minutes for it to go away, but it had come to stay forever. It was coming from my left ear, sounding like a high pitched metallic/whistling noise, with some low frequency humming in the background (I find it difficult to describe).
Over the next few days or so—and to my horror—I found that some everyday activities, such as chewing, yawning, and turning my head towards the extreme left, exacerbated the tinnitus for a few seconds during which I could hear it as a white noise. Certain exercises (for example, doing press ups, hopping on one leg); insomnia; and stress also made me more aware of its presence.
There were occasions that I thought the tinnitus was pulsating, as if it had a vascular origin, but this was not a consistent feature. I also experienced other episodes during which I could hear an extremely rapid increase in volume of the tinnitus—within a few seconds it would reach a deafening pitch and I would also hear it in my other ear. These episodes—which do not have any triggers (they seem to be unprovoked/unpredictable)—have, however, been extremely short lived (lasting only a few seconds) and are, thankfully, a rare occurrence.
Being unilateral and persistent in its presentation, even after ear syringing and the removal of wax, an acoustic neuroma (a benign tumour of the eighth cranial nerve) was suspected and my GP made sure that I saw the specialist as soon as possible. He was extremely supportive, as were the ear, nose, and throat (ENT) specialist and neurosurgeon who assessed me.
It came as a shock when a diagnosis of facial neuroma was made instead (a tumour of the seventh cranial nerve), which is rare. I felt grief stricken at the prospect of facial palsy, deafness, dizziness, and loss of balance sometime in the future. I felt vulnerable and scared and this negatively affected my general health (I struggled with low mood, insomnia, headaches, heartburn etc.); quality of life; and work for about a few weeks.
What I found really helpful were the clear information offered to me (about various treatment strategies, including surgical interventions) and the empathic comments/gestures made by my doctors, distracting me from the negative aspects of the illness. These helped me deal with my fears and anxiety: “Are you a doctor? . . . That’s great, let’s look at what we know about your condition and what we can do to help you’’; “let’s not focus on the worst case scenario and the symptoms that might happen in future, we’ll cross that bridge when we get there’’; “you are always welcome to make an appointment with me to discuss any worries that you have.’’
A referral to a hearing therapist was also extremely helpful in equipping me with skills and strategies to cope with tinnitus. For example, I learnt to not actively listen for it, to avoid any undue stressors, and to listen to music/the radio at a low volume to help me ignore the tinnitus at night. Getting back to work and my regular exercise sessions at the gym were both a blessing as well.
What I did not find helpful were unconscious negative comments—some of which surprisingly came from medical colleagues who were trying to be empathic (“such a terrible illness to have’’)—and reminders by others of my condition (“how is your tinnitus today?’’), while I was actively trying to forget about it.
I feel that as a doctor who has experienced a period of uncertainty before the diagnosis, and as someone who has gone through various investigations including prolonged MRI scanning (which can be a claustrophobic experience), I can better identify and empathise with my patients.
On reflection, I also realised how easily tinnitus or other similar invisible symptoms, such as agnosia, could be missed in patients with a learning disability or dementia, as they can be unaware of the significance of their symptoms or might be unable to describe them. These patient groups can also present with a loss of everyday skills, depression, anxiety, or challenging behaviours rather than being able to provide a subjective account of their symptoms, which might lead to diagnostic overshadowing—whereby professionals attribute the symptoms to the cognitive impairment or learning disability, rather than actively investigating for alternative explanations.
Through my personal experience, I also came to realise why doctors can play such an important part in the lives of their patients. Clinicians’ accessibility, kindness, and caring attitude really can bring about meaningful improvements in the quality of life of those with incurable chronic conditions.
Acknowledgements: I would like to thank Dr J Vaghani (GP), Professor H Pau (consultant ENT surgeon), Mr Ian Robertson (consultant neurosurgeon), and Ena Martin (audiometrist/hearing therapist) for their support and professional input into the management of my condition.
This blog was written by a consultant in adult learning disability psychiatry, who also works in complex care services for Huntington’s disease in Leicestershire. He has decided to write about the importance of the doctor-patient relationship and his experience of being a patient to raise awareness of the illness he has been diagnosed with.
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.
Some online resources
-Action on Hearing Loss: https://www.actiononhearingloss.org.uk/
-British Tinnitus Association: http://www.tinnitus.org.uk/
-Tinnitus Talk: https://www.tinnitustalk.com/