The Trouble with Tinnitus
In the olden days if you told people you heard noises in your head you’d be called crazy, but these days we’re learning that Tinnitus really does have a profound impact on the mental health of people who suffer from it.
Gary Etchegary, a retired teacher in St. John’s, has suffered from Tinnitus – described as a ringing, roaring, or rushing sound in the ear – for most of his life. Gary is proof of the huge impact Tinnitus can have on your quality of life, but he’s also done plenty of research and learned many ways to cope with the issue, which affects between 15 to 20 per cent of people.
“The noise itself is not that uncommon – lots of people have it and lots of people basically forget about it. They have this ability to forget about – the term they use is habituate – the sound and you know they go on with their daily lives,” he says, adding that for most of his life that was the case.
“It’s so subjective. It’s not something you can hear, or have any real empathy for what people are going through, and that’s one of the most frustrating things because It’s something I can only hear.”
Gary hears a sharp ringing in his ears all the time, but says when he’s busy, in a loud area like a classroom, or public space, the sound mostly fades into the background. It’s when he’s alone in quieter spaces – like his car – that the ringing is most prominent. However, it has a tendency to ramp up in volume when he’s stressed, anxious, or taking part in loud activities – like when he’s playing in or teaching young musicians in the youth orchestra.
Tinnitus is technically a symptom of ear problems, like age-related hearing loss, injury to the ear, or circulatory disorders, but recently it’s been linked with mental health problems such as depression, suicidal ideation, post-traumatic stress disorder, and anxiety. The constant noise and lack of control can even make the disorder a cause for disability and can prevent people from working.
“There are times when it can get really, really profound and it has a major effect on me, and when I talk about a major effect on me, I’m talking psychological. Because there may be times when the sound is bothersome, but … you wonder ‘Oh my god man, am I ever going to get control of this,’ Gary says.
You try to discern a pattern. Like I’m here trying to figure out if I sleep on my left side would that minimize the amount of ringing I get in the morning, versus my right side. You’re trying to find some kind of pattern on what to avoid in your daily life that would cause it to ramp up.”
Two years ago, while on vacation visiting in-laws in Ontario, Gary experienced the worst Tinnitus of his life. A typically active person, spending those summer months golfing and hiking, Gary tore the meniscus in his left knee. For several months he couldn’t walk – and while this should have had nothing to do with his hearing – he says the anxiety around the lengthy diagnosis, the surgery, and the possibilities for the future led to his Tinnitus getting so out of hand he wound up in hospital.
“It just catapulted to a whole new region, so it’s funny how the two conditions played off each other,” he says “I spent about a month-and-half in an absolutely terrible state going back and forth to emergency, not being able to sleep, trying to do something to lessen the Tinnitus. When in actual fact what was really driving it up was the anxiety. I was in a really bad place, an extraordinarily bad place.”
Having never experienced mental health issues before, Gary says the experience was eye opening. He regularly had panic attacks and couldn’t even visit with friends and family.
He soon saw a psychiatrist, began taking medication, and started counselling.
“It was that traumatic. And the anxiety …,” he says. “I just have such incredible empathy for people who are suffering with mental illness. I didn’t realize what it is that people are going through…”
“Three years prior to this I had quintuple bypass surgery and that was no fun. Being split open, and the rehabilitation, and having 135 staples in my body, but you know what I’d go through five of those as opposed to what I went through that particular month.”
There is no cure for Tinnitus, however a great deal of research has been done and there are many treatment options for lessening symptoms and managing the constant ringing. Gary has tried some of these treatments, including Tinnitus Retraining Therapy, which uses hearing aids worn throughout the day and set at a frequency similar to white noise to lessen the symptoms. According to Gary’s research studies have shown it can lessen the perception of Tinnitus by 70 to 80 per cent, and wearing the hearing aids can also amplify regular sounds, as sufferers of Tinnitus will often have hearing loss as well.
This treatment can be cost prohibitive, however, as hearing aids are expensive, often not covered under insurance, and then you have to see an audiologist regularly for adjustments.
In addition, Gary is considering a new therapy – carried out in Dublin – called Adapted Acoustic Neuromodulation,during which patients wear headphones and receive a specially designed sonic treatment for two hours to stimulate a certain part of the brain. In October, Gary will be flying to the UK out-of-pocket to find out if he’s a good candidate for the treatment.
“You could go on the internet and say ‘How do I cure this noise,’ and my god, the amount of stuff that’s on YouTube and places selling this herbal stuff, I mean the amount of people that are afflicted with this that have been totally unsuccessful with trying to deal with it and are looking for miracle cures,” he says. “Everyone says to you it’s insignificant, it’s not going to have any impact on your life, and people try to intellectualize it, saying, “You’re going to be OK, there’s nothing wrong with you, it’s just a perception issue.’ It just doesn’t work that way.”
Gary has also benefited from attending the Tinnitus and Meniere’s resource group at the Canadian Hard of Hearing Association – Newfoundland and Labrador. It’s helped him connect with other sufferers and find a community of people who understand.
The association has been a recent development – there are lots of people out there that don’t know there are resources out there to help them.
“The greatest thing in terms of their contribution is to get people together to discuss strategies on ways of how to deal with this,” he says.
“To speak and meet with people who are in a really, really dark spot and to reassure them that this will get better … It’s amazing. You’re looking around and you’re thinking all these people have the same thing that I have. Just to get your story out can be very therapeutic and then offer suggestions or if you can reassure someone.”
For Gary each day continues to be a different struggle. Some mornings when he wakes the sound is softer and others it’s loud. He wears earplugs and ear muffs when mowing the lawn and has even given up his beloved cat naps, since when he dozes off and wakes suddenly he says there’s a 200 per cent increase in the ringing.
“You try to be as calm as possible and I really enjoy walking and hiking I find that a fantastic way to engage my mind and to get away from it.”
If you suffer from Tinnitus or Meniere’s Disease, the Canadian Hard of Hearing Association – Newfoundland and Labrador offers support through groups, guest speakers, and awareness. Reach out to discover how you can learn new ways to cope.