The Kent woman with misophonia condition which means certain sounds drive people crazy
06:00, 03 February 2021
updated: 16:31, 03 February 2021
Have you ever heard a recurring noise that drove you round the bend every time you heard it?
For me it was traffic going over a wonky sewer cover in a road outside where I used to live in Medway.
Every time a vehicle drove over the loose cover, it would make a loud clanking noise as the front wheels, then the back wheels went over it.
It would steadily get more frequent as rush-hour ramped up the traffic along the main road and, at times, the noise was so clank-clanking bad I had visions of myself marching down to the street with a huge metal crowbar in hand so I could wrench the blasted thing out of the ground and lob it as far as I could.
That's how much the sound used to affect me every morning. It almost had me acting like a 'demonic maniac' filled with hysteria about the lengths I'd go to to make it stop.
Eventually I moved to a much quieter area - but I can still hear the haunting noise - and it's still as nightmarish.
So imagine having to live with a condition which makes you 'go crazy' when you hear certain noises.
Alex, 28, from Canterbury, does just that as she is one of many who suffer from Misophonia.
It is a disorder in which certain sounds trigger emotional or physiological responses that some might perceive as unreasonable given the circumstance.
It could be triggered by oral sounds, the noise someone makes when they eat, breath, sneeze or even chew.
It can also be set off by other sounds including keyboard or finger tapping or the sound of windscreen wipers.
Sometimes a small repetitive motion is the cause, such as someone fidgeting or tapping their foot.
People who have it sometimes describe it as when a sound 'drives them crazy'.
Alex, a web designer said: "The analogy I came up with a while ago, it's like putting your hand on a hot appliance that you don't know is turned on.
"That immediate reaction when you put your hand on something hot and your instinct reaction is to pull it away.
"That's what it feels like when I hear certain noises. It's just an instinct reaction I need to make to stop and I want to run away.
"Annoyingly with Misophonia it gets worse over time and you develop more triggers, so initially I was only triggered by the sound of people sniffing - it's still the main one I cannot handle."
But over time Alex found there were more sounds which would trigger off her Misophonia.
She added: "I have other triggers now. I describe them as wet noises, so lip smacking, nail biting and I also have mechanical triggers, so things like lawnmowers or leaf-blowers or cutting down trees, those sorts of noises can really trigger me.
"I am not triggered by some people eating which is strange as that is the most common trigger, so I am lucky in that respect.
"But I probably have about 80% of the normal triggers."
As time went on, Alex also developed Misokinesia which is the same thing but sufferers face visual triggers.
Alex added: "So the main one would be like people tapping their foot. Or if you are in the cinema, this is very rare this one, and someone gets their phone out and I can see the phone glaring, I have to move myself so I can't see the phone as I can't concentrate.
"Thankfully as time has gone on I have basically navigated my life to a point where it doesn't affect me much any more.
"I work as a web developer and originally I worked for companies and every company I worked for I was triggered constantly and it really affected my mental health.
"So I made a decision to try and go freelance exactly for that reason so I wouldn't need to work in an office any more, so I've been working for myself for like three years and my triggers have not been triggered as much, as I am indoors.
"Annoyingly, because everyone is also now working from home, I'm finding I'm getting triggered more so because people are around.
"For instance I can hear people banging around below me, like footsteps, that sort of thing, and we are in lockdown as well and we can't go anywhere and my partner is really good, I just tell him to stop what he's doing and he doesn't do it.
"So I'd say I'm maybe triggered say about five times a day for very small periods of time, so it is a lot better than it used to be."
But over the years Alex has found support groups which help her feel she's not alone.
She added: "I have had it for 15 years, so when I first developed it, I didn't know what it was or what it was called, or that there was anyone else like me and I felt very alone.
"About eight years ago I looked out and I found different online support groups, so I find that whilst there isn't a cure and there's no certain way of handling it, it's nice to know there are Facebook groups, meet ups and various other online forums and that makes me feel less alone and I know that I'm not going crazy."
But she also found there was no medical support to help her.
She added: "As far as medical support, no there is nothing. I don't know why actually, it obviously affects a lot more people. Maybe it's not been around for that long or it's being diagnosed as something else, like autism, which I also have.
"I've had 15 years worth of horrible experiences, probably the worst happened when I was younger.
"I was struggling with depression as a teenager anyway and that didn't help and then I developed Misophonia and I didn't know what it was.
"I remember being in Year 10 or 11 and I was doing a mock English exam and you have to write an essay for an hour-and-a-half.
"I had not been in that situation before since developing it, so I didn't think 'Oh this is going to be a problem', and I remember being sat for an hour-and-a-half and I remember thinking constantly, there is someone there and over there and over there, and I remember the only way to control it was doing a tally every time someone sniffed.
"It was the only thing I could do to control the thoughts and it was just erratic lines on a random piece of paper and I remember when a few weeks later, when we'd had it marked, the teacher had a go at me because she could see it and said 'What is all this? What is all this writing?', and I couldn't tell her what it was.
"That was the big reason I left my school and went on a course that was all coursework as I didn't want to be in that situation again.
"I wear ear plugs now. That's what I'd do now if I had to sit an exam. I never sit an exam without ear plugs now as I can remember the hell I was in then.
"That was one of the worst experiences I've had."
Dr Hashir Aazh thinks more people could be struggling with the condition during lockdown
However, there is some medical help out there for sufferers, such as therapy to help manage it.
Dr Hashir Aazh is an audiologist specialising in the management of Tinnitus, Hyperacusis and Misophonia and runs training courses for NHS providers in Kent on how to best support people with the condition.
He also thinks lockdown could lead to people struggling with the condition a lot more as they are unable to get away from their triggers.
He said: "Trigger noises can be made basically by people who are your family members. So if you're stuck in the same place like we have been for almost a year now, this can really impact and create a lot of conflict in your own house. During lockdown we have had more referrals for people with Misophonia.
"Like parents of children with Misophonia and so this has become more of an issue so they basically sought professional help with that and that's not such a bad thing as they started to take it a bit more seriously, so they saw the doctors and are doing something about it."
And he says there is no better time than lockdown to take up therapy to help manage the condition.
He added: "In terms of the people who enrol in the therapy, being in the lockdown scenario is just perfect for doing therapy because you get more opportunity to crack the therapy skills just by the nature of the way that things are.
"Your avoidance of those things are minimised so you get more chance to practice the skills that you learn during the therapy."
And another health professional says headway is also being made with other treatments.
Nigel Padgham is a consultant and ENT (Ear, Nose and Throat) surgeon in the county
Mr Padgham works in the Dover area and in the community across east and west Kent.
He said: "There are no formal accepted treatments but there are a lot of proposed treatments and they are often linked to the same sorts of treatments given for Phonophobia which is the fear of sounds or Tinnitus the abnormal sound in the ear.
"The difference here is that the treatment has to be towards the emotional effects of it, so it's not quite as simple as giving sound therapy which dries it out or stops you hearing it, as you can't not hear those sounds.
"There is no abnormality in the auditory pathway itself, so it's not an ear problem, it's a brain problem where the limits of the emotional centre of the brain is over-reactive to the sounds.
"It's almost as though the sounds make an immediate emotional response to it without really being thought through and whether the response is reasonable."
To find out more about Misophonia, visit the The British Tinnitus Association website, by clicking here.
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