Tinnitus: Part of a Larger Puzzle and Challenge

TomBy Tom Bowen

My life dramatically changed March 2013, while I was shopping with my wife and trying out a patio chair. I sat down and the chair fell backward, causing me to hit my head on several metal shelves before slamming into the concrete floor. Yes, it hurt, but the pain wasn’t that bad and the bump on my head wasn’t that big, so we carried on with our day.

Three days later, I developed a constant headache. My head felt like it was about to explode, so I saw my doctor, who said it was post-concussion syndrome, which is a complex disorder with various symptoms, such as headaches and dizziness, stemming from a concussion, or mild Traumatic Brain Injury. I tried various medications to reduce the pain, but none of them worked.

Not long after the headache started, I felt pressure in my ears and began hearing occasional whistles and locust noises in my left ear.

Just like the headache, the noise in my ear turned into a 24-hour nightmare – becoming more annoying and louder – magnifying a sense of chaos. I downloaded the sample tinnitus sounds from the American Tinnitus Association’s website to share with my doctor so he could hear what I was hearing. He confirmed it was tinnitus and sent me to an ear, nose, and throat (ENT) doctor.

After examining me and testing my hearing, the ENT said I had about a 30 percent hearing loss, which hearing aids could address along with the tinnitus. I was in my late 50s at the time and thought to myself, “I’m not old.”

There was no way I was going to wear hearing aids, so I turned to the internet for a cure. I found a program claiming to reduce tinnitus that I could do at home. To my disappointment, it didn’t work. Typical of post-concussion syndrome and bothersome tinnitus, I couldn’t concentrate long enough to complete the program, which added to my frustration.

I started to realize neither the medical professionals nor the internet had magical answers to make the noises and headache go away. I was going to have to live with both conditions.

Tinnitus Meets Depression and Anxiety

The tinnitus and headache became so debilitating that it was hard to function at work, at home, and with friends. I couldn’t handle it. I wasn’t easy to live with and suffered from mood swings. I was fortunate that my friends, family doctor, and wife were understanding and supportive. My wife kept encouraging me to continue my search for a way to get better. My doctor took a holistic approach and didn’t simply scribble off prescriptions.

Nonetheless, I was plagued by negative thoughts. Do I want to live like this the rest of my life? I stopped caring, so I went to a psychologist to get through this dark time. My family doctor prescribed antianxiety and antidepressant medications to help mitigate the symptoms.

While searching the internet, I came across the University of Iowa’s International Conference on the Management of the Tinnitus and Hyperacusis Patient, which was aimed at professionals but open to patients. My wife and I decided to attend and spent several days listening to lectures. We learned hearing aids could deliver white noise to my problematic ear, masking the tinnitus to provide some relief.

Once home, I was ready to see an audiologist to get fitted for hearing aids. The white noise from the masker was much easier to adapt to than the various noises from my tinnitus. But I wasn’t happy with temporary relief and consequently my depression and anxiety grew worse.

While reading a magazine, I came across an article on transcranial magnetic stimulation (TMS) to treat depression and anxiety. I decided to give it a try since the medications weren’t helping.

For TMS, I wore a padded helmet, which resembled a hair dryer like you see at beauty salons. The TMS helmet delivered magnetic pulses, which felt like tapping on the helmet, to stimulate nerve cells in the region of my brain thought to involve mood control.

Going to the treatment center, twenty minutes a day, five days a week for six weeks was a big commitment. To my surprise, my depression lifted. I no longer felt hopeless, even though there was no change in my tinnitus. For a time, life felt more manageable.

Tinnitus Meets Fibromyalgia

About three years after my fall, I started to feel random pain throughout my body and my tinnitus became unrelenting. Sometimes my back ached. Sometimes I had a burning sensation in my leg. Sometimes I had sharp pain in my chest, which led me to the emergency room in case it was a heart attack.

My arms, hands, legs, and feet became tingly and numb. I lost strength and endurance. And I was constantly tired. My depression and anxiety came back in full force.

My doctor diagnosed me with fibromyalgia. I saw a rheumatologist, who confirmed the diagnosis and explained that fibromyalgia is a chronic pain condition caused by the way the brain processes pain signals. Once again, no cure and more prescriptions to cope.

At work, I couldn’t handle the stress. I had trouble concentrating. I missed deadlines. And I made mistakes. At home, I didn’t sleep well, and I was irritable.

Finally, my doctors recommended that I apply for permanent disability, which I did reluctantly. That was a difficult turning point for me, because I enjoyed my work.

Determined not to give up hope, I attended the Mayo Clinic’s fibromyalgia program – an interdisciplinary approach to pain management that includes traditional medical, educational, self-management, and occupational/physical therapy components – to help manage pain.

I’ve learned that head trauma, tinnitus, and fibromyalgia are linked, even though the exact causes are not understood. Over the course of five and half years since that fall, I have come to accept my tinnitus and fibromyalgia as chronic stressors, along with all the emotions involved with having both conditions. The noise and pain never vanish completely, so they’re part of my new “normal.”

Chronic conditions are truly challenging, but we can move forward with support from family, friends, and good healthcare professionals.

Tom Bowen worked in marketing and communications for a Fortune 500 company for over 20 years. He lives in Des Moines, Iowa, with his wife and a small comfort dog.

I’m determined to make the most of my future, so I set two goals:

(1) Help myself

I applied and was approved to attend an intensive three-week fibromyalgia program at the Mayo Clinic Pain Rehabilitation Center, which can help me regain strength, rebuild stamina, and relearn tools to better manage pain. A reset, of sorts, to keep me headed in the right direction toward a better quality of life.

(2) Help others

I recently launched and lead a monthly support group for others with chronic pain. I want to motivate others and encourage people to never give up. I also wrote a children’s book to explain tinnitus to them so they wouldn’t feel alone if they have it. Lastly, I entertain children and adults as a clown, which is something I began in 1993. Little did I know at that time that clowning around and putting smiles on other people’s faces would provide me today with joy and distraction from my own struggles.