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People of HealthUnlocked: Tinnitus: A Tyrant and Teacher

SaskiaHU profile image
SaskiaHUHealthUnlocked
11 Replies

Around December I developed tinnitus, or ringing in the ears, as a side effect to medication that I didn’t want and didn’t think I needed. At the time I was in denial – if I don’t give it attention then surely it will go away. So I waited…and waited…and whilst I waited, it seemed to erode parts of me at a time until I became a person I no longer recognised.

At first it was just the impact of sleep deprivation, being woken up by the noise, and the difficulty of going to sleep – a horrible cycle of being tired from lack of sleep due to tinnitus, followed by worse tinnitus caused by lack of sleep. Even when I did sleep well, I found concentrating at work, and socializing in evenings, incredibly difficult. I postponed meetings, cancelled social engagements, and generally became withdrawn.

A lot of the things that keep me well, mostly yoga and meditation, involve silence. When I first developed tinnitus these became excruciating to the point where I gave up meditation completely and left yoga classes feeling distraught.

Together, the lack of sleep and loss of my wellbeing anchors really changed the person I was, until I began to feel the depression seeping in as I hid under the duvet, feeling isolated from my friends and disengaged from social activities. The tiredness, anxiety, and lack of concentration made having a “normal life” a distant memory.

My GP suggested I was having a grief experience, which really made sense. I mourned the loss of silence, and the loss of the joy of falling asleep and of waking up – things I use to enjoy that were now incredibly painful.

I did my best to keep myself distracted, this was the advice I’d read about online, to ensure there is constant background noise, or to listen to something you’re interested in, but for an introvert who needs solitude, this became utterly exhausting.

Within a few weeks my personality had completely changed. I was so distressed I made numerous calls to the Samaritans’ suicide and crisis hotline. I screamed and cried to the volunteers, lost my temper with my neighbour, became defensive with colleagues, had more road rage than I want to admit to (noticeably after Pilates), and managed to break my door. This was not the person I used to be.

My lack of meditation and silence meant I was no longer able to relax, resource and nourish myself. It meant I was always in “drive” mode, constantly doing anything to avoid being in the present moment. I was over-stimulated and my attention needed a rest.

An especially difficult aspect was feeling like I couldn’t talk about it to anyone. If I said I had tinnitus, most people would start telling me about theirs. I struggled to explain how awful it was and how much it affected me, and when I did try to communicate the impact to friends it sounded like I was in competition with them over symptoms. I found myself desperately wanting empathy and understanding, not finding it, and becoming further isolated from my friends.

I discovered the Beltone Tinnitus Calmer app, recommended by my GP, which gave some relief. My silent mornings were replaced with bird song from the app, and I gradually went back to meditation by playing the sound of rain through the app whilst focusing on my body and breath. Although the app helped to ease the distress, it was still an unwanted reminder that my life had completely changed.

My GP referred me to ENT and I joined a waiting list. In the meantime, a chance phone call to audiology offered me an immediate appointment and I was quickly fitted with a hearing aid that works as a sound mask – the loud hiss overplays the screeching noise, which takes away the distress. Relief!

Thanks to the sound mask, yoga and Pilates are no longer painful, and I can adjust the volume of the hiss as I need to. I can now meditate with the sound mask and am back to living a normal life again, albeit with a hiss throughout the day, screeching before sleep and when waking up, but importantly I have a good quality of life again.

In his book Tinnitus, from Tyrant to Friend: How to Let Go of the Ringing in Your Ears, author Julian Cowan Hill refers to a mindfulness approach that focuses on your personal relationship with tinnitus, rather than the noise itself. Tinnitus may begin as a tyrant, but as we get to understand it better it can become a doctor (forcing us to address trauma and wellbeing) and a teacher – as we recognize tinnitus as an indicator that leads us to manage symptoms through improving wellbeing.

Relating to tinnitus as a teacher is where I am in this journey so far. I see sleep and stress related to too much screen time as vital to managing noise levels, and I recognise my overall wellbeing as being key to how bothered I am by tinnitus, rather than focusing on reducing the noise itself.

