Living with Tinnitus

HUMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM.
Thats tinnitus described in one line. Although to a tinnitus sufferer, the line is probably alot longer, and much louder.

I’ve had tinnitus since I was 15 and it has had a major impact on my life since then. Family and friends often comment that I don’t speak about it much, so I decided to write about it instead.

What is tinnitus? Well it affects people in many ways. Its believed that as many as 1 in 10 people suffer from it throughout their life. For most sufferers its an incurable condition. So what exactly is it? Well this is what Wikipedia has to say:

Tinnitus (pronounced /tɪˈnaɪtəs/ or /ˈtɪnɪtəs/,[1] from the Latin word for “ringing”[2]) is the perception of sound within the human ear in the absence of corresponding external sound.
Tinnitus can be perceived in one or both ears or in the head. It is usually described as a ringing noise, but in some patients it takes the form of a high pitched whining, buzzing, hissing, humming, or whistling sound, or as ticking, clicking, roaring, “crickets” or “tree frogs” or “locusts”, tunes, songs, or beeping.[3] It has also been described as a “wooshing” sound, as of wind or waves. Tinnitus can be intermittent or it can be continuous. In the latter case, this “phantom” sound can create great distress in the sufferer.

Thats about right. What causes it ranges from long exposures to loud noise or “you just get it” syndrome. For me, I have it in both ears although it is slightly louder in my left ear. I have it 24/7, 365 days a week. Even on bank holidays. And its fucking annoying.

I first noticed it at about 15 years of age one night, when I heard a ringing noise but I wasn’t sure where it was coming from. Its now far louder than what it was then, I suppose I can blame that partly for my love of music and my involvement in bands some years ago!

So what did I do when I got it? I went to my local GP. He was the family doctor and very down to earth. He explained the ins and outs on it, but admitted he doesn’t have that many patients for it and “you’ll just have to learn to live with it”. Yeah thanks doc. It seems what he said is an immortal line that is said to many of us “T” sufferers around the world.

What happened next was I went mad. I went through periods of depression, withdrawal from life and a fear of going to bed. It’s at it’s worst at night when things are quiet. Falling asleep can be awful on a bad night.

The doc referred me to an E.N.T. (Ears, nose and throat specialist) in case it was something more serious. At this stage I had tinnitus for a number of years. I was a a shy late teen with plenty of anxiety. The ENT was pricey and to be honest, useless. His did some hearing tests with my ears (which later confirmed my hearing was perfect) and sent me for an MRI scan. He was able to recreate the sounds I hear, via his sound desk and in an effort to “phase” or mask out the sound temporarily, he played it into my ear at the same pitch that I hear. It reduced my tinnitus slightly for a day or 2.

As expected the MRI confirmed I had a brain and 2 ears. It also confirmed I didn’t have a brian tumour. It was a nice result but not really what I was expected. The ENT wrapped up my visit with a lovely letter telling me I didn’t have that brain tumour. Thanks doc.

So I ended up being in a worse place than I was before. The pricey ENT couldn’t help, and the Dark Years began. I started to drink most nights. Not heavily, not to get drunk, but to help me fall asleep quicker. I was really depressed and at my wit’s end. I often feel asleep in tears with cheap headphones wrapped around my ears or stereos beside my pillow. I didn’t know what to do. The National Deaf Association had a tinnitus support group but as far as I remember, they met only once a month. I didn’t know what to do and I couldn’t bear the thought of a life like this and even considered suicide.

Then one day the internet was invented.

I got into the habit at night of getting up if I couldn’t sleep and browsing the net. I didn’t tell my family or friends how bad it really was at the time. It was pointless. Unlike a broken leg, the tinnitus wouldn’t heal so I didn’t see the point in offloading my problems all the time. Besides, none of them truely understood how awful it was. Most of us when we go to a niteclub or concert, suffer temporary ringing in the ears depending on how loud it was, but it subsides. Its hard for people to imagine having it all the time.

One sleepless night when browsing the internet on a dial up connection, (Broadband was the name of an overweight lady’s clothes shop in those days!), I discovered a Tinnitus support forum online (which unfortunately is no longer around). It was fecking marvelous. People from all over the world just like me. Some worse, some better. In the middle of all the users was a man, who indirectly changed my life.

His name was/is, Dr. Stephen Nagler. He is a US doctor who suffers from tinnitus. He has dedicated much of his life to helping those with Tinnitus. HIs website can be found here.

While I never met the chap and couldn’t tell you what he looks like, I did read his posts, and study up on his TRT – Tinnitus Retraining Therapy.

He inspired me to tackle my condition. I attended acupuncture, took some herbal remedies to better my well being. (Although I avoided the controversial Ginkgo Bilbao herb). On studying TRT, I began to teach myself how to tune out to Tinnitus, to turn the Tinnitus noises, into something similar to the buzzing of a fridge or the air conditioning noise in your office. Over the space of a year, my life started to improve.

I’m now 31 and I can sleep at night. Even though I will probably never sleep in a room without some form of audio distraction (fancy talk for a radio or ipod!), I don’t fear bed. I have a set of rules and routines I live by.

To friends and family, they have probably forget I have tinnitus and that’s a good thing. I don’t feel the need to ever raise it in conversation. When I have a “bad day”, I can deal with it on my own. I don’t get depressed and my self confidence is just like William Shatners. Why Willliam Shatner? Well because he has tinnitus. As does, Neil Young, Leslie Nielson, James Hetfield and Lars Ulrich from Metallica, Bono, Beethoven, Van Gogh, Thom Yorke and Sylvestor Stallone. To name but a few.

Every tinnitus sufferer has their story. Some of us come out the other side, some of us don’t. My story, albeit short summarised here, isn’t one shared by all sufferers unfortunately. Since my coming to terms with my tinnitus, I feel comfortable talking to fellow sufferers (in the past I would avoid them as they depressed me even more!) I hope that I have helped some of them in recent years. Or at least provide an understanding, um, ear!

Anyway that’s my story. Are you still listening?