This story is from The Pulse, a weekly health and science podcast.
Pam Gilbert started hearing things other people couldn’t. Then the sounds took over her life.
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Back in the spring of 2006, Pam Gilbert was having a typical weekend at her home in suburban Virginia.
“It was a Sunday afternoon, I was out doing some yard work with my husband,” says Gilbert, who is now 56 years old. “Some neighbors stopped by, we were talking, and I felt like somebody was pulling me to the right, like they had a rope tied around my shoulders and were pulling me…and I asked them if I was leaning. They asked me had I been drinking, and we all just thought it was funny because I was leaning to the right.”
Gilbert doesn’t think too much of it at the time, but the symptoms don’t let up.
“And within a couple of days, I wasn’t able to walk. I had severe vertigo, I was vomiting, and it got so bad that my husband took me to the emergency room.”
At the ER, the doctors don’t find anything out of the ordinary. They diagnose her with an ear infection and send her home, but a few more weeks pass, and the dizziness is still there.
“I could not drive a car, I wouldn’t have been able to pass a sobriety test. I was just really unsteady. Felt like I was in a funhouse, but not so fun.”
Next to a megaphone
The days and weeks go by, and Gilbert figures out a solution for her dizziness. If she rotates her body, rather than moving her head to look at something, she doesn’t feel unsteady.
“And so I was moving much like a robot would.”
And that robot movement, though a bit bizarre, settles everything down. The vertigo subsides and she is able to get back to her regular life, back to raising her two kids and Girl Scouts and the neighborhood association she volunteers with.
Whatever this spell was, it seems to have passed, as long as she keeps her head locked in position.
But as time passes, Gilbert notices something strange starting to happen with her ears. Her hearing becomes extremely acute, and she starts picking up sounds she never noticed before.
“One day, I was upstairs in my bedroom—we live in a two story house and we have a basement—and I looked at my husband, and I said, as some wives will do, ‘honey, the faucet in the bathroom is dripping, can you go turn it off?’
“And since his side of the bed is closer to the bathroom, he assumed I meant the sink in our bathroom. But what I could hear was, it was the sink in the basement had a dripping faucet, and I asked him to go turn it off. And he was like, ‘you can’t possibly hear that.’ And sure enough, he went downstairs, and it was dripping.”
It was as if Pam had developed a superpower. All these normally muted noises of daily life start catching her attention.
“I could hear when the kids would roll over in bed, even though they were two doors away, my door was closed, their door was closed.”
She could hear every mouse scurrying through the walls.
“If there was a leaf on the roof, I heard it.”
Her hearing begins to take over her life.
“It is kind of like, you know how birds and bees can see different colors because they just have that ability? I could hear sounds that other people couldn’t hear.”
But as charming a skill as this is, it quickly becomes a problem. “I noticed the sounds began to hurt,” she says. “And it became a psychological fear of sound because I could hear everything.”
The telephone became unusable, morphing into a megaphone blast up against her head. She couldn’t go inside her kids’ school, because teenager screams and the echoes off the linoleum were like daggers.
So Gilbert decides to go back to the doctors.
“I was seeing all the ear specialists, and I went to a neurologist, who told me, I hate to say this, but he said, ‘you are just a bored housewife looking for attention. Here’s a handful of pills.'”
During the next few months, the external sounds would be joined by internal sounds, by noises coming from inside her own body.
“I had this booming heartbeat in my ears,” she says. “I had this tinnitus, this ringing in the ears…A constant note, just like a blaring horn in my head.”
All day, every day, a symphony of noise.
“Those sounds were unshakable. There wasn’t any way to turn them down, they never went away. I could hear the bones in my neck cracking, kind of like sandpaper. At one point I could hear my eyes move.”
Yes, eyeballs. When Gilbert reads a book, the tinnitus in her ears starts correlating with her eye movement across the page.
“So it would be squealing ’til I got to the end of the line, and when I moved my eyes to the beginning of the next line, it was a different kind of squeal. Just as painful, just as loud, just a different note.”
