Hearing Aid UK talks to Mike Knight, tinnitus sufferer and author of ‘My Tinnitus Journey’, about his roller coaster of a tinnitus journey and the path he walks now. Read about his inspirations, drive, education on a global scale with his biography and his newfound focus here.
For someone who has not interviewed a tinnitus sufferer and author - asking how long you’ve been a tinnitus sufferer seems like a good place to start. How long ago did you start showing symptoms?
I started with tinnitus when I was about 18, however never really knew what it was and identified it as just ‘ringing in the ears’. As the years have gone by it has turned into severe tinnitus with lots of noises in the ear and brain regions, however, my approach is now to expect that the tinnitus may increase in volume again, therefore it doesn’t have much impact every time there is a new tone or further increase in volume, which is hard to believe considering I can hear it above everything in life. I try not to see it as suffering anymore, just that the symptoms are just a part of who I am now.
Was seeking medical help and advice a natural step for you or did this take time?
I have been to an array of specialists including ENT specialists and neurological specialists throughout the years in particular when I first started with the tinnitus and also when it turned into severe tinnitus when I was 34.
In between these periods I just brushed the tinnitus to one side and never really went to any specialists nor went to the Doctors in general. I feel I was let down by the specialist at a young age with never really being educated on the impact tinnitus can have on daily life.
If I was a specialist in the field I would really push to ensure all patients receive a specific educational programme so as they fully understand how tinnitus can impact life and potentially provide the individuals with case studies of people like myself or others to highlight and educate individuals.
If I had been provided with this information when I was younger, I would have likely stopped DJ’ing and listening to loud music, thus protecting my ears and likely resulting in the tinnitus and further hearing loss from happening.
The advice from the specialist was don’t listen to music loud and learn to live with the condition and that was as far as I was educated on the subject. I do not blame the specialists, however, I wish had been provided with more education on the subject.
How important do you think an early diagnosis is to someone suffering from tinnitus?
I think as soon as you notice you have tinnitus it is extremely important to visit the doctors for a referral to find out the actual cause of the tinnitus, as there are so many variations. I know a few people who have it mild, with no apparent hearing damage, so the condition is so diverse and I understand this is the reason why a cure is so difficult and likely many years away yet, however, everyone must have faith one day, they ‘may’ be able to sit in silence again.
I now wear hearing aid’s as I have a loss of approximately 35db in the high-frequency range, I had the aids fitted in 2018, however, I likely needed them some 10 years earlier. I wish I had, had them fitted earlier as I avoided a lot of situations where I struggled to hear i.e., pubs, busy venues etc. This isolated me a bit, however, I was not aware that I was consciously avoiding them until later in life.
The hearing aids have been amazing, I have the Oticon OP1 and it has changed my life so much, I really enjoy going out now I can actually hear in all situations and not miss out on words, which was happening pre-having the aids fitted. My wife doesn’t have to shout at me now also!
Can you give us a brief glimpse into your own unique tinnitus journey?
It has been unusual in that from the age of 18 to 34, I knew I had tinnitus and it was fairly loud as the years went by, however, I never spoke about it to anyone and I didn’t really pay attention to it that often, the tinnitus just existed as part of me and I accepted that.
However I am not entirely sure what happened in 2014, however, there were a number of factors that may have impacted the volume of the tinnitus, including a bang to the head, stress and potentially some more hearing loss which resulted in the tinnitus being so loud I could hear it over everything, including plane engines, driving down the motorway in my van at 70 mph with the window open etc.
It was/is extremely loud. As you will see in the book, it has taken a lot of self-help and discovery to get to a place of peace now and I honestly feel it has placed me in a better place now than it would have, had I not gone to hell and back during the dark days.
What are your opinions on the medical profession regarding tinnitus then and today? Do you feel there is enough support out there?
As I mentioned earlier when I was 18-21 and had a number of appointments with a specialist I felt left down completely as I was uneducated on the subject. Every specialist I saw brushed me off with a ‘learn to live with it’ comment, which is technically what I did, however, this was not what was needed at the time and a programme to educate myself and others at that age could have resulted in a better outcome and in turn making better choices to protect our hearing.
Again when I attended numerous specialist at the age of 34 I received a similar response in that I was provided with little information and support, apart from CBT sessions on the NHS. I feel there is/was a massive lack of information and education by the NHS on the impact hearing loss can have on people and families to enable individuals to make better choices.
I see young children with headphones on today at worrying volumes and this identifies a clear lack of education to young children. Maybe consideration should be given in schools regarding the protection of your hearing if this is not already rolled out?
