INTERVIEWS BY MARK ALLEN, ILLUSTRATIONS BY TARA SINN
Do you know someone who says they don’t like music? Someone who doesn’t own a single CD or an iPod? Are they always turning the radio down? And when pressed on the subject, do they shrug and say they don’t really “get” music? Never could quite figure that person out, could you?
Your friend’s weird lack of taste could be the result of melophobia (fear of music), a little-understood but very real neurophysiological condition. People with melophobia have particular physical characteristics that make them unusually sensitive to sudden changes in pitch and tone. Music is, not surprisingly, one of the most concentrated forms of this sort of stimulus. And music is all around us. Scary! Even scarier, perhaps, is musicogenic epilepsy, a very real condition in which music can bring on intense seizures.
We wanted to know more about music being a demonic force of tangible fear and pain, so we talked to a doctor who deals with people who suffer from these conditions, a melophobia patient, and a woman with musicogenic epilepsy. Strap on your noise-canceling earphones and read on…
Dr. Marsha Johnson, audiologist and clinical director at the Oregon Tinnitus & Hyperacusis Clinic, has treated those who suffer from melophobia, and the conditions that lead to this perplexing phobia, for 13 years. We recently spoke with her.
Vice: So, melophobia actually exists.
Dr. Marsha Johnson: Yes, it does. Often it is a condition induced by a negative encounter with music or musical instruments, like a loud concert that produced tinnitus or ear ringing in a person for several weeks. This could be so frightening and disturbing that the person would avoid all concerts from that point forward. Another example is the professional musician who plays near a loud instrument and, over time, develops severe hyperacusis [sound sensitivity] and suffers pain afterward, which intensifies with each exposure. Eventually, the professional stops playing music altogether.
Are tinnitus and hyperacusis the main causes of melophobia?
In most cases, I would say yes. More specifically, the most likely cause of these conditions are loud sound waves that crash right through the middle-ear system, which includes the tender, thin membrane of the eardrum as well as a very tiny chain of bones that includes movable joints, cartilage, tendons, and muscles, all of which can be strained, sprained, or overextended.
How do these conditions cause the experience of listening to music to be painful for the person?
Along with severe tinnitus—the type that can keep you awake for months and make you totally unable to concentrate—hyperacusis can be painful and provoke headaches or even eye or jaw pain.
So the avoidance of the stimulus leads to the avoidance of sound, which leads to the avoidance of music, and then melophobia sets in. Is melophobia curable?
Well, tinnitus has no cure at this time but there are some wonderful management programs for improving the loudness, intrusion, and negative impact of tinnitus. This includes Tinnitus Retraining Therapy (TRT), which was developed by Dr. Pawel Jastreboff, and Neuromonics Oasis therapy, which was developed by Dr. Paul Davis. These are the two most-used tinnitus treatments in the world at this time. Hyperacusis can be improved, most of the time, with proper desensitization therapy using Jastreboff’s TRT principles, and then the person is often able to recover from fear of music or musical events and begin to enjoy this important part of life again.
Please outline for me how we get from tinnitus and hyperacusis to melophobia.
Most people who have had a serious encounter with tinnitus or hyperacusis are quite motivated to avoid whatever seemed to have triggered it. So melophobia is a real concern among this population and, to some extent, quite rational. Those who have damaged the hearing cells in their cochlea are going to have persistent permanent hearing loss, and this can lead to phobias and avoidance beyond a reasonable scope of practice. I had a male patient from Chicago last year who had been a drummer. He quit his band and used earplugs all the time, running away from noisy buses and never accepting party invitations. But he was actually making his own situation worse through overprotection! Melophobia patients must often be counseled and supported to overcome irrational beliefs. One important fact to keep in mind is that many people with tinnitus or hyperacusis do not have significant hearing loss, and perhaps just a very mild case.