Pigeons to the rescue
By 2008, Gilbert is basically existing as a hermit. She’s avoiding all public settings, turning down dinner invitations and not going on Girl Scout trips. She also begins to develop a system of signs to communicate with her husband and kids, who know there is something going on, but don’t fully understand the extent to which she’s suffering.
“This isn’t anything that talk therapy is going to help with, there’s not a pill that I can take. I’m the bad kind of crazy. I can hear things that other people can’t, so I’m really, deeply disturbed, and I have to hide this from everyone.”
At this point, the only moments of relief came in the evening, when she would put on talk radio.
“So I would turn on NPR. All things Considered was music to my ears, because it was so beautifully matched to the sounds going on in my head. It would mask all those sounds, and I was able to sleep.”
A common experience, surely.
Anyways, Gilbert would soon find herself back at the doctor’s office, though not for her hearing issue.
“I don’t know, maybe I had a sore throat or something, and I went to see my family doctor, and he just took me by my arms and he held me and he got up in my face, and said, ‘there is something very, very wrong with you, and we have to find out what it is, because these medications may hide the next symptom that leads to your diagnosis.'”
At her family doctor’s urging, Gilbert ends up in the offices of Johns Hopkins Medicine in Baltimore, Maryland, where she sees Dr. Lloyd Minor, an expert in disorders of the inner ear.
“Our inner ear, our vestibular system, is like our gyroscope,” says Minor. “It tells our brain how our head is moving, and we use it all the time.”
For instance, he says, it does this when we drive a car along a bumpy road, or go for a jog.
“When you are running, your head is bouncing up and down, but you don’t have any trouble looking at road signs, at other things in front of you. And the reason you don’t is that for every head movement, that head movement is being detected by your inner ear, and your eyes are moving in a way that compensates for the head movement.”
The vestibular system is at the heart of how we move through the world; how our senses, including sight and hearing, work together to feed the brain information about where we are.
In the spring of 1995, a patient came to Dr. Minor with a vestibular system problem.
“I saw a gentleman in his mid-50s who came in with kind of a bizarre complaint. He said that when he sang in the shower, he saw things moving. And he was very specific about the way in which they moved. He said they are moving as if they are moving about a clock face.”
The shampoo bottle, the loofah, would rotate when he started singing.
“And in fact he said, ‘look, I can show you. If you just give me something where I can put a loud noise in my right ear, I can show you because when I’m looking at myself and loud noises [occur], I see my eyes move.'”
Minor grabs a piece of equipment, makes a tone in the patient’s right ear, and he sees the guy’s eyes jump.
“They weren’t random eye movements. They were very tightly timed and linked to the sound, and they were always in the same direction.”
And this fact that they moved the same way each time turned out to be a huge clue for Minor.
The human vestibular system is composed of three tiny, little fluid-filled canals. They’re so small, all three of them would fit on top of a dime, and they’re tucked inside the inner ear.
Minor suspected that the canals must somehow be involved with the way this guy’s eyes were jumping, and he had this suspicion because of, well, pigeons.
“Pigeons became involved because the way people over a century ago discovered that the inner ear had a role in control of eye movements and in balance, a lot of those original studies were done in pigeons.”
Researchers, including an Italian biologist named Pietro Tullio, would make a hole in the pigeon’s bone that protects the canals.
“They would remove the bone from one canal, and then they would push on the membranous portion of the canal—the fluid filled portion of the canal—and they would observe that the pigeon’s eyes, and often times, its head, moved in the plane of that canal.
Just like his patient who sings in the shower, the eyes of the pigeon would jolt.
“And therefore, it seemed to me there had to be a similar problem in these patients. Somehow, the bone was likely to be missing over that top balance canal.”
Minor’s theory, which was later proven by CT scans, was that this tiny area of bone, for whatever reason, isn’t there in patients with this condition, which he dubs Superior Semicircular Canal Dehiscence (dehiscence being the word for rupture or opening).
