Sal Gentile, a retired IBM executive, Army National Guard veteran, and Support Group Leader for the American Tinnitus Assocation (ATA), awoke one morning to a mélange of sharp and disruptive noises in his head. After visiting a doctor and being diagnosed with tinnitus, Gentile began a long and frustrating journey to find treatment options after he was advised to “live with” his condition by numerous hearing care providers. Since then, Gentile has participated in two consecutive year-tour, 100-mile national bicycle rides in ATA’s “Tour de Tinnitus,” raising over $20K for tinnitus research and awareness. He has also received awards from Tampa Mayor Bob Buckhorn and the ATA, and speaks regularly at hearing loss association conventions and civic organizations.
In the interview below, 4MyHearingBiz talked to Gentile about his tinnitus experience and the ways in which he’s tried to raise awareness of a health condition that affects nearly 15% of all Americans, according to the Centers for Disease Control (CDC).
4MyHearingBiz: Can you give me a little background on your experience with tinnitus, i.e., when did it start, what were your initial symptoms, and how have the symptoms affected you?
Sal Gentile: Approximately six years ago on my birthday I was invited to a dinner with friends. The next morning I woke up with loud, strange noises screaming through my head. I was frightened and thought I had brain damage. I remained in bed with the covers over my head for 4 days in tears. I finally found the strength, with the help of my wife, to see a doctor. He told me coldly, “You have tinnitus and have to live with it,” as he walked out with no further explanation.
4MyHearingBiz: Can you describe the sounds you heard?
Gentile: I have four different sounds in both ears and the sounds are louder on my left side.
- Fast-moving, loud machinery such as in a beverage or car manufacturing plant with moving parts;
- Fast-moving loud steam hissing from a steam pipe or air leaking from a tire;
- Bacon frying in a pan;
- Sizzling loud noise best described as many Alka-Seltzers fizzling in a glass (24/7), with an occasional quiet day. I stay up all night savoring the quietness until it returns the next day.
4MyHearingBiz: Have you sought treatment(s) for your tinnitus and, if so, has it been effective in relieving your symptoms?
Gentile: Yes, after visiting approximately 6-10 GPs, ENTs, and hearing professionals, and being told to “suck it up”or “live with it,” that was just not good enough for me. I wanted my quality of my life back again. I did some research and found the American Tinnitus Association (ATA). They have a Professional Membership Provider program which is designed to help locate clinicians, researchers and other healthcare professionals working in the tinnitus field. I found Dr Chris Spankovich AuD, PhD, from the listing on the ATA website. He spent four hours explaining what my condition was, [giving me] a basic presentation about tinnitus, and starting my white noise training. He suggested hearing aids and cognitive behavioral therapy. I now wear Widex Beyond hearing aids and since I live in such an active, but noisy, community I have a wonderful pair of custom-made musicians’ ear plugs, with a small battery operated amplifier that shuts down at 85 decibels to protect my hearing.
Before and After Treatment
4MyHearingBiz: How would you describe your life now versus before you sought treatment (if treatment has been effective)?
Gentile: Before treatment I was depressed and anxious; my life changed from [being] an outgoing person to [becoming] an introvert who never wanted to socialize. Previously, I was a highly sociable person who worked for many years. I could not sleep, would not attend my civic volunteer meetings at the time, and hardly had an appetite. I was, as we say, in “fright not flight” mode. I am excited and pleased that retraining my brain and using sound therapy and support techniques, such as hearing aids with white noise and cognitive behavioral therapy (CBT), has helped me habituate to restoring the quality of my life. Simply stated, I have retrained my brain to disconnect from the horrible noises [to focus] on enjoyable noises. With the addition of CBT and mindfulness meditation…I have learned to control my reaction to the noise. Although aggravating at times, I will not react to the noise; I just go on living my life. I can read books again and sometimes, when I wake up from the loud noise, I listen to it and let it put me back to sleep.
4MyHearingBiz: Do you know what may have caused your tinnitus?
Gentile: Yes, high-frequency hearing loss [possible causes of this include loud noise exposure from the military, loud music, and genetics]. I had been prescribed some antidepressants for a short period, which I was taken off of too quickly rather than weaned from, and feel it may have caused SSRI Discontinuance Syndrome, exacerbating the tinnitus I already had.
