About three years ago, a blaring noise woke me up from a deep sleep. “Sounds like the furnace is going to explode,” I said to myself as I rushed to the basement to check it out. When I got there, I could still hear the loud hum, but I was unable to locate its source. It was coming from everywhere. It was not until ten minutes later when I realized that the sound was coming from inside my head. I panicked at that realization, and, as I started to hyperventilate, everything went dark around me. Summoning all my mental fortitude, I managed to blindly crawl to the second floor so that I could lie supine on my bed and try to relax and regain my composure. After a few hours, I had managed to calm down; the noise level inside my head had subsided but had not gone away.
I had taken some Ephedrine the night before because I was feeling some pressure in my ear. My local pharmacist had recommend it since it is an over-the-counter medication that helps clear fluid from nasal passages which can cause pressure in the inner ear.
Could I be having an allergic reaction to the Ephedrine? Might I have an ear infection? Perhaps my Lyme disease is back? What’s going on with me? I had a million questions.
I scheduled a battery of doctors’ appointments, which started that same morning. I visited ENT’s, Lyme disease specialists, allergists, and my primary doctor and had every conceivable blood test, MRI, and CT Scan performed. Everyone’s diagnosis was approximately the same, “there is nothing wrong with you, just relax and see if your Tinnitus gets better?”
Tinni-what? I had never heard of tinnitus, but as I started telling my friends and family about my problem, I discovered that everyone knew someone who had tinnitus and many had it themselves. And the more I talked to people with tinnitus, the more I was perplexed by their resignation that there was nothing that could be done about it.
I run 100 mile trail races for fun (yes, 100 miles over the mountains all in one day but that's another story). I’m not one to sit back and accept anything; I had to find a solution to this problem.
My research led me to a Harvard educated ENT at the famous Massachusetts Eye and Ear Infirmary. He did a very thorough examination and evaluated the bevy of tests that I had already taken. “Yup, you have tinnitus, alright,” he said. “What can we do about it”, I said. “Not much,” he said, “I have it myself. You can take these pills if it gets really bad, but careful, as they are highly addictive.” Seeing the perplexity on my face and knowing how serious I was about researching the matter further, he added, “well, there is a Laboratory in Canada that is doing some very nice research on this matter. I guess I could introduce you to them.”
The next week I was on a flight to McMaster University, in Ontario, Canada to get my tinnitus evaluated at the Human Neural Plasticity Laboratory of the Department of Psychology, Neuroscience, and Behavior. I would be undergoing the same evaluation process they used in their clinical trials, and I would be able to compare my results to that research.
I entered their laboratory and started three hours of evaluation. Their software was certainly much more sophisticated than anything I had ever seen in my travels in search of help. At the end of the process they gave me the good news that my type of tinnitus was not notoriously known to be dangerous. They graphed my results next to the results of their trials and explained what researchers currently believed to be some of the root causes of tinnitus and possible treatment options. They even gave me an audio file with the sound closest to my tinnitus pitch and told me I could come back any time to repeat the test to objectively determine if my tinnitus was getting better or worse.
As I review my personalized report, I thought about the millions of others suffering from tinnitus who could benefit from this software. Other tinnitus sufferers like me could be reassured to compare their tinnitus to that of others and track whether their tinnitus was getting better or worse, which is important when spending money on treatments that may not offer relief. They could learn about the causes of tinnitus, possible treatment options, and use the sound file of their tinnitus to let others know what they hear incessantly. More importantly, some might be warned that they have Pulsating Tinnitus - a potential symptom of a serious medical condition - and be impelled to visit a doctor sooner.
“Why don’t you make this available to patients across the world over the Internet?” I asked. “Millions of people could benefit from this,” I said.
"That would be wonderful. I think many people could benefit from this test and our research and knowledge, but we don't have the resources or knowhow to make it available on the web," Dr. Larry Roberts replied.
“My partner and I start technology-based companies for a living,” I said. “Can we license your software and make it available to everyone over the internet?” I asked.
And that’s how we came to invest much of last year to making this tool and the university’s research and knowledge available to tinnitus sufferers around the world. We make royalty payments to the university which further supports their research on tinnitus, and when users agree (this is optional), we make anonymized test results available to the laboratory to study.
It is my hope that YourTinnitus.com helps you deal with your condition and that you help spread the word of us to others suffering from this condition and to the medical professionals.
Jose Suarez