And because there is now an opening, sound waves, which usually travel through the middle ear and then into the inner ear without disrupting the canals, instead rumble right through them.
“[Sound] is supposed to be moving from A to B, but then all of a sudden C opens up. And now it can move from A to B, and it can move from A to C.”
That’s what explains why patients have heightened sensitivity to external sounds, and also the noises inside the body, like the muscles that move our eyeballs. It’s like a seal that is supposed to be in place to protect us from these noises has a hole torn through it.
“We can think of the vestibular system ordinarily as being a black box that we never have to think about. It is always there, it is doing its job,” says Minor. “Then, when there is this opening, or another problem with the way the vestibular system works, then all of a sudden, everything falls apart.”
‘I’m an animal at this point’
Pam Gilbert’s diagnosis of Superior Canal Dehiscence Syndrome came as a relief, because it meant the problem was in her head, but it wasn’t in her head.
“I just remember Dr. Minor saying you have this condition, and us just looking at eachother, like, holy cow, I’m not crazy.”
Minor explained to her the surgery he helped pioneer, which involves going in through the skull, moving the brain aside, and plugging up the tiny hole in the bone protecting the canal.
“We leave Johns Hopkins, we come home, and I’m like, ‘did he say brain surgery?,'” recalls Gilbert.
The surgery does come with risks, including the chance for permanent hearing loss, facial paralysis, as well as death. But the surgery had been performed many times by 2008, and overall, it’s considered a good option for people with severe symptoms. Gilbert, though, didn’t see it this way.
“You know, when you have this condition, your IQ points just slowly drain away with your sanity,” she says. “My ability at that point to take in complex information, process it, make a thoughtful, reasoned, surgical decision, is just ludicrous. I’m an animal at this point.”
Gilbert, totally exhausted and worn down after years of the cacophony in her head, equates the procedure with a death sentence.
“If I have the surgery, I’m going to die, which isn’t true, but that’s where my two IQ points got me to.”
Rather than opt for the surgery, she makes a deal with herself. A deal she now realizes was totally irrational.
“I think, well, my daughter is in high school now. I can live like this for four more years, and then I’ll just be gone. It was magical thinking, delusional thinking. I would just disappear. I wouldn’t have to live like this anymore. [I] Never said the word suicide, but I was just going to be gone, because once my kids were through high school, I will have done my duty, and I would just be gone.”
And then September rolls around of her daughter’s freshman year in high school, and autophony kicks in.
“Autophony is this symptom where you can hear your own voice. And well, everyone can hear their own voice, but with this, you hear your voice as loud as you can think of, like a rock concert.
“That’s what your voice becomes, only it’s a rock concert of fingernails on a chalkboard.”
Speaking in anything above a whisper is like a stick of dynamite going off in her head.
“Certain letters make certain vibrations, I couldn’t say the letter M,” says Gilbert. “Too much vibration.”
When your name is Pam, and you lose the letter M, you are in bad shape. Living, being awake, existing in this world had become a total nightmare.
“It just sounds so silly, but it’s torture. Superior Canal Dehiscence Syndrome is torture. There is just no pretty way to make a cute analogy. It makes you want to kill yourself in the end. And if you don’t get diagnosed, that’s what some people do.”
Out of options, on March 4th, 2011, Gilbert goes in for surgery, a procedure she’s convinced will kill her.
“And I went, asked the anesthesiologist to give me something for nerves, cause I’m having brain surgery, and I kissed my husband goodbye. And I thought that was it. That I couldn’t do any more. I said goodbye.”
“So, imagine my surprise when I wake up from surgery. I’m awake, and the world is peaceful.”
Gilbert describes feeling a sense of calm, and the immediate realization that the surgery had worked. That her hearing was restored to normal.
“I said the letter ‘M.’ I said it quietly, I don’t know that anybody heard me, but it was just the letter ‘M.’ It wasn’t this vibration machine turning my brain to mush. It was just another letter. It was amazing.”