Content warning
Steve’s story is a very honest and moving account of how tinnitus affected him, and how he learned to live well with it. This first section contains content that you may find distressing as it includes references to suicide and self-harm.
There are details of organisations that offer advice and support at the bottom of the page.
Steve has written a book about his experience with tinnitus which he has kindly allowed us to share. We will be following Steve’s story over the coming months.
Just before the Christmas of 2011, I woke up at home in bed, in the very early hours of the morning to a very loud screech (high-pitched whistle) in one of my ears. Instantly I knew it was tinnitus.
As a musician I’d often read about the dangers of being subjected to loud sounds for long periods. My first thoughts were “Will this be temporary, or will it go away?” I’d had temporary tinnitus before after going to rock concerts, but it would always fade away by the end of the evening. I drifted back to sleep hoping it would go away as usual.
A few hours later, I woke up to the same sound. This time I started to panic and sought reassurance from my wife. We agreed it seemed a good idea for me to go and have a bath to try to chill out a bit as this was turning into a real panic attack. Lying in the bath, all I could think about was that this was here to stay. It was so loud. How could I live with this noise for the rest of my life? How could I continue to play in the band (I had a gig in a few days)? What had caused it? Could I have a brain tumour?
I felt trapped
My wife found me banging my head against the wall in the bathroom. I felt trapped, no way out. I felt I just wanted to die but knew I hadn’t got the bottle to do it.
Now it’s a decade later, and I’m writing this from my narrow boat which I live on most of the time. I have re-married and have a wonderful life. I still play in the same band (with musician’s ear plugs!). Weeks now go by with no thought about my tinnitus. I really don’t notice it unless someone mentions it. I now understand why other people who have dealt with tinnitus will say “Tinnitus? I forgot I had that.” It is really like not having tinnitus at all until someone asks me about it. Even then, my brain will struggle to find it, but will soon forget about it again. The technical term for this is becoming ‘habituated’ to it. I don’t like this term as it is defined as reaching a point where you can ‘put up’ with it. I certainly no longer have to ‘put up’ with it.
This is my journey with tinnitus. I hope you’ll find something in it which will help you in your journey whether you have tinnitus or not. Much of what I am about to write may be helpful to those with other ailments. The word tinnitus can sometimes be replaced with the words ‘depression’, ‘pain’ or anything really which is holding you back from appreciating the gift of life each and every day.
Get help, any help
Even though this unbearable screech in my ear was preventing me from thinking rationally, I realised I needed help. What could I do? What could anyone do? I searched the internet frantically for ideas and comfort. The search on the keyword ‘tinnitus’ just seemed to bring up scams tying to flog books, CDs or magic cures. It was so difficult to find any help. My wife bought some natural products to try to calm my anxiety state down, but nothing seemed to be help. I was now in full-on fight or flight mode.
I decided that I should book an appointment with my GP to get professional help. At the very least, the professional medical track may pick up any issues like brain tumours. Being able to eliminate morbid fears would surely help to reduce my anxiety.
In the meantime, I thought long and hard about how I could cope. I found the BTA website and phoned up one of their helpline support volunteers. However, that chat didn’t really provide any comfort as the person seemed to lack empathy, or maybe it was just that I wasn’t open to any empathy in my state of anxiety.
Eventually I joined the BTA forum and wrote my first post on there. I expressed how terrible I felt and hoped someone there could relate to me. Almost immediately I got a reply. There were some lovely people on there, some going though similar stages to me and others who were years down the line with tinnitus. Just being able to talk to others with tinnitus was a massive breakthrough for me. Everyone agreed that seeking medical help was best at this stage. There was also advice on how to try to relax, although that seemed difficult for me as being in a relaxing quiet environment just made me more aware of the tinnitus.
Maybe I could help others
I decided to continue with the forum and offer up my thoughts. Although I have no medical or psychological academic background, despite my anxiety, I did find my own and other’s ‘cases’ interesting. If I could get through this, maybe I could help others get through this awful condition.
A fellow musician from the forum got in contact with me to help and offered to meet up with me in a studio to record some music with him. I jumped at the chance to meet a fellow sufferer face to face.
A few weeks later I drove down to his house in a village in Essex to meet him. His tinnitus story was a real eye opener. He showed me where he had tied a rope to the loft opening when he had planned to hang himself. Fortunately, he didn’t go through with it and as a result managed to become a very valuable help adviser and a very good friend of mine.
During that first year I continued to seek help from the BTA forum. I had an MRI brain scan to eliminate the possibility of an acoustic neuroma (a very rare form of tumour), I had counselling sessions to expose any psychological causes. I also sought help from some friends in the local church, just in case there were any spiritual dimensions to my problem! Basically, my advice to anyone suffering from an ailment is not to be too afraid to seek help, wherever you can.
We are all different. What might work for one person might not work for another. However, after my research and speaking to others, I found a number of common factors in the road to coping with, or even defeating, tinnitus. I also realised that many of these factors may help with other ailments like depression and pain.
This was a battle
One word I heard a lot from people during the journey was ‘acceptance’. I didn’t want to accept tinnitus, I wanted to defeat it. This was a battle; I was not going to live out the rest of my life ‘putting up’ with it. I wanted my life back.
I did get my life back, and more and I now see how tinnitus may have been one of the biggest gifts in my life. Next time, I’ll share some of my ‘lessons learnt.’
Sources of advice and support
We can offer support through our freephone helpline, email, SMS/text and web chat services. Our tinnitus support team has many years of experience supporting people with tinnitus and all our support services are free.
You can access our support services Monday-Friday 9am-5pm via:
Freephone helpline: 0800 018 0527
Web chat: click on the icon on the bottom right of your screen
Email: [email protected]
Text/SMS: 07537 416841
Other organisations that offer emotional support include:
CALM (Campaign Against Living Miserably)
A charity dedicated to preventing male suicide, the biggest single killer of men aged 20 – 45 in the UK.
Helpline: 0800 585858 (5pm-midnight)
Web chat www.thecalmzone.net (5pm-midnight)
Mind
Mind work to improve quality of life for suffering individuals. England and Wales, local services are available.
Helpline: 0300 123 3393 (Mon-Fri, 9am-6pm)
Text/SMS: 86463 (Mon-Fri, 9am-6pm)
Email: [email protected]
Website: www.mind.org.uk
Samaritans
Samaritans are a charity available 24 hours a day offering a confidential listening service to anyone in distress.
Helpline: 116 123 (24 hours)
Email: [email protected]
Website: www.samaritans.org
Also, you may wish to check out our page giving details of other organisations offering emotional support and mental health resources.
