Don't think of a pink elephant
Guest post by Jonathan Andreo
This post was originally published on Medium by Jonathan Andreo. What Jonathan shares here, is exclusively his opinion and his way of living with Tinnitus. He shares his ideas on how to cope better with Tinnitus, as like myself, we share a vision on helping as many people as possible to live a better life despite Tinnitus. Now please enjoy reading his article 🙂
Living with tinnitus
I was only a kid when I was struck with tinnitus — that ringing in your ears you get after going to a loud concert without wearing earplugs (please protect your ears!). Except it never went away. Today, some 17 years later, I would like to tell my story and share some tips about coping with what can sometimes feel like the most alienating, frustrating and physically exhausting symptom. With this, I hope to raise awareness around this little known/understood disorder and educate those who do not suffer from it to better understand those who do. I’d also hereby like to help those who do suffer from it by saying that yes: it can get better.
It was an otherwise nonmemorable school night somewhere around 2002. When going to bed that night, instead of the silence I was used to, I was now also hearing a high pitched ringing, in both ears. I was about 12 years old back then and little did I know that I would be carrying this high pitched screech with me 24 hours a day, every day, probably for the rest of my life.
I also hadn’t anticipated that it would have a significant impact on most aspects of my life. The ringing now dictated my sleep, my mood, my ability to focus, memorize, learn, socialize, live and love, ultimately shaping the person I am today.
Very early on, after being struck with tinnitus I realized that one of the aspects that make it so incredibly frustrating and incapacitating is that it creates a vicious cycle.
I woke up tired and in a bad mood. I avoided social interactions, reading and learning became exhausting. All I wanted was a restful moment but dreaded bed time as it was time to fight the noise, and I would lose, every night. Silence no longer existed and the noise which stole its throne was the only thing in my head.
Despite all this, you still have to go to school/work/that appointment/that important meeting/see your friends and family, right? And ‘I’ve got a ringing in my ears’ doesn’t really sound (pun intended) like a good excuse. So how does one cope, how does one break free from this cycle?
To be honest I don’t remember much about how I coped with it as a kid, although I know I had a hard time dealing with it at first. I guess I progressively got used to it during the following 15 years and I was eventually able to live my life almost normally.
That is until I suffered from a work related burnout a couple of years ago.
Unfortunately, my tinnitus suddenly tripled in volume and it was like I was 12 all over again, but worse. Worse because I knew what having tinnitus meant and because dealing with it all over again, multiplied by the effects of a nervous breakdown felt insuperable. My first reaction was to distance myself from everyone and refuse any sort of interaction other than what was strictly necessary. For months I had stopped caring about my job, friends, family, personal hygiene and all that really mattered was getting rid of this infernal screeching inside my head.
Unfortunately, I wasn’t smart/brave enough to seek external help (I regret this and would recommend anyone facing hard times to seek professional help as soon as possible) and just “powered through” for roughly a year. For the first time in my life, I had to deal with a new set of stress related symptoms such as anxiety, panic attacks, vertigo, nausea, etc. Both tinnitus and stress related symptoms would mutually amplify each other. Needless to say that this period of my life was not a walk in the park. However, it has certainly been one of the most enlightening.
Research & experimentation
At first, in an attempt to suppress the ringing (believe it or not much more debilitating than any anxiety, vertigo, nausea or depression) I experimented with a few things I’d read online. First of all, there’s this “miracle” technique where you cover your ears with your palms and snap your fingers on the back of your head a few times. Sure, it will give you the impression that your tinnitus is quieter for a few minutes, at best. But unless you want to spend your life hitting the back of your head with your fingers, there’s got to be something better out there.
There’s this tree called Ginkgo biloba, whose leaves are crushed and turned into pellets. It’s meant to increase blood flow to the head and decrease tinnitus, unfortunately this didn’t do much for me. Perhaps I wasn’t as diligent (1 pellet with every meal) and persistent (at least 2 months before noticing effects) with this treatment as I should have been..
