With the help of compassionate doctors and a strong support network, Jason, a trustee at Mass. Eye and Ear, grapples with his chronic condition.
For the past few years, Jason Cohen has been fighting a seemingly invisible battle — with tinnitus.
“The thing people struggle with is that you’re walking around with something that no one else can hear or see,” Cohen says, “So the first thing people say is, ‘Is this person crazy? It can’t be that bad.’”
Ringing in the ears
Tinnitus is a persistent, painful “ringing in the ears.” There’s no blanket cure, and the anatomical cause of tinnitus is still largely unclear, although it’s been long believed that tinnitus is a result of hearing damage.
Researchers at Mass. Eye and Ear have hypothesized that the loss of neuronal activity, from either auditory or non-auditory centers, can result in a re-adjustment in the brain. When the nerve cells in the brain stop receiving sensory input, they may overcompensate by amplifying incoming signals and, in some situations, causing the perception of sounds when there are none present.
A lonely experience
Jason was diagnosed with post-concussive syndrome after a bad fall while skiing. One of the symptoms of post-concussive syndrome was the ever-present ringing in his ears.
“It sounded like a high pitched tension wire wrapped around my head,” he said. “And there was no way to concentrate or sleep.”
Jason began feeling frustrated with how dismissive colleagues and doctors were of his condition. He was surprised by how many people treated it “as if it wasn’t a serious disease or condition.” He says patients with tinnitus are often passed along to psychiatrists because they are “considered a nuisance.”
It was also a lonely experience: “My biggest struggle was I didn’t have someone who had it or anyone to really speak to about it. So I felt kind of like I was the only one in the world trying to conquer something.”
Finding hope, support
In New York, he came under the care of Dr. Abraham Shulman, an otolaryngologist of SUNY Downstate who showed him compassion. Dr. Shulman suggested that Jason meet with the Lauer Tinnitus Research Center, leading him to Mass. Eye and Ear.
He met Dr. Brad Welling, who listened to Jason’s struggle with tinnitus.
“Tinnitus is such a challenging issue,” Dr. Welling said, “It takes the teamwork of scientist, patients, and clinicians to get to a solution. We are grateful to both our patients, who are willing to help us find better solutions, and our research team who are focused on understanding the underlying mechanisms which result in tinnitus.”
Jason said Dr. Welling’s patience and compassion for his condition made coming to terms with it less difficult.
“You start getting mad at the world for not being able to have empathy for what you’re dealing with,” Jason said. “It was nice to see and hear that you’re dealing with a doctor who understands what you’re dealing with.”
Although treatment for tinnitus is still an unmet need, Jason says having a support network has helped his well-being tremendously.
Making a difference
In his new role as trustee at Mass. Eye and Ear, he hopes to help others with tinnitus find support when they need it.
“I can understand why alcoholics have sponsors. I think, with tinnitus, it can be quiet one day and the next day it can be a mess. So I feel like people being able to reach out to trustees like me and being able to talk on a bad day would help them get to a point where they can embrace their tinnitus.”
As for those still struggling with maintaining a normal lifestyle with tinnitus, Jason has some advice:
“As long as you have a good support system and people you can talk to, you will get through it.”
Jason Cohen is the CEO of Halen Brands and a trustee at Mass. Eye and Ear.
Mass. Eye and Ear physicians and researchers are hard at work to address the clinical problem of tinnitus. There is still much work to be done. If you would like to make an appointment to see a Mass. Eye and Ear physician about ringing in the ears, please call 617-573-3954
I, too, suffer from this. Jason, explained it so well. In 2007, while Dr. Welling was at Ohio State, he did surgery on my ear and I got a staph infection which left me with the loss of hearing in my left ear. At the time, I was a teacher and have since retired. Classroom noise was a problem. A good support system and people who understand is so important. Yesterday, I was in a coffee shop. Upon entering, my ear was calm, no ringing. Once the noise level increased, the ringing began and remained so loud that it was hard to diciphed who was talking or what direction it was coming from. Yes, you learn to cope, but it’s very annoying to say the least. Finding a quiet place to sit, away from all the noise, usually helps. Dr. Welling was so caring and compationate during my recovery in 2007-2008. I’m in the process of sending him a recent audiogram. Thank you for your article. Mary Shafer
Thanks for reading, Mary, and thank you for the kind words about Dr. Welling. Wishing you good health and all the very best.
I also have the issue and can totally sympathize with Jason. Its turned into a problem with me dealing with sounds in my environment. Many high pitched sounds are driving me to the point of extreme frustration. Its no fun.
Im surprised at the lack of knowledge about a problem that effects 50 million people in the USA alone.
I have been dealing with a pulsating tinnitus since a short time after I turned 60. It’s been 3 years and progressively worsening. I am unable to concentrate, hear / listen when people are not talking loud enough over this noise in my head, let alone outside noises. Even when I talk about it with family, they are unable to understand much about it. I feel as though I am on a deserted island where no one can hear me. I will be seeing Dr. Stankovic in the very near future. I haven’t had much hope but after reading more about others who are living and trying to deal with this problem, I feel maybe there is some hope where I felt there was none. Thank you…
Kimberly Palmer
Hi Kimberly, thanks for reading and sharing, we’re sorry to hear what you’ve been going through. We’ll be pulling for you!
