Table of Contents
One Month Before SCaLE#
A virus had just begun its spread. In a time when uncertainty was about to flourish, I got sick.
This was well before regular testing was available and premature for understanding any patterns in the virus. I had something though, which in hindsight looked to match its traits: internal upper respiratory infection, a week into it i was complaining about a loss of taste, and experienced feverish symptoms. No accompanying gastro-intestinal problems and no significant lung issues.
This happened in February before I gave a talk at Southern California Linux Expo 18x about improvisation practice in music colliding with how we learn to understand operations in complex software systems. It is a conference where I have spoken and participated as both an attendee and vendor. It is my favorite because of the breadth it reaches across professional and scholarly boundaries. I have formed some of my strongest professional and friendship bonds in and around SCaLE. I was beyond excited to be speaking to a large local audience about my perspectives and the Practice of Practice, being sick wasn’t an option.
Poke, Pak, Pot#
I first went to my acupuncture and wellness doctor to ask if he had any ideas about tinnitus, because lately it had been stronger. He examined my ears, already masked up himself, and told me I appeared to be “on the verge of a big ear infection”. He couldn’t do anything about the tinnitus but the developing infection probably was related. I got some pokes in the face to help ease the congestion, I’m not sure it did anything.
My primary care doctor also saw me and gave me Zithromax. His backup was oral steroids, which I resorted to, because the antibiotics were not working a lick. Clearly this was viral, and the steroids put me in good enough condition to do the talk.
Everything we were hearing about the new virus seemed to put me out of reach so I didn’t think twice about going and speaking. California had it much earlier, I’ve come to learn. Yet another ambiguity of my novel sickness.
The worst was already over by the time testing was available. I didn’t know at the time that I could get an antibody test, but I did have a blood test for allergies. It was not conclusive in respect to this infection, although I learned that I am slightly allergic to dogs and cats and roaches. I live with two cats and this was nothing like any kind of allergic reaction I’ve ever had, which usually shows up as hives.
My doctor referred me to a local otolaryngologist, who agreed an infectious state was lingering in my sinuses and ears. We could only attend to the symptoms until it lost its grip on me. He prescribed a multi-month regimen of azelastine and fluticasone nasal sