“Without tinnitus bedtime would no longer be a battlefield or something to fear”

As part of our Spring Appeal, Fae writes about how her tinnitus led her to feel suicidal after a mental breakdown and how, now, she won’t give up hope for a cure for everyone living with tinnitus.

“Without tinnitus bedtime would no longer be a battlefield or something to fear”

Content warning: this blog discusses suicidal feelings.

The lines are blurred as to how my tinnitus started exactly. A lot of things that it could be attributed to happened quite quickly one after the other. There were some loud nights outs dancing after the ease of lockdown, I got Covid for the first time, and my GP was treating me for anxiety and depression like many other people during the pandemic.

“At first, my tinnitus was this occasional chiming noise that I didn’t really notice.”

At first, my tinnitus was an occasional chiming noise that I didn’t really notice. It would come and go for a few hours at a time but I never felt threatened by it. To be honest, I didn’t even know what tinnitus was.

Then, in September 2021, just as the world was starting to get back to normal, my whole life was shattered. I had a complete mental breakdown. It hit me like a freight train and I had no idea it was coming.

Looking back, I can see now that I was going downhill for months. I was just surging forward until I couldn’t go anymore. Suddenly, I was stuck in this place of debilitating fear and darkness. I stopped working and haven’t worked properly since, I pulled out of the flat I was buying, and I was simply terrified all the time.

My only escape from what I was going through was sleep. It was the one safe place I had where my mind and heart weren’t constantly racing. I could close my bedroom door and just be in this small, quiet sanctuary. But then tinnitus came.

“The noises became more and more intrusive”

Overnight, I became a shell of myself. I was exhausted because I wouldn’t sleep for days on end. I couldn’t think straight because of the constant, never ending noise. I couldn’t surf anymore, go to the gym or see my friends because I was so tired all the time.

The noises became more and more intrusive and eventually, nearly one year later, I made a plan to end my life. Over time, I’d become terrified of being on my own because my thoughts were so dark but I’d become so hopeless I felt like I couldn’t live this way anymore.

I got in my car and began to drive. I was driving to my mum’s house because I knew she wasn’t there but on my way I stopped at a wishing well. I met a tarot reader there, just by chance; she was so lovely and she could see I was distressed. She gave me a tarot reading and it completely distracted me. Making that stop saved my life.

“Tinnitus has made bedtime a battlefield.”

Sleep is where I struggle most with my tinnitus. It was something that used to be so easy, a place of escape when I wasn’t very well, but now it’s become this huge deal every night. Tinnitus has made bedtime a battlefield.

Normally, my tinnitus is a high-pitched ringing tone but sometimes, when I get a cold for example, there are all these other noises all around my head. They sound like a spaceship or a fridge. It’s like two checkout counters having an argument. You can’t escape from it and without medication, I don’t think I’d sleep at all.

“The thought of sharing my bed with someone, with potentially having my sleep disturbed is truly terrifying.”

I have such intense fear in my heart about sleep that it stops me from having a relationship too. The thought of sharing my bed with someone, with potentially having my sleep disturbed is truly terrifying. How could they understand my struggles? At times, I get scared that tinnitus has made me ‘undesirable’ too and I think ‘Who would want to take this on?’.

I do feel that tinnitus has stopped me from doing things I love. I’ve tried not to let it, but it has. I haven’t worked properly since September 2021 because I can’t guarantee I’ll be able to function the next day after a rough night with my tinnitus. One bad night’s sleep makes me withdraw into myself. Before this, I did personal training, housekeeping, digital marketing, a bit of festival work. I love being busy. I never dreamed I’d be off work for so long.

“It was wonderful to speak to someone who knew what I was going through.”

I’ve phoned the Tinnitus UK helpline a number of times because, at first, I was in a hell of state trying to make sense of this thing that was battering me when I’d never even heard of it before. The lady I spoke to was so nice and reassuring.

Tinnitus UK also set me up with a befriender, Chris. It was wonderful to speak to someone who knew what I was going through, who’d been where I was and had come out the other side. We’ve been in touch for over a year now and I still sometimes call the helpline or speak to Chris whenever I need a bit of extra support.

“I felt connected rather than isolated for the first time in months.”

In 2022, I took part in an online research trial by the University of Leeds. It was a study looking at mindfulness and tinnitus. At the time, my tinnitus was still so new to me that I didn’t have any hope or expectation of what the trial would bring or if it would make a difference but, actually, I became quite reliant on the meditations they asked us to do because I would use them to fall asleep.

Taking part in the trial, I felt supported. Here were other people who understood what was happening to me, I felt connected rather than isolated for the first time in months.

A cure for tinnitus

In the last six months or so I’ve started doing psychotherapy and CBT for tinnitus – it’s been really helping. Colonic hydrotherapy has helped me too – I truly believe this has saved my life. I’m trying and I’m doing really well and I think it’s ok to be proud of that. I know I shouldn’t use the word ‘fight’ but that’s what I’m doing. I’m fighting and I won’t give up.

To get rid of my tinnitus, to see the end of it, I’d do just about anything and I know that other people feel that way too. That’s why I’m taking part in this appeal. Nothing would change my life more than not having tinnitus and I truly believe there is a way to cure or reverse tinnitus – we just haven’t found it yet. But with more research into it, we could.

A gift from you could fund the next breakthrough in tinnitus research that could find new and better treatment options for me and the countless others like me.

A cure for tinnitus would change lives. By donating to our Spring Appeal, you could help make a brighter future possible.