The old me is slowly returning, recognizing how delicate life is and how quickly a small change can affect who you think you are. I still mourn the loss of silence, I still struggle to fall asleep at times, and I still wake up in huge discomfort, but thankfully it is no longer the noise that wakes me up, and I am no longer in constant distress or drowning in grief over my loss.

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Fi is a part-time yoga and mindfulness teacher in central Scotland (bodywisdom.info) and a part-time fundraiser for a community arts charity. She enjoys wild camping, hill walking, 5-rhythms dance, meditation retreats, and spending time with friends and family.

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Thank you, Fi, for sharing your journey with our readers.

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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions and wellbeing needs, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email support@healthunlocked.com to learn more.

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SaskiaHU
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11 Replies
Teaching profile image
Teaching

Thanks for sharing. I learnt a lot from your experience.

85745 profile image
85745

Good to hear your story, I have mild ringing , think it't from listening on blast to all those great rock bands from yesteryears, many from your neck of the wood, lol I sleep with a fan on to drown it out. I notice it kinda comes and goes, In my times of trouble I take it to the Lord in prayer.

in reply to 85745

My daughter told me that she has to sleep with the TV on to drown out her tinnitus.

Poshcards profile image
Poshcards

Hi, very interesting read, but can you sleep with hearing aids in, I was told it was bad for eardrums etc? x

Musical3110 profile image
Musical3110

Really enjoyed reading your story but a lot of these things are not covered in Northern Ireland which is so disappointing

Jodac8 profile image
Jodac8 in reply to Musical3110

I too have tinnitus because of my accident and have the sound masked on my hearing aid too but like postcards asked it cant be worn while sleeping but is wonderful for during the day and I live in northern Ireland and had no issues getting it in fact the ENT specialist went out of his way to get it for me as quickly as possible because of the accident I'd had

Carew profile image
Carew

Some have had tinnitus since childhood. More than sixty years.

It changes over time - both within minutes and across decades.

Unfortunately, every time I have tried anything to mask it, that itself becomes severely annoying. The best for me is human voice - often radio, sometimes podcast, or whatever.

Have just been listening to some podcasts which are offered in two versions. One with the little bits of plinky-plinky music so many come with - behind the voice as well as used to link sections. And the other which has absolutely nothing but the voice. What a blessed relief.

gsh419 profile image
gsh419

It appears my Tinnitus is related to the amount of Mucus I create that blocks up my 'tubes' so all my noises sound like engines somewhere.When I swallow I'm expecting a big plop and all will be clear but it doesn't happen let's hope my new hearing aids will mask some of the discomfort.

I feel so fortunate that in my as I drift off to sleep and in my dreams there is no tinnitus……… .at all other hours it drills away but as long as I don’t “ invite it in “ I am able to live well enough with it. … Thanks for sharing

I have had severe tinnitus for about 6 years as a result of having Vasculitis. My disease started with ear aches and sinus infection. My left side developed Patulous Eustachian tube which is just as bad or worse than tinnitus. My tinnitus comes mostly from that left side and is a very loud hissing sound like a leaky steam pipe. It was very distracting for the first few years but I guess my mind has been able to ignore it for the most part. One thing I have going for me which is bad also is that I have songs playing in my head 24/7 but that might be what's detracting from the tinnitus.

Seabob profile image
Seabob

Thank you for sharing this with us, i too grieve the loss of silence, i used to love going to bed in silence and waking up to just the natural sounds of the weather or birds, T is new for me and i have resented having to 'mask' it but know that at times it makes sense, i have become withdrawn, am off work sick due to ear pain, migraine aura and sleep deprivation, i have other health problems too but by far T has been the most challenging.

It feels cruel in that at times it goes quiet and the relief you feel is immense, and then it returns.

I feel my old self is lost for now.

Julian Cowan Hill has been a life saver and i too recommend his Youtube vlogs, he has a lovely gentle way and his knowledge is immense as he has had T and learnt various ways to live with it.

Considering how many people are affected by T it is hard to understand why generally there is very little help via NHS - i have learnt more from sound advice from here and reputable sources and am learning each day.

I wish for all of us to support each other and that no one has to go through this alone.

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