My Tinnitus Story
Thank you for stopping by at Tinnitus and You. This is a blog I started after battling Tinnitus for more than 2 years, from January 2018 to March 2020. Though it’s only been months since I began this blog, it been chosen as one of the top 20 Tinnitus blogs to follow in 2021. I believe the success of this blog is a tribute to the sincerity and interest with which I have tried to provide help to people suffering from Tinnitus. For me, my struggle with T was a frustrating and painful journey that broke me several times along the way. There were instances when I thought about ending it all, because the ringing was just unbearable. When you can’t hear the world for what it is and are not able to focus on anything for more than a minute at a time, there’s only so much perseverance, optimism and will-power can do. So, when I say I thought about ending it all, I say it without shame nor regret.
But, thankfully, the love of my family and friends kept me going, somehow helping me overcome those dark and gloomy thoughts. And, I am extremely glad for the support they provided me, for I wouldn’t be here otherwise. Tinnitus and suicidal thoughts go hand in hand. It is very common for people suffering from T to consider suicide. That being said, through this blog, I wish to inspire others suffering from tinnitus to stick it out and remain optimistic. There is no cure for tinnitus. That I can tell you right away. If anybody tells you it can be cured, they are lying.
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BUT, what a lot of people don’t realize is that it can be managed. And, by managed, I mean that you can realistically reach a point where the ringing just stops, for extended periods of time. When extended, I am talking weeks, months and maybe even years if you are really lucky. It might come and go from time to time though. Nobody really knows what causes tinnitus and how it affects a person the way it does. But, it is very possible for you to enjoy a vast majority of your life without the ringing. Sometimes, the ringing doesn’t go away but a person can habituate to it. By habituating, they can essentially forget that the ringing is there in the background. Habituation is similar to you being able to ignore the sounds of a fan or air conditioner after you have been in a room for a while.
Coming back to me and my Tinnitus, in a typical year, I have episodes of ringing that last about 3 to 4 days, about 5 or 6 times a year. But otherwise, it’s just pure peace and calm. Though I can’t say I have cured myself of Tinnitus, I will proudly say that my life feels so much more worth living now. When the ringing does come around from time to time, I no longer see it as a misery. I know I can keep it under control and just look forward to life without it, with gusto and optimism, and, when the ringing stops, with nothing but sheer joy.
How the Ringing began?
I was 25 when I visited my best friend’s uncle’s home. A successful and well-off commercial pilot, he was also a collector of World War II militaria or war memorabilia. He had a garage full of remnants from the war. From helmets to radios to a water bottle with a bullet hole in it, his collection was fascinating. But, his most prized possession was a WWII air raid siren. Retouched and painted bright red, it looked majestic as it sat there, taking up quite an enormous amount of space in the already crowded garage.
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Unfortunately, this is when my tryst with tinnitus began, as you might have guessed by now. I know a lot of people are going to judge me after reading what comes next. I’ve been called stupid and dumb for what I did. But, when I think back to that fateful moment, it was just something I did without a lot of mindfulness, maybe with a childlike intention. I pressed the big button that I found on the side of the siren’s bulky box frame. I simply had no idea that this relic worked, or worse, that it was plugged in.
The wailing was almost immediate. It started as a low and guttural whine but within a second or two reached that haunting pitch that you might have only heard in war movies.
I was a front, right and center audience to the box horn like speaker just a foot away from my ears. I simply can’t explain the sound. It’s just something that shakes your soul. It was after all designed to warn entire small towns about incoming air raids. Here I was, a lone guy, at its mercy, right in front of it.
More ashamed at my mistake of trying to turn on an air raid than wanting to save my ears, something I could have done by simply plugging my ears with my fingers, I desperately searched for a button I could press to turn the contraption off. Unfortunately, the button that started the wailing didn’t end it. My friend joined me in my frantic search to turn it off. But, it was until his uncle frantically came running to turn off a switch hidden behind the siren did it end, but not before eerily wailing away to a stop. I actually couldn’t tell it had ended. My ears were still ringing. I could see my friend and uncle animatedly talk to me. I knew they were expressing their disapproval of me having turning on the siren. But, I couldn’t hear anything.
It was not until a good 5 minutes after that I could slowly hear what was being said to me. But, the ringing just didn’t stop. Over than tinny ringing however, I could hear my friend say that he had a ringing in his ear too. A great friend of mine, even he couldn’t help but chide me for what I had done. The neighbors had been shocked and many had flocked to the house since then, enquiring about what had happened. Many had expressed their displeasure and the cops had turned up as well, to warn my Uncle about causing a public nuisance.
When the dust settled, my friend’s uncle then assured me that the ringing would stop in a day or two. It did for my friend, whose ears were back to normal the very same night. Not for me. The ringing persisted for more than two long years.
I had never imagined that a single mindless act of my own doing could change my life as I knew it. Yet, there I was, with no one but myself to blame, for bringing tinnitus on to myself.