I’m currently working with a young woman who is totally housebound in an eastern state due to her severe loss of tolerance for all sounds, including music. She cannot leave her bedroom for more than a few moments. She was enrolled in college and studying singing when she developed a sudden onset of a severe arthritis condition, affecting her joints with swelling and pain. Over time, she could no longer walk due to the pain, and she was diagnosed with reflex sympathetic dystrophy. She tried to remain in school but was unable to navigate the campus. Only the fact that her friends carried her everywhere for the last few weeks enabled her to get through her second year. She had to give up her ambition for a musical career. She dropped out of college and is now able to listen to just 15 minutes or so of anything each day, including human voices or music.
This sounds horrible.
She is terrified that she will be exposed to a sudden noise like a radio, which can cause great pain and distress that persists for days. She wears earplugs most of the day and limits her exposure to even softer sounds such as fans or outdoor noises. We have started with reducing earplug use and opening the window across the room for two periods of five minutes per day. Her fear of sound and music is so severe that the psychological beliefs are now even stronger than the physical reactions, so she is also trying some counseling therapy via the telephone for 15 minutes per week. This young woman is unable to visit medical offices and has a severely limited life at this point in time. She is 23 years old.
Are you familiar with the condition known as musicogenic epilepsy? I’m thinking of a woman who was in the news in 2008. Her name was Stacey Gayle, and she was from Queens, New York. She had seizures every time she heard the Sean Paul song “Temperature.” She had to have a brain operation to correct the problem.
Yes, although I’m more familiar with the term “audiogenic seizure disorder,” which falls into the hearing category. It’s also known as vestibular hyperacusis. Certain sounds or tones, aka music, can stimulate the central nervous system in a way that provokes a brain seizure. I have seen quite a few of these cases over the years. They are often induced by a closed head injury or an illness. I recall one fellow who was in a rear-end whiplash car accident. A 2,000 Hz pure tone was presented to his left ear in a sound booth, first at zero dB, which is inaudible, and then raised slowly one dB by one dB; he went into a grand mal seizure at about 20 dB—which is a very soft sound. Another such patient, following a similar car accident, suffered complete loss of consciousness when trucks roared by, with their lower-frequency rumbles. She would fall to the ground, senseless. In that case, I suggested the neurologist conduct a resting EEG, and this showed that her brain was normal when resting in a quiet environment. When an audiometer was attached via headphones and a stimulus at 500 Hz, a low pitch, was presented, her brain EEG showed epileptic-type activity.
How common is this stuff?
These cases are rare. Another common diagnostic term for it is Tullio syndrome. Most often, people who suffer from it end up in dizziness or balance clinics.
What is the genre of music that you most often hear complaints about? Like, say, rap music booming out of cars on the street with subwoofers, or Muzak playing in a department store?
Even normal hearers often are seriously annoyed by the loud, booming rap music coming out of cars driving down their street at night. The lower-frequency energy of those big speakers passes right through solid objects very easily. It rattles our very bones! But the biggest complaint for most music-loving people with melophobia is that they miss their music very much. It is as if a part of their soul has been kidnapped and held hostage.
Are your patients who are musicians mostly rock musicians or nightclub DJs?
Oddly enough, most of my musician patients are in orchestras, philharmonics, or symphony groups—or are piano players. These instruments are often quite loud, and the whole group productions are very loud, and I believe that the practice times needed to acquire great skill on these instruments are longer. Many professionals playing violins, flutes, cellos, and so on begin very early in life, so their exposure time may already have been decades long when they first begin to perform professionally. I believe that among the guitar bands and rockers, however, the belief that they will incur hearing loss and hearing damage is quite well understood and, to some degree, expected. An occupational hazard, you might say.
Could someone be suffering from tinnitus and hyperacusis and not know it?
Yes, and there seems to be deep fear and shame associated with these two conditions, and that can lead to melophobia as well. Often people feel very guilty and stupid for putting themselves into the situation that caused it in the first place. “I knew I should have left the concert, my ears were burning, but I was too embarrassed to ask my date to go, so I foolishly stayed.” The patient is also often afraid that they will be viewed differently at work or in social settings, as everyone else enjoys the New Year’s Eve party or the convention, and they cannot. Most often, these individuals will just refuse to attend such events and will quietly fade away, becoming prisoners in their own homes in some cases.
What are the signs and symptoms?