Next up: CBD, the non-psychoactive cousin of THC — that’s right, the euphoria-inducing chemical compound which gives you the munchies. Having read a few miracle reviews (as well as snake oil ones, although the distinction there fades proportionally to the level of despair), my hopes were high and I thought it would quiet down the blare inside my head at least a little. It didn’t. However, although CBD did not seem to impact my tinnitus directly, it did help with the anxiety and panic attacks.
Whether the CBD was actually working chemically or if it was a mere placebo effect, I wouldn’t know, and at that stage, it didn’t even matter. It did, however, teach me something crucial. There seemed to be a direct correlation between my anxiety and the impact of the ringing on my life.
In the meantime, I had also bought a tiny speaker which plays a (rather lo-fi) rain sound. I have it on my bedside table and still turn it on every night. It definitely helps drown out the ringing with a much less irritating rain sound. As an aside, after having experimented with a variety of different audio signals, I discovered that the sound of rain, specifically, was the most helpful one. This is because it is both constant and chaotic enough to not be distracting and broad enough in terms of frequency range that it’s likely to mask your tinnitus. While on the topic, here is a binaural recording of a thunderstorm I uploaded onto SoundCloud, which you can listen to when you need to escape the ringing for a while.
Now that I had bed time sort of covered (as best I could), I still found myself unable to focus in other quiet environments such as at work or at home. I thought I would start listening to music or rain whenever I had to read a book, write a friend, cook, work, etc. Unfortunately, traditional headphones weren’t cutting it because they meant covering your ears (duh!) and would therefore muffle any exterior noise/sounds, making the tinnitus even more present. After a quick search on the web, it turns out bone conduction headphones had become available. Having studied audio engineering, I was aware of the technology — sound is transmitted through your bones rather than projected into your ears, allowing you to remain aware of your surroundings all the while listening to your favorite album, podcast or rain recordings.
Despite being marketed exclusively to healthy runners, it sounded (pun int… never mind) like this technology would help me too! Although I was slightly disappointed with the quality of the sound at first (the sound travels through.your.bones, what was I expecting!), soon enough I was wearing them all the time. Not only are they lightweight, look kind of futuristic and you barely feel you’re wearing anything, you can hear everything that’s going on around you while listening to your music, it’s a strange sensation at first but quickly becomes addictive. Whether I’m walking in the streets, reading at home, working at the office, I can have conversations with colleagues, chat with my partner without having to even pause my music (or thunderstorm). When the tinnitus got really bad, I would even listen to rain recordings while doing other things that also involve sound like watching a movie or playing video games, and it works surprisingly well together!
Although these gadgets were helping deal with the symptom, I eventually had to tackle the cause of my tinnitus if I wanted to overcome it and take my life back. This meant breaking out of a vicious cycle and it was one of the hardest things I’ve ever had to do.
What do you think of when I say ‘Don’t think of a pink elephant!’? That’s right, a big pink elephant is now stomping around joyfully in your head. That pink elephant, that’s tinnitus. How not to think about that big, bright thing that’s trumpeting non-stop inside your head? This is where it is crucial to proactively gather all of your mental strength and make that elephant as insignificant as possible by introducing changes to your life.
It takes a great deal of mental strength, diligence and sacrifice to go against everything your mind and body are telling you to do — or rather not to do. Despite the constant exhaustion (climbing one flight of stairs would have me out of breath), I would force myself to go out and do things when the mere thought of being outside would trigger vertigo and nausea.
That’s when I decided to start practicing Wing Chun (the martial art made famous by Bruce Lee) and it’s probably what has had the most impact on my life, and therefore my tinnitus. There’s something about intense physical exercise, coupled with the sensation of becoming physically stronger that relaxes the mind. I know it’s an incredibly difficult task but if you want to deal with your tinnitus, you will have to tackle your stress and anxiety. Regular physical exercise, having a good work/life balance and the healthier your diet the better (avoid sugar, salt, fat, caffeine, alcohol and smoking).
Now don’t assume I do all of these things perfectly myself — I could exercise more, lead a much better diet and I do love me a good beer — but it’s hard to lead a perfectly healthy kind of life with lots of spare time and energy these days. However, it’s fairly easy to start small and go from there. When desperate, even the smallest improvement will feel like a huge success.