I have been calling the 617-708-7844 number to see about arranging an appointment to see a Physician about my tinnitus. I have not been able to get anyone. Is there another number I should be calling?
thank you,
Tom
Hi Tom,
Thanks for reading, we’re sorry for that. Since that post was written in 2017, that number is not active. Our hearing specialists can be reached at 617-573-3954, or visit our website for more info. https://www.masseyeandear.org/specialties/hearing-and-balance. I’ve updated the blog post to remove that number, thanks so much for flagging.
Hi Ryan,
I was able to make the proper contact and get an appointment for November 24. I’d like to echo the sentiments of others that finding this resource is enormously helpful. I have had pretty severe tinnitus for over a year now, and I fully embrace the idea that it is a brain issue, not an ear issue. And for me it has been life altering. I am an appellate lawyer which means that I spend my time researching and reading the law and using what I learn to write sometimes long and complicated legal arguments, trying to make them look simple. Prior to the tinnitus I was considered to be very good. With the tinnitus I am not the same lawyer I was before, and I wonder if I will ever be that again. I’ve recently learned that chronic tinnitus essentially keeps the brain on alert all the time, preventing it from refreshing and recovering.
I have experienced, and do experience, both mental fatigue that affects my concentration, memory, and creativity – and extreme daily physical fatigue.
It literally is disabling for the type of work I do – and the physical fatigue affects the quality of my life even when I am not working.
What made all of this worse is that I had no medical professional who understood tinnitus, or frankly, cared about it. You may be able to imagine how grateful I am to know that there are people who are studying it, and physicians who understand it and can offer sound advice on how to cope with it. The possibility of improved ways to address my tinnitus, and restore my brain as much as possible gives me a hope that did not exist before.
And I will say here and now that I would gladly participate in any clinical studies that might help me or others. Thank you for your efforts to fund this research – and treating it as the potentially serious health condition that we all know it can be.
Tom
Thank you for reading and for your thoughtful comment and response, Tom. We’re glad you got an appointment for this month, and share your goals and desires to study this disabling condition in the hopes of finding an effective treatment.
Tom i saw this post about tinnitus . I have a really bad case . i got it from Covid . I know you post ed on the blog about how bad it was for you. i’m a mess from this . Does time make any difference in tolerating it …… after some time ? i’ hope your adjust some. mine is constant. Meds for anxiety tone it a bit but one they wear off it starts in intesnsity again.
Tom B
each time i have been injured my tinitus gets more intense. it used to quiet down and go away . it would be triggered by certain bends twist of head neck… tinitus w/ stars metal flecks raining down in vision field, dizzy, faint-ish, balance, breath, but now since last fall backwards w sport equip in my arms fell backwards onto concrete floor, hit head, my ears are hissing buzzing ringing high frequency radio sounds, headaches, eyes off… vision changes, vision purple hues blue hues, peripheral issues, vision is not synched with my brain… like a slow mo connection when we know eye normally would have finished seeing something say to my side and now as i look out front i should instantly see whats out front… but its like a dizzy slow motion digital frame by frame for eyes and brain to catch up… cant read glass scripts changing , have variety of cheaters to accommodate the issue of the day… my scripts make me very dizzy nausia… apparently talk loud… swallowing issues, tmj, broken teeth, head scalp so sensitive to touch at times, cant brush hair and teeth so painful in neck… hair is rats nest mop on top of head i wear hats to camouflage it. if i try to comb it out i ache for days and weeks depending on how much i try to unravel. pain is so intense i cant handle it. balance issue in shower. can not bend head to look at armpit as one would to shave underarm/pits… brings on metal fleck rainshower in vision field loud tinitus dizziness nausia. no thanks. night driving red taillights blur purple or blue depending on how tired i am from physically trying to accomplish things, walking on hard surfaces concrete and or soft beach sand trigger back pain neck pain and more tinitus issues. i try to just go to bed to sleep it off.., but there is no peace. the hissing swishing buzzing sound at times accompanied with twitching sensation don let up.
so tired just so tired. i choke. i find certain activities bring on choking on my own saliva as though i dont know enough to swallow
tinitus gets louder.
trying to find appropriate dr at mass e & e for my issues. have concussion whiplash too many times. the symptoms get worse each time last longer more intense
its like i am stupid, or alzeimers or… but its not any ither issue but the blows to the head /whiplash because if it were a disease all these years id be a super dummy… im just exhausted from the pain the tinitus the lack of sleep. its certainly effecting my life. cant accomplish basics. need help.
Living with tinnitus. Would like to see a physician who can help me cope or cure the matter.
Is there anything that can help one fall asleep noise pattern best for tinnitus?
I have tinnitus, hearing loss and ear fullness that I noticed after neck manipulation during a massage. I have an unaligned C1 and C2 by 1.75 degrees. Could this unalignment cause these symptoms?