Insomnia is one of the biggest co-conditions with tinnitus and hyperacusis. Also look for the use of earplugs beyond what seems normal, and people avoiding movies or parties or consistently arriving after things are over, dinner is done, or the musicians are packing their gear away. I can recall patients who would never dream of listening to any radio, stereo, or live music performance and who would go to great lengths to avoid these things. There was even one person who walked his daughter down the aisle in silence at her wedding, then kissed her and exited through the nearest door to observe the rest of the ceremony from afar.
Do you think it’s possible for someone to develop a lifelong fear of music?
Yes, though it’s not just music. It really is the sound and noise of just about everything in the world. Music is simply often the main focus since we like to listen to it loud, and it has higher-pitched tones and variations and is often unpredictable.
There seems to be more and more obtrusive music and noise in public in our everyday lives. Would you say this is bad?
Yes, unequivocally. Our systems were not designed to withstand this onslaught every minute of our lives. We need to adopt the more advanced European standard of an alert-action sound level of 80 decibels, instead of the 85 we have now. In Sweden, I saw kindergartens with a wall of lights working as sound monitors: Green lights came on when voices were quiet and moderate, and yellow ones flashed when the noise increased. At 80 dB, red ones lit up. Visually, the children could see when they were being too noisy in the classroom. They could self-monitor.
What about MP3 players?
The use of things such as iPods, which are forcing sound right down into the ear canal with the newer, tighter ear buds, is going to produce hearing loss and other auditory issues at far younger ages than we’ve seen in the past. This is going to be an epidemic of great proportions in our world. We also must educate ourselves and our children that making music that is too loud is not a well-thought-out activity. Children in bands or orchestras should wear ear protection in the form of musician’s plugs, which come with filters of 9, 15, or 25 decibels. We know there is a relationship between tinnitus, hyperacusis, and noise exposure, so let’s work harder to prevent those cases when we are easily able.
If someone suspects they may have developed melophobia, what would you suggest they do?
Visit the nearest tinnitus and hyperacusis specialist if you believe that your problems are related to these two symptoms. After a full evaluation, you may be referred for cognitive behavioral therapy as part of your rehabilitation. An MD should also be consulted to rule out any ear disease or problem that would prevent recovery.
John Loudenback is a sound engineer who enjoys all things music- and music-production-related. He designs and builds high-end audio gear: amps, loudspeakers, and the like. He likes spending time with friends, family, and his cat, Ubie. He also enjoys music, from classical to punk (favorites include Bruckner, Shostakovich, Mahler, Richard Strauss, X, Radiohead, Keren Ann, Procol Harum, Roger Waters, and Pink Floyd). Several years ago, John began dealing with melophobia.
Vice: What led to your sensitivity to sound?
John Loudenback: A high-frequency power-line noise was causing a problem with a stereo amplifier my dad and I had bought and were working with. The sound quality was excellent and loud, but we’d find our ears hurting and getting more sensitive every time after we listened to it.
When did you first realize you were avoiding sound?
About nine months after using that amplifier a lot, I developed an extreme sensitivity to sound. I soon learned about Tinnitus Retraining Therapy and also about phonophobia, or the fear of sound. I didn’t accept that I had phonophobia until I got some guidance via email from a hyperacusis specialist in the UK. People generally don’t like the word “phonophobia” because they think it’s psychological. It’s really a neurophysiological problem.
How did this lead to a phobia of music?
Due to my bad past experiences with music, I eventually developed a strong aversion to it and completely quit listening to it. I kept trying, listening to my car stereo, going to music stores. Inevitably my ears would get irritated or hurt. Loud music became a real problem for me. This condition prevented me from taking part in my audio hobby or activities with friends and family, as I could no longer eat out or go anywhere that had music playing. It was devastating!
Were there any particular types of music that made it worse for you?
Rock music was hardest for me because of the types of processing and studio effects done to these recordings. Cinderella’s “Gypsy Road” was one of the worst offenders for me. The poor quality of the recording made Tom Keifer’s voice sound edgy and bright. Also, classical strings really irritated my condition.
What are some of the things you did to cope in a world that has music everywhere?