My Struggle with Tinnitus
Over 2 years, a lot of people have asked me; “What is it like to have tinnitus”. Here’s how I always described it. Remember the bell in high school? Now, play that sound in your mind as if you were about 300 feet away from the bell. And, just leave it on, forever. That’s what it feels like. Reactions have been very varied when I described my Tinnitus this way. Most have said things like ‘that sucks’, ‘oh my goodness’, ‘that must be so annoying’. But, I’ve also got a few interesting responses like ‘oh, that’s not so bad’.
But, when you have a permanent ringing in the ears, people’s opinions on the matter hardly matter to you. It’s the last thing on your mind.
For me, the ringing was something I could get by with during the day. I had things to do, school to attend and sports to play. You can do all that if you have Tinnitus. So, take some hope in that. But, in the background, the Tinnitus was always there. But, when I was involved enough in an activity, I could let the ringing take a back seat. Sure, I had trouble following prolonged conversations and listening and trying to absorb all peripheral sounds around me. But, it let me live, fairly normally.
But, the time to sleep is when I struggled the most. Even before Tinnitus affected me, I was fussy about sleeping in a quiet environment. Living with roommates, I almost always slept with ear plugs on, so I could blissfully sink into a deep slumber without having to hear a clumsy or noisy roommate around the house.
Now that I think of it, I perhaps made my ears very sensitive by protecting it with ear plugs on an almost daily basis. I also plugged my ears when I studied or had to focus on anything, because we lived on a busy street corner with a lot of honks, ambulance sirens and even the occasional drunken and disorderly conduct . Maybe I hadn’t let my ears take any sort of abuse before that day with the siren, by using my ear plugs a lot. And, maybe, the air raid siren was just too much to handle all of a sudden.
Whatever it was, I found it impossible to sleep with the ringing between by ears. I tried the ear plugs that helped me before but it only seemed to amplify the sound. A lot of people don’t know that there is no actual sound when someone suffers from Tinnitus. It’s just that your brain erroneously registers or creates a sound and can’t get rid of it. It’s a phantom noise. So, ear plugs naturally don’t work.
Insomnia began. I was someone who could sleep like a log for 8 hours. With tinnitus, I was lucky if I slept an hour. When I did doze off, it was a surreal sort of sleep. You sort of hear the ringing in the background but your body is just too physically exhausted to let you keep your eyes open. But, the ringing always won over sleep. I would eventually always wake up, try to distract myself or think about my life before sheer exhaustion again let me snooze a little again. Then, it was back to the ringing. It was a vicious cycle.
This was sleep to me now. As the months rolled by, my skin lost its youthful luster. I looked ashen, tired and with eyes that sat deep in my sockets. In my first 6 months, I think I just desperately hoped that Tinnitus would simply go away. I read through many forums like Tinnitus Talk and countless other communities to understand when or how it might go away.
It was just full of opinions. Some said that Tinnitus will last just a few hours to as much as just 48 hours. If it stays beyond that, you are cursed for life. Then, there are others that says it can last a few days. There’s also hundreds who say that it can take up to a year for Tinnitus to go away.
So, what I did was eagerly wait out each one of these so called active periods, hoping that I will one day just wake up without the persistent ringing. A day went by, then 48 hours, then a week, then months and then 6 months. Almost nothing had changed. The only change I had noticed was that I was able to ignore the sound a little more than before. Initially, it took a lot of physical or mental activity to ignore the ringing. But, over months, I was able to put it in the background even when doing things like cleaning my room or making a run for groceries. But, it was always there. Just that I wasn’t so irked by it.
But, nights continued to be an absolute struggle, just like before. My body had got used to the erratic and occasional sleeping. I didn’t look any better and was tired and fatigued a lot but I had sort of accepted that this is how I would sleep. But, without proper sleep, I decided to finally take some steps to do something about my Tinnitus, instead of just hoping and waiting.
My Visit to the Audiologist
After asking around and reading on the Internet, Tinnitus Retraining Therapy or TNT seemed like the most viable option to help me with my Tinnitus. I was a student without health insurance and working just part time jobs. When I made the call to the local audiology clinic to explain my problem, they asked me to come in for a consult. “How much” is what I asked the lady on the telephone. Without skipping a beat, she said the consult would cost $700 and that would cover the fee of the audiologist and some basic tests. $700 was rent money. I had some savings but that was quite a huge ask. But, when you have a problem like Tinnitus, you are desperate.
I went in. The audiologist first asked me how my tinnitus began. He listened to my story about getting blasted by the air raid machine and seemed to be empathetic. Then, he quickly became objective and said “Well, we can rule out pulsatile Tinnitus then”. Later, I would learn that pulsatile tinnitus is caused by tumors or growth near cranial nerves. That was a relief. Otherwise, I would have needed MRI scans and probably surgery, both of which I could not even remotely afford.
The audiologist then accompanied me to a room where I had to put on headphones plugged into various apparatuses. Tinnitus test he said. Loudness matching and pitch matching. Then, he followed it up with a questionnaire. That was it. They said the office would give me a call.
