Suddenly, out of the blue, everything changes
Saturday 23rd January 2016 – I’m fit, well and healthy. I’m a bit stressed at work and I’ve just put my flat on the market but I’m feeling unusually happy. I almost skip down to the cashpoint. I feel well rested and alive.
A plumber comes to service my boiler and by 10.30am my left ear feels funny. I start googling ‘what’s wrong with my ear’. It feels like a train is going through my head. I try the diving technique of equalising my ears but it doesn’t help. The plumber wants to show me something, I can hardly stand up, I have tunnel vision, I have to prop myself up against the kitchen counter.
I go to the pharmacy. It’s the same walk to the cashpoint but this time I’m staggering and swerving like a drunk person. The pharmacist’s voice is distorted, the bass is too loud, it’s blasting out but at the same time it’s muffled. I lean across the counter like I’m drunkenly going to kiss him but I’m only trying to work out what on earth he’s saying.
The pharmacist sends me to the GP’s out-of-hours service and the next few hours are incredibly weird. I’ve entered the Twilight Zone with a different dimension to all sounds and sights. The light is translucent, everything is too bright. All sounds are amplified, the loudest sound possible on a nightclub’s sound system. And I’m crying, shouting at everyone to shut the fuck up, to stop moving, to stop creating any sounds.
There’s a baby in the waiting room making normal baby gargling sounds. I stare daggers at the mother; it feels like the baby is trying to murder me. A doctor walks into the waiting room, he’s wearing leather shoes and every step he takes sounds like a bomb exploding. I cover my ears with my arms and scream ‘aargh, stop walking! Stop making that sound’. It’s too much and I become a rag doll sliding off the chair and falling onto the floor.
I’m now sent to A&E. I take a black cab and feel momentarily better, the sounds aren’t so distorted and I can hold a conversation without freaking out. I see a doctor and we talk about the junior doctor’s strike. The doctors strike – really? An hour ago all sounds were making me collapse but now I’m having a political conversation. Why on earth I am trying to convince him, and convince myself, that I’m okay?
He prescribes steroids and anti-viral medication. He sends me home saying the Ears Nose & Throat hospital will phone me on Monday. I am surprised that I’m not admitted overnight and afterwards I wonder if I hadn’t been momentarily more competent, if I hadn’t have talked about the doctor’s strike, would the treatment have been different? Would I have been admitted into hospital? Would I have been saved from what was to follow over the next year?
Vertigo & bad decisions
The next day the vertigo and dizziness start. It is the strangest sensation. I live alone and spend 48 hours feeling like Leonardo DiCaprio in the Wolf of Wall Street tripping on Quaaludes. I’m standing in my flat, I can see my flat still has a hard wooden floor but the light is foggy and it feels like I’m on a cliff’s edge with a sheer drop in front of me. There’s a deafening roaring sound in my ear making my head swim.
I have to hold on to something, my legs are like jelly, I’m breathing rapidly, I’m panicking. I reach a wall. Phew I’m safe. I’m now pinned to the wall and I’m petrified. I’m caught in two realities – I’m in the safety of my home but all my senses are telling me that I’m in danger.
This feeling of vertigo kicks in anytime I move my head. I place chairs around my flat so I have something to hold onto. Even lifting my head off the pillow triggers a series of sensations where I feel like I am falling to my death.
I have a temperature, my eyes are so heavy, I want to sleep but I don’t know if I’m going to wake up.
I discover something about being unwell: ill people make bad decisions. My brother and his girlfriend are in central London and offer to come over but I send a text saying not to bother. My flawed logic: I’m too unwell; there’s nothing they can do; I’ll be rubbish company; they’ll be bored. But I also hate the idea of them going home and being worried about me.
I look back and think ‘Really? You crazy, stupid girl’. Jess is a nurse, she’s worked in A&E departments, she would have known what to do. But all I could think was I just need sleep, that the hospital would phone me tomorrow and I’d be okay.
Ill people make bad decisions. I wasn’t going to be okay in a few days or even in a few months. I didn’t know it yet but everything had changed.
~~~
I am Rapunzel 
Wow how sad that life changes in the blink of an eye. But such a positive purpose for the website. How are things now? xx
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Thank you so much for getting in touch! I’m doing so much better. My healing journey has taken me to India where I’ve met some amazing healers & I’m getting stronger every day 🙂💪
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Such a totally original, well written, distressing but hopeful read. I am sure it will help hundreds (thousands?) of suffering people who have long given up. I will continue to read until the end! I am one of the believers in Sharing when intended to help. Anything.
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Isabel, thanks so much for sharing your story. I linked here from the Pure Tinnitus podcast. My low T turned to a loud screech in May 2020 (great timing, right?) and I’ve since been on a journey of healing as well. I have moderate hearing loss so lots of folks say there’s no hope for me to kick tinnitus, too (I know what you went through there!). I most identify with your idea that we have to reinvent ourselves, and that you no longer feel (felt?) like yourself. I no longer feel like the light, healthy person I was before all this started; I know I am someone else after tinnitus, hearing loss, and a Hashimoto’s diagnosis, but I’m on the journey to discover what the healthy version of that person looks and feels like. Were you able to find your new, healthy person? Again, thanks; you’re right, we need more “success stories” out there, as well as more visibility for more research! ❤ Megan
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Hi Megan, thanks for getting in touch. I’m so sorry you’re experiencing tinnitus – it is such a cruel condition. It is great to know that my story has given you a bit of hope & inspiration. In the interview I stupidly forgot to mention that I now wear a dental brace to realign my jaw and fix my TMJ problems. This is definitely helping my tinnitus and fatigue so it is worth looking into.
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You’ve hit the nail on the head about finding my new self. I’m simply not the same person and finding a place in the world for my new, wiser but slower self has been just as challenging as overcoming tinnitus. I desperately wanted to reinvent myself and have a different, more creative life but Covid has made that impossible. I’m once again trapped in my flat and my hair grows longer & longer not because the noise outside triggers crippling tinnitus but because of a global pandemic. You couldn’t make it up. I’m even back doing the same unfulfilling job. I was unemployed when Covid hit & was trying to make a big career change but, with the economy down the pan, I had to accept a contract in my old field. My external life is exactly as it was in 2016 so I have to be content with the changes to my inner world. I no longer get stressed about work, family or life in general. Illness has given me so much wisdom, perspective, inner strength, and knowledge about who I am. I’ve discovered a creativity within me that I find truly fulfilling. I’m also obsessed with researching health & wellbeing – I need to know what made me so ill and how to help others overcome their tinnitus.
One day the pieces will come together and my external world will reflect my new inner self but, for now, I continue to be Rapunzel self isolated in my flat but thankfully I’m so much happier and I’m no longer tortured by tinnitus.
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