Mostly I just avoided those sounds when I could. And when I couldn’t, I wore ear protection. When I started TRT I was living in virtual silence, having eventually retreated totally indoors, where I always wore ear protection. Eventually I learned that overuse of ear protection makes ears more sensitive, and that was my real downfall. Complete avoidance of sounds or music that have caused you problems in the past is also not recommended. So I had to very slowly remove my ear protection. My goal was to gradually let my ears adjust to all the sounds and music I had avoided. This also meant facing some unpleasant symptoms, like ringing and headaches, and thinking positive thoughts. Ears need practice with lots of sounds.
And how are you doing today?
I have made excellent progress! I go outside and go shopping, but I’m still limited in terms of how long I can listen to some music.
What advice would you give someone who thinks they might have developed phonophobia or melophobia?
Don’t overuse ear protection or spend long periods in complete silence. Don’t distress over your symptoms or think bad thoughts. But most of all, seek help from a TRT-trained doctor.
Julie Hope is 63 and married, with five children, “many” grandchildren, and five great-grandchildren. She has had epilepsy nearly all her life. A retired professional caregiver, she has always loved music, but has dealt for much of her life with music being a “trigger” for her seizures—aka musicogenic epilepsy.
Vice: When did you first experience musicogenic epilepsy?
Julie Hope: That would be on my honeymoon, when we went to a concert. I can’t recall the name of the band, but the music was extremely loud and there were people jumping all over the stage. The band’s notes were going up and down and all over the place, very frantically, like fusion rock. I began shaking. The bass drums made me feel like I was drowning, reminding me of a brush with death I’d had once during a status epilepticus seizure. I began to hallucinate. At one point the only thing that I saw was the musicians shaking on stage like leaves, which reminded me of what I must look like during a generalized tonic-clonic seizure. A wheelchair was brought out to assist me in getting back to my room. That was the most memorable musical moment in my life up to that point, and I learned to stay away from that type of music.
What are some of the things you do to cope in a world that has music everywhere?
If something gets in my way, I have always been bound and determined to overcome it. I have tried turning it around and thinking positively, listening to the good part of the music and blocking out the bad.
Well, what for you are the good and bad parts of music?
For me, good music would be something like Sarah McLachlan’s “In the Arms of an Angel,” which I love. The notes sound like a slow up-and-down, kind of moving around me. It feels protective, and I feel like nothing can touch me, not even a seizure. Harp music can also be healing for me, as it is so calming and peaceful. If you can imagine how playing it is, eyes closed and just letting your mind, body, and fingers go to work, then nothing can touch you, not even a seizure.
I relate bad music to the sound of a loud thunderclap: silence, and then a loud bang or shriek from an instrument, which leaves me in terror and fear. An example of this would be any kind of a marching song, like those played at an army funeral. The horns, bugles, muffled drums, saxophones, and the feet stomping. To me, this has no real “song” to it, just all these loud sounds. Also, I love Elvis, but there were some songs where he got kind of wild and loud that I couldn’t handle. I can’t recall those Elvis titles because my brain wouldn’t allow me to think long enough when listening to something that I think might cause a seizure.
Do you feel like you’re missing out?
There are some concerts that I would love to go to, but the phobia comes into play. Everyone speaks so much about AC/DC, and I would love to go and check them out, but from what I’ve gathered they would drive me to a seizure for sure. Oh, and Ashley Tisdale! All her music is bad for me. The instruments and noise in the background drown out the song itself. You can’t understand what she’s saying! All those effects and noises numb my brain. If and when I see and hear her stuff on TV, I have to leave the room or change channels because I might have a seizure. The brain is funny, and so different from person to person.
What would you tell someone who thinks that they might have developed melophobia?
First ask yourself if you simply dislike music, which some people do. But if you really love music and something is getting in your way, try and find out what is causing it. Me? I’m stubborn, so I was determined. I eventually discovered most of it was something that happened that I’d blocked out. So you need to find out the root cause of your melophobia and go from there.
A list of resources can be found at www.tinnitus-pjj.com or the brand-new Tinnitus Practitioners Association, at www.tinnituspractitioners.com.