American Tinnitus Association
4MyHearingBiz: How did you become involved with the ATA?
Gentile: After being diagnosed by Dr Spankovich and starting my white noise treatment, I started to regain the quality of my life again. I became an ATA member and started receiving Tinnitus Today. I knew that I [now] had a new journey and mission, which was to help others, to be a support group leader, and to give those afflicted with tinnitus hope, help, and a safe place to discuss their tinnitus challenges. My first meeting had low attendance, however, the few attendees were so happy to know they were not alone; to learn the many support tools that are out there to help them; and to learn about an amazing organization whose mission is to promote relief, prevent, and eventually find cures for tinnitus. My second meeting filled the room with 60-plus attendees. Watching the smiles and enthusiasm on people’s faces while responding to questions; knowing that I was now making a positive difference in their lives; actually being hugged [by people] with tears streaming down their faces, made me realize my heart belonged to this cause. I have been running support groups for approximately five years and now run one monthly in The Villages, Florida.
4MyHearingBiz: What do you think the future of tinnitus research looks like?
Gentile: The future of tinnitus research will likely be much more focused on clinical trials and design. So much of the published literature on tinnitus has been focused on the basic mechanisms as to how and why tinnitus starts and what causes it to stay in some people while others are able to habituate. The scientific community has learned much about the brain’s involvement in tinnitus over the last 10 years, and now that knowledge is being utilized to target these brain areas through electrical stimulation devices, pharmacological approaches, and combination therapies (like sound therapy and electrical stimulation together/or sound and some variation of cognitive therapy). The focus is much more likely to shift into the clinical realm with an eye towards developing and optimizing treatments, and eventually cures, for tinnitus relief. Also, developing more reliable and objective diagnostic tools is something I think we will see more of in the future.
ATA has responded to the advances in tinnitus research by giving our Roadmap to A Cure an overhaul to reflect what is now known and what research avenues should be pursued. The Roadmap was originally developed in 2005 by our Scientific Advisory Committee, the volunteer academic body that reviews grant applications that we receive at ATA. It outlines five paths of research and reflects ATA’s core purpose of preventing, promoting relief, and eventually finding cures for tinnitus.
4MyHearingBiz: What is (are) the most important piece(s) of information that you hope to impart to people who have recently started experiencing tinnitus?
Gentile: To listen to their stories and let them know they are not alone; to explain all the support tools that they have available to them. Take it day-by-day and try not to get into stressful situations. Stay busy; never stay in silence. Attend tinnitus support groups and read all the helpful information on ATA.org Explain that there is always help and hope and encourage them to have a good attitude. There is no cure now, but that doesn’t mean there will be none. Have them speak with other people afflicted with tinnitus who are living their lives again. Most importantly, remind them that every morning, no matter how they feel, to treat themselves with kindness.
ATA Support Groups
4MyHearingBiz:Can you tell our readers a bit more about the ATA support groups and how they can help?
Gentile: ATA currently has 37 support groups in 24 states in the US and District of Columbia. That number continues to grow. The support groups are volunteer-led and the ATA Board of Directors created a manual which is available to prospective support group leaders to help them get started and guide them as they begin and grow their groups. There are two ways you can help with ATA’s Support Group network. First, click here to see if there is a support group in your area. If there is not, and you are interested in starting one, please contact Sal Gentile, ATA National Support Group Liaison at [email protected] to find out more about starting a group. You do not need to be a tinnitus expert, or even have tinnitus to lead a group; you just need to have a sense of wanting to help and support the tinnitus community and be organized.
If there is already a group in your area, one of the biggest ways you can help is by simply attending meetings. If you are new to having tinnitus, educating yourself about what treatment options are available and what is going on in the world of tinnitus research can be key tools to helping you learn to live better with your tinnitus. You never know when your tinnitus experience will impact another person positively and help them in their tinnitus journey. Most of all, these groups provide help and hope for people living with tinnitus and a sense of understanding and community that they may not be able to get elsewhere.
The ATA has partnered with Tinnitus Tees, a company ‘dedicated to spreading the word that tinnitus research matters.’ Proceeds from each $20 sale will be donated to ATA.
Portions of this Q&A interview may have been edited for clarity or length.
Images: Courtesy of Sal Gentile