Today we share the story of tinnitus and hyperacusis sufferer, Jojo Jose.
Jojo Jose’s condition includes ear pain that spreads to his face, neck, and all the way down to his lower back, which causes him headaches. He also suffers from occasional vertigo that comes unexpectedly. Jojo tells us he uses pain reliever medicine on a daily basis.
Jojo first started noticing the ringing in his ears when he was about 13 years old. This was in 1969 when his family was still in the Philippines. His family owned a piano repair shop and his dad always had band rehearsals in their home. Jojo did not pay much attention to ringing in his ears at such a young age, as he wanted to pursue a music career.
By the time, he was 15; Jojo was already playing the hotel and nightclub circuits in Manila and thus was around a lot of noise. He decided to continue to pursue a music career and studied music at the University of Santo Tomas in Manila. Jojo recalls noticing how the ringing in his ears was getting louder especially when practicing piano in the soundproofed practice rooms.
At times, Jojo would experience some light-headedness and dizziness but it was never bad enough for him to worry. When Jojo’s family moved to the USA in 1976, his exposure to a lot noise continued. There he studied composition at the University of Washington while playing in jazz and dance bands on the weekends.
When he left school Jojo opened up a piano repair shop, tuned an average of 2-3 pianos a day, and played music several nights a week. By 1981, while tuning pianos, Jojo again started noticing some pain and headaches. This time Jojo decided to consult with an ENT (Ears, Nose and Throat Specialist). However, the ENT did not find anything wrong with him. After a while, Jojo found he could not tune more than one piano a day because of the pain, especially in the right ear.
By this time, the ringing was gradually getting worse. Jojo could now hear it even when it was not quiet. He sought some alternative treatment without success. Jojo first tried biofeedback treatments to relax the muscles around his neck but ran out of money so he had to stop. Eventually, Jojo had no choice but to shut down his piano repair business because the pain was just unbearable. He continued to practice piano, mostly at lower volume. In addition, Jojo quit playing with his band to lessen the exposure to noise. This was a very hard decision to make since both piano tuning and playing music were Jojo’s main sources of income. He ended up trying different things from selling vacuum cleaners, import export to real estate investing.
A couple years later, Jojo noticed some improvement in his tolerance to noise and decided to try playing music again. He joined the US Air Force Band. In the band, they had both small and large ensembles; Jojo played the piano, flute and percussion instruments.
He was fine for a couple of years but the pain once again started setting back in. It got to a point where Jojo was taking pain pills every day. This time Jojo saw a different ENT specialists, both military and civilian and they could not figure out what was wrong with him.
Jojo then visited a TMJ specialist, hoping they would find something. They tried splints, partial dentures, etc. with no success. He also saw a neurologist, psychiatrist, and physical therapist. They did a CT scan and MRI to make sure he did not have a tumor in his brain.
This went on for several years. Jojo transferred to a different position in the band. That allowed Jojo to stay in the band with less exposure to noise. In the meantime, Jojo was seeing a counselor to help him deal with everything that was going on.
Jojo stated, “I felt like I was about to lose everything I have worked for. The years of practicing, preparation and the dream of making it in music was starting to get blurry. I was taking 800 mg of Ibuprofen 2-3 times a day.”
In 1990, Jojo doctor diagnosed him with ‘auditory recruitment’ and given an honorable discharge with partial disability. According to his records, his condition fell in the ‘hypochondriac’ category.
A few years after his discharge, Jojo received a letter from the VA saying that he needed to see an audiologist who had some new therapy for him. Jojo’s condition had gotten worse; even though he was no longer exposed to loud noise.
Jojo was told his condition was not auditory recruitment but hyperacusis, though there was no cure they had an appliance to help retrain the hair cells in the ears. The appliance produced pink noise and Jojo would wear this during the day for at least 8 hours.
In time, Jojo doctor told he might be able to develop some tolerance to noise again, up to a certain extent. However, the problem was, in his business, Jojo was on the phone all the time. With the appliance in the ears, his own voice was amplified which caused headaches and ear pain.
Over the years, Jojo has learned to manage his condition. A regular day-to-day activity consisted of wearing earplugs. Jojo could not wash dishes, vacuum the floor, or go to a party without some sort of hearing protection.
Jojo invested in a Bose noise canceling headphones, a couple of musicians’ earplugs, soft foam plugs and placed them throughout his house and in the car.
Other alternative Jojo has tired:
· Acupuncture to relieve the pain
· Chiropractic care for a year
· Naturopathic medicine
Here is Jojo’s last statement to us. We hope that others will gain from what these people go through. Many people even doctors have no clue about hyperacusis. Yet, it has become clear how many people are suffering from this disability.
“I just manage my exposure to noise and always think ahead so I do get frustrated. My family has been supportive of me and in dealing with my condition. It is not easy but manageable. I continue to live as normal a life as I can and I have learned to accept my situation. I still read up and do research about possible cure in the future but I’m ok whether or not it happens.”
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