We have been reading how nutrition, self-help and exercise are some of the things that have played a huge role in you being able to control or manage your symptoms. How has this helped?
All three areas have played their own pivotal role in the recovery process and I am unsure I can pick out one area that has significantly improved my outlook. I believe if we focus on all areas as a whole, which would include meditation, mindfulness, yoga, family, nutrition and gratitude, then everyday improvements can be made.
If we focus on all these activities daily then I believe there is only one outcome, regardless of any condition the individual may have. It’s hard sometimes to fit all of the aforementioned in, but most people spend so much time consumed in social media and looking for answers to questions that are not there, rather than focusing on how we can better ourselves daily.
If you feed yourself good nutrition, your mind and body will be glowing, this will enable you to exercise daily and feel even better and then the cycle continues until you are in the best shape possible. Once you reach this state, you are in a better place to tackle the condition or any of life’s other challenges.
What sparked your drive and passion to write your book?
I had always wanted to write a book from an early age and when I was on a camping trip with a good friend and we were exchanging stories, he said ‘you should write a book about your journey’ and so the rest is history.
I started about 3 years ago when I felt I had recovered to a good place and then I dipped in and out of writing the book over a 3 year period when work and family life allowed. I never thought I would ever finish the book, to be honest, nor publish it, however, I am really pleased I did and I can tick this one off my list now!
What has been the biggest challenge being an author of such a personal and complex topic?
I didn’t really see it as a challenge, however when I started writing the book, in particular the early pages which were my darkest days, all the emotions came flooding back and it was very difficult at times, to read what I had been through and how my mindset was in those early days when I was struggling to come to terms with the condition.
Having to proofread the book a couple more times, also had the same impact on an emotional scale. I don’t see myself as an author, it was just something I felt I needed to do in order to release a lot of old emotional scarring and I must admit it certainly did drag some old demons from deep inside. I am terrible with emotions and expressing how I feel, so this was one way of expressing everything in one go, again opening myself up for lots more in the way of positivity.
‘My Tinnitus Journey’ has been published recently – what has your feedback been so far?
It’s only been a couple of weeks and we have not marketed the book as yet, which is due to start this week. My family have read the book and have provided positive feedback. My mum was very emotional because she knew I was struggling, however not to the extent I was, which left her feeling quite sad at a lot of the content in the book, during the darkest days.
My wife was also quite emotional reading the book, again I don’t think my wife understood how much I was finding it difficult to go on in life at the time, however, she stuck by me and told me everything was going to be ok all through the darkest days and she was right, it was ok and it always will be, I just had to have the faith that she had in me.
I would have liked to have included a lot more detail on each area that helped me, however, felt this would have made the book more specific towards nutrition, exercise, meditation etc, which is not what I felt was necessary. The book is the journey that I personally went through from the early teenage years to present, which I felt I have covered and hope it will help any other sufferers through the general process that is ahead of them and if I can help one person recover quicker, then I have done my job
What is your advice for those who are suffering now?
You must have faith that life will get better and you can get back to your old self. I didn’t believe it at the onset, however, we are consumed in the noise and that nothing can take it away. It really is a fear problem and as soon as we remove the fear associated with the noise, it loses it’s hold on us.
Do something every day that will improve your health, regardless of whether you feel it will or not just have faith that every day will get better and you can speed up your recovery through daily techniques described in the book. I wish on day one of the intrusive tinnitus I woke up and applied every technique daily, I can honestly say that this would have brought my recovery forward by months if not years!
I would definitely advise not to keep listening to the tinnitus which sounds ironic as I am sure all that are suffering cannot listen to anything else, however as soon as I stopped listening to the tinnitus (focusing on it), this again started to speed up my recovery.
The brain is such a powerful tool if used in the right way and this certainly applies in this situation. If your listening for your tinnitus, you are likely afraid of the noise which will increase your awareness and keep the loop of fear going. It is very important to talk to family also and don’t feel like you are burdening them, I didn’t speak out and suffered in silence, I would not act this way now and always speak to friends and family about how you feel, they are there to help you.
Get out into nature as much as you can daily and don’t spend your time consumed on forums looking for answers. There really is no answer at the moment on any forums, websites, search engines. You are the answer and only you can excel in your recovery and you will, believe me, and have faith.
What is your next move? Any new projects planned for the future?
Well, between family life and running the business, we are planning a move to Spain to set up a new venture there, being a cycling business and holiday lets. Also, I may even start writing a novel, it has interested me for some time and I do have a couple of ideas that keep niggling at me and may one day turn into a book, watch this space.
Mike Knight - Tinnitus Sufferer & Author of 'My Tinnitus Journey'
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