So if, like me, bedtime is when your tinnitus is the most frustrating, try some sleeping tea for example. Here’s a few natural things I have tried which you will likely find in various shapes, forms (teabags, loose leaf/flower mix, drops, pills, etc.) and prices: valerian, lavender, chamomile, elderflower, hemp, passiflora, hops and a few other “planty” things. Fun fact: thanks to the rising global craft beer craze and the popularity of ultra hoppy American styles (to which I gladly indulge!), it is a lot cheaper to buy fresh hops and make your own infusions than buying any other sleeping tea out there. Sure, a hot, bitter IPA doesn’t sound like the best pre-bedtime beverage but it’s nothing a bit of honey can’t fix.
What about science?
If bone conduction headphones and hop infusions don’t sound like the latest in tinnitus treatment technology, they’re not. A quick Google search and you’ll find anything from various types of therapy, to homeopathy, different hearing aids, noise generators and other (more snake oily) “miracle” solutions.
Also, every few months a new article will come out about a new clinical trial which has had good results, then there’s a vague description of the experiment and it will end with something along the lines of “when this treatment gets approved (if ever), it might take years before it becomes available”.
I’m not sure where/how people enter clinical trials, every time I went seeking for help from a doctor or specialist, it started with a “Let’s conduct a hearing test…”, then a “Oh, your hearing is just fine.” and ended in a “Just try not to think about the tinnitus, ok? Bye!”. It seems they always expected my tinnitus to be accompanied by hearing loss, which it isn’t. I don’t blame them though, I guess tinnitus is still quite a difficult condition to observe, analyze and treat.
According to most resources, roughly 10% of people worldwide suffer/have suffered from ephemeral and/or chronic tinnitus. I assume a fraction of this number suffers from it enough that it has a significant impact on their quality of life. If so many people are struck with this condition in some form or another, it’s hard to understand why we do not yet have a cure for it, or at least treatments that are affordable, effective and widespread. Maybe funding is the issue here, or perhaps tinnitus is unfortunately not considered as high a priority as other conditions or disorders out there, I don’t know.
Although I will probably never figure out why I was struck with tinnitus at such a young age and I may never know silence again, today I’m in a much better place. I still struggle with tinnitus on a daily basis, mostly during bedtime, but the ringing is not nearly as loud/inconvenient as it was during the burnout. This is because I’ve learned many things about it.
Unfortunately I was never able to get any medical help, but testing things out as I went led me to understand that I could have an influence on it and that alone was a huge improvement. Once you understand how to deal with your tinnitus, how to control it, that’s when you can start accepting it. And when you start accepting it, the pink elephant starts shrinking.
Given the known causes for tinnitus are very diverse, it’s possible that none of the things that work for me will do so for you. (Or vice versa) In which case I do suggest you seek medical help, and in parallel try things out for yourself, be creative, get healthy, find/do something that makes you feel better and I’m confident you will notice an improvement in no time.
As a takeaway I’d like anyone currently struggling with tinnitus who is reading this, to understand that tinnitus is a symptom, not a disease. Give yourself the means to lead a better, healthier, happier life and you will be able to break the vicious cycle of exhaustion > despair > depression. Do what it takes to reduce your stress and anxiety, get healthier if you can, do some exercise (have I mentioned martial arts??) and don’t let yourself reach a nervous breakdown before doing something about it as it will become that much more difficult to overcome.
I’ve created a Slack group where people with tinnitus (or not!) can come and share their experience, get some tips, or just have a chat with other people who know what it’s like to have tinnitus. It’s a little quiet in there at the moment (ironically…), but hopefully more people will join going forward. Also, shoutout to the British Tinnitus Association who is very active on Twitter and feels like one of the few organizations out there proactively engaging with the community and sharing news, stories, and many other things involving tinnitus and people who suffer from it.
Finally, I’d like to dedicate this story to my partner, Julia, whose love, understanding and support during the more difficult times kept the pink elephant from stomping all over me.