One of my most debilitating symptoms of 2011/2012 was noise sensitivity (technical name hyperacusis). After the health issues I faced in the first half of 2011 due to (then undiagnosed) Lyme Disease (you can read more about the full story here) I had this ringing in my ears (tinnitus). It felt like my brain was talking to my body saying ‘what the fuck???… something has happened – reboot to safe mode and stay on high alert for the foreseeable. Over….’
Now, the tinnitus was annoying, niggling – especially when you’re on your own in a quiet room, or trying to get to sleep. However, after dabbling in various bands as a bass player over the years I was kind of used to it, so that I could handle.
I don’t recall the noise sensitivity occurring as early as the tinnitus, but I know now that they tend to come hand in hand. I’m pretty sure that it was after the steroid treatment for pericarditis that I developed neuroborreliosis – and this was when the noise sensitivity hit hard. In a futile attempt to return to work in September 2011 I found that the harder I concentrated or thought, I’d set off this spiral downwards that I can only explain as feeling totally crazy, gone, psychotic, totally detached from reality. Noises and conversations would all sound the same volume, all at the forefront of my attention as my brain struggled to filter or tune out of the non-necessary sounds – an automatic process (part of the sympathetic nervous system) that goes on without us knowing.
That high alert state is known as the ‘fight or flight response’. It’s an animal instinct that sends our senses on high alert in response to perceived danger or threat to our well-being. What it means for an individual (or what it meant for me) was that sudden noises such as someone accidentally dropping something, certain frequencies of sounds – such as cutlery, crockery, young kids voices screaming or laughing would send a shooting sense of fear through your body and raise stress levels immediately – like “FUCK – IT’S A LION!!!”. If you don’t manage this quickly, the stress makes the fight or flight response more acute, which makes you more stressed… so the cycle gets worse. When you find yourself in a busy or echoey place such as a swimming pools, shopping centres, restaurant or pub – there is too much sound for the brain to process so ‘the gates’ (my pet name for the filtering process) are left wide open. At it’s very worst my instinct was to find my bed, shut the curtains, dive under the duvet and sob until it passed. This happened on a few occasions – one time in the middle of Lakeside Shopping Centre (Essex) when ‘the voices’ just got too much.
I read a lot about tinnitus and hyperacusis whilst all this was going on (in a sick kind of way I was fascinated, borderline obsessed, a lot of the time with what was going on with my body). I had read about tinnitus re-training therapy and how you could get treatment on the NHS. The NHS had failed me miserably at this stage so I was determined to get something useful out of them! I saw my GP, who referred me to ENT. A few months later (sigh…) I had my ENT appointment who tested my hearing and (of course) all was fine. I had to push it a bit but I eventually got referred (via ENT) to a Hearing Therapy specialist. When I saw her she was a very kind, understanding lady who herself was deaf with hearing aid implants. She was incredibly understanding and sympathetic to both my hyperacusis and also my Lyme Disease diagnosis. She explained to me about the fight or flight response, and how it is common in chronic illnesses. She explained that hearing aid users also suffer similar (but less extreme) issues of not being able to tune out of non-relevant sounds or noises and how she had to avoid busy restaurants and shopping centres like I did.
I didn’t even mention the White Noise Generators (WNG’s) that I had previously read about before she dug some out of her drawer and gave them to me to try. WNG’s are a hearing device that fit behind or in the ear. They emit a low level white noise (that old TV static sound that goes schchchchhchch…..). You set the output level to the same level as your tinnitus and wear them for long continuous periods, which (in tinnitus re-training) is reduced over time. She told me that they can be very useful for de-sensitizing the hearing for hyperacusis sufferers so I went away and tried them. The results were amazing – although I still suffered in certain environments I could tolerate much more and more importantly prevent the stress cycle from that snowballing effect – if noise did affect me it was something I could manage. She explained to me how it was important not to wear ear plugs and how it was best not to avoid these noisy environments as facing the issue head on, pushing through it, would benefit more in the long run.
The WNG’s were ever present in my ears for months and really enabled me to take a big step in recovery – the stress cycle can exacerbate Lyme symptoms and continually set you back.
One bizarre thing that was going on through all of this was that I was still making music with my band – something I could do with almost complete comfort – apart from the odd unexpected sound from a drum or keyboard which would scare the shit out of me, the actual playing, the loudness of the band playing together was entirely comfortable. Because it’s something I love doing there was part of me that thought maybe a degree of this is psychosomatic? I laughed inside when I thought about what some people might think – complaining of noise sensitivity, wearing WNG’s yet playing loud music in a band…. good job I don’t give a toss about what other people think anymore (smiley face, laugh out loud)….
When I spoke to my Hearing Therapy specialist about the music thing she explained something to me that made total sense. Music is something that your brain can dismiss as non dangerous – when a rhythm or tune starts your brain is so used to hearing music (since birth we are tuned to our western scales) that it knows what is happening next and dismisses the sound as not dangerous. I can’t explain this any better than this document – which explains the cause of tinnitus and hyperacusis, and how music relates in more depth.
I think I wore the WNGs for about 6/8 months in total. At the time I was taking various antibiotics for Chronic Lyme Disease – which got me to a much more reasonable state of health for a while. After the antibiotics had finished I was started on a herbal protocol of Banderol and Samento (by nutramedix). Within a week of taking Samento (I had started Banderol 2 weeks sooner than the Samento) I found that my hyperacusis had relatively gone. I don’t know if it was ending the antibiotics, starting the Banderol / Samento combination or what, but it was a very welcome improvement. I am really interested to know if anyone else has made this connection – maybe Banderol / Samento can more easily penetrate a central nervous system infection? Interesting – and well worth a shot if you suffer from tinnitus / hyperacusis.
Nowadays I can happily have my two young kids screaming round the house without having to disappear upstairs as often. I can go to a busy restaurant or pub and easily push through the noise. I’m not always entirely comfortable – and I still have some trouble tuning in to someone talking to me if there’s a lot of background noise – but it’s more a case of not being able to comprehend or ‘tune in’ to what they’re saying rather than feeling so uncomfortable.When my symptoms flare up (Lyme Disease is very cyclic in how sick you feel) my noise sensitivity is worse, but I resist wearing the WNG’s these days and just push through it – it’s a personal achievement not to rely on them but when my hyperacusis was at it’s worst, they really helped. Compared to where I was, that lowest of the low, living hell – over the insanity line in a dark room under the duvet…. I’ll take it thanks 😉
Thanks for reading – hope it helps!