Tinnitus is the perception of noise with no reason, and it affects one in seven people in Guernsey.
It can sound like ringing, buzzing, whooshing, humming, hissing, throbbing, music, or singing.
People living with tinnitus may hear these sounds in one or both ears, or in their head, and they may come and go, or they might hear them all the time.
With this week being ‘Tinnitus Week’, bringing a specific focus on enjoying life, and still being able to attend live events, Express has spoken with Samantha Masterman (55), who has lived with the condition for the past eight years.
I’ve forgotten what it was like before I had it, so I can’t remember what silence sounds like
samantha masterman
Ms Masterman said she has lived with tinnitus for so long now, that she can’t remember what her world sounded like before she developed the condition.
“I’ve forgotten what it was like before I had it now, so I can’t remember what silence sounds like, if that makes sense,” she said. “I have no idea what silence sounds like, because I haven’t heard silence in years.”
What causes tinnitus is unknown, but it’s estimated to impact one in seven people in Guernsey, and for many of them, the reasons for the phantom noises are completely unknown.
“I don’t know how I got it, but for me, it started when I was perimenopausal,” explained Ms Masterman. “Whether there’s a link there or not, I don’t know, but I had a head injury 20 years ago, I’ve had quite a few X rays, MRIs, CT scans…but is there a link there? I don’t know.
“I just know when it started, and what it’s become,” she said. “It’s got to the point now where it is very bothersome, but there’s just absolutely nothing I can do about it.”
The MSG’s Audiology department offers some treatments, but for Ms Masterman the treatments weren’t successful she said.
“Through the audiology department at the MSG we’ve tried different things. CBT, which I suppose can be helpful, but it for me, just didn’t do anything.
“I also had an earpiece to wear, so it’s like a hearing aid, it’s very small, but what it does, it emits a whooshing sound, which is meant to distract you from the tinnitus. For me, all it did was add another sound to the noise that I hear in my ear all day, every day, all night, every night.”
The UK Charity, Tinnitus UK has published examples of what these phantom noises can sound like online.
“The sound I hear in my left ear is high pitched, and I can only say it is similar to screeching train breaks,” Ms Masterman said. “So the sound you hear when a train comes into the station or underground, and you hear that screech.
“It’s like 1,000 nails being dragged down the blackboard. That’s what I hear in my left ear, and it’s all day, and it’s every day.
“In my right ear it comes and goes, and that one tends to be a more small sound, like a beep, a small alarm going, as if you’ve left the fridge door open downstairs, and you’re like, ‘right, where’s that noise coming from?’ and then I realise it’s me. It’s in my head.
“Sometimes my left ear, the tinnitus is so loud I look around and I think people around me must be able to hear this. How can people not hear this? It just feels like it should be audible to other people.”
There are other suggestions for treating tinnitus.
Even if there’s no cure, the persistent noise can be distracted from, to provide a moment of respite, Ms Masterman said.
“For a while you can kind of distract yourself a little bit by really focusing on these sounds, but eventually the noise, the screech, comes to the forefront, and then you don’t hear the other thing, and that just becomes an annoying murmur in the background.”
Part of the mystery with tinnitus is the cause, it’s believed not to be an audio issue, and that’s backed up by the results of hearing tests,
“I’ve had hearing tests that say everything’s good, but It’s just that I’ve got this extra annoyance going on, this monster,” said Ms Masterman. “So I also have to make sure I’m sitting in a position where I can hear people, otherwise, I find it takes me quite a while to process what people are saying, and by the time I process what they’ve said, we’ve moved on.
“I’m, like, buffering. I’m on a delay. So I’ll answer a question that came up ages ago, because I’ve only just managed to work out what it was.”
The first thing I hear in the morning is tinnitus, and the last thing I hear at night is tinnitus
samantha masterman
For Ms Masterman, there are ways to distract her from the constant ringing that she hears, and it lies in the art of distraction, particularly using the natural environment that Guernsey can boast.
“For me, being out of the house is better than being in the house. If I’m out and about, I’m less likely to notice it. I’m out walking the dog, or going for a swim, anything where there are things going on around to distract me, so visuals, smells, tastes, to take away from the sense of hearing the tinnitus. There’s no escape, but you can get a little bit of respite.”
The constant crippling companion can have a severe impact on someone’s quality of life.
Just a decade ago a woman in the Netherlands, Gaby Olthuis, was granted permission for euthansia by two separate doctors, due to the impact tinnitus was having on her quality of life.
The case prompted widespread debate, and even though the clinic in question received criticism from the Dutch Euthanasia Review Committee, the case was not prosecuted.
Ms Masterman said Ms Olthius’ story reached her in Guernsey, and resonated.
“Her problem was tinnitus, and it was upsetting for me to read.
“She’s a mum, I’m a mum. I think she had three children, I’ve got three children, and the thought that you cannot stay around living for your children, for your family, that’s just because of tinnitus. So it’s not something that should be dismissed.
“I think more research needs to go into it. People see it as not life threatening, but I actually think it is. It might not be life threatening in that the tinnitus will get to you, but the impact will.
“It affects my mental health, it makes me irritable, it makes me grumpy, it makes me tired, it makes me cry. I try not to let it stop me doing things and if I get out and about, I can almost forget about it.
“Sitting at home and kind of wallowing in it would be the worst thing to do.
“I like reading, I like drawing, art and everything. These are the things I really love, but I do have to accept that if I’m going to be doing something quiet and creative on my own, that I am going to be doing it with the tinnitus that is accompanying me on this creative journey.
“Whatever I’m doing, if I’m reading, it’s reading the book with me. If I’m drawing, it’s drawing with me. I cannot get away from it. So something like that, when it’s quiet time, and you’re alone in your head, you’re alone with your thoughts. The tinnitus is going to be there like a peacock doing its thing. You can’t escape it.”
When asked what can be done to make it easier for the one in seven people who suffer with tinnitus in Guernsey, Ms Masterman said raising awareness of it is key.
“Tell your friends and family so they understand if you’re a little bit distant, if you look a bit spaced out, if you look irritated, or upset,” she said.
“Find these sounds online and play them. I think it was only by playing it to my other half that he actually appreciated just how frustrating it is, and just try to retain your sense of humour, as with anything.”
Ms Masterman said tinnitus is like a monster she can’t escape and she empathises with other people who will have their own experiences too.
“I do sympathise with anyone else who has it, they won’t necessarily have the same sound as you, but whatever your sound is, it’s horrible, it’s a monster. The monster on my left shoulder.”