Two days later, they did give me a call. I had to go back in. This time, it would be a $350 consult, as there were no tests. $700 down, I had to go in to just recoup that money to make sense of my condition.
The audiologist then gave me a pair of headphones that I had to slide behind my ears. He then proceeded to play a sound that I would describe as air hissing out a tire or from something with a lot of air pressure. This noise he said was to help me retrain my mind to focus less on the ringing on my ears.
“How long do I need to wear this for” I asked. Until you can ignore Tinnitus he said.
I was genuinely shocked. Here I was, being told that the solution to my Tinnitus was another noise, a noise I had to listen pretty much all the time. It was almost like I just paid over $1,000 to get myself a second tinnitus, on demand! I expressed my dissatisfaction to my audiologist and he basically gave me the equivalent of a shoulder shrug with words, saying this is the only treatment option.
“Ok, how much for the headphones I asked”. $1,800 he said, without skipping a beat.
That was it with the audiologist. I decided to cut my losses and head on out of there. It neither was affordable nor did I believe in it anymore. I did ask the audiologist if it would let me sleep and he said, yes, if you wore it at night. How could one possibly sleep with such bulky hearing aids sitting on the back of your ears. I wasn’t even a back sleeper. This was just a complete disaster. Moreover, white noise machines and maybe even my phone could reproduce that noise if I took some effort to find a similar sound.
Disappointed that I had blown $1,000 on almost nothing, I went back to my life with my ringing ears.
Tinnitus Is In Your Mind They Said
For the next year or so, I still sought relief for my tinnitus. I continued to read. A common theme I began to see from fellow Tinnitus sufferers who had Tinnitus for more than 6 months was -“Just live with it”. It’s a mental struggle they said. I began to think that it was maybe all in my head. After all, the sound I was hearing didn’t exist. It was a phantom noise. Maybe, if I concentrated or convinced myself well enough, the sound could disappear. After a long period of trying to think my way out of Tinnitus, I just gave up on the whole ‘it’s in your mind’ explanation.
I think a lot of people resort to this option because they simply give up all hope. When you don’t think Tinnitus can go away, I can see how you can just find ways to make peace with it. But, that wasn’t for me. I wanted my life back. So, I stopped visiting forums and decided to be positive and keep trying things until something worked.
Sound Masking Didn’t Work for Me
I next tried sound masking. This is basically a technique where you try to listen to a noise like white noise, to drown out the tinnitus ringing. At first, it seemed ok as you can’t really hear the tinnitus with white noise around. But, how long can someone listen to white noise! I mean, you have a life to live! The only time sound masking seemed useful was at night, when it let me fall asleep sooner than usual. During the day, it was just a hindrance, after just 15 or 30 minutes. Sure, white noise can drown out tinnitus. But, it also drowns out your friend’s conversation and music playing around you. It just shuts out everything. It’s like trading Tinnitus for deafness.
The only thing I would recommend sound masking for is your sleep. A lot of people have reported great success with sound masking for their sleep actually. But, unless you are a back sleeper and are able to sleep with earphones playing the white noise right into your ears, you will eventually wake up. Many people sleep on their sides and find it extremely discomforting to turn their head with earphones plugged into the ears.
The workaround is to use speakers or a fan that can generate that white noise or equivalent noise in your environment. But, this doesn’t work as well as white noise from earphones. I gave up on sound masking because I didn’t want to subject my ears to constant noise, even if that noise was this supposed to be therapeutic white noise. Just didn’t see a logical scenario where subjecting your ears to extended noise will provide long term benefits.
I Made Many Small Changes that Helped My Tinnitus
I realized that there was no magic cure for Tinnitus. But, based on my research, I could tell that Tinnitus could at least be reduced if not resolved. How? Well, not everything works for everyone. But, you must attempt to do almost everything I did to see what works for you.
To begin, start eating right. Cut out salts, fats and sugary foods. All of this messes with the blood that flows into your ears. Your ears are fed with capillaries which are tiny narrow blood vessels. When your blood pressure spikes because of unhealthy foods, blood doesn’t flow easily into your ears. Blood is what provides your ears with nutrients it needs to work properly. It also avoids conditions such as Tinnitus. If you ever wondered why your Tinnitus got worse after eating a pizza, sugary or salty foods, you now know why.
Next, check out all your Vitamin and mineral levels. Vitamin D, B12, zinc, magnesium, iron and even your folate levels could all play a part in your Tinnitus. Supplement vitamins where necessary and you might just experience great Tinnitus relief, like I did. It will not happen overnight. But, you will definitely experience a cumulative effect.
It is also important that you try to sleep well. If you can’t sleep well, try to sleep a at least a little better than you do now. It can have a HUGE effect on your Tinnitus. Also, keep your stress, anxiety or depression levels in check. Stress and Tinnitus is a vicious cycle. One makes the other worse and it can be a limitless cycle if you don’t control it.
I’ve journaled all my findings about Tinnitus here at Tinnitus and You. Please come back to my blog often as I publish often. I’m passionate about finding information that can help you with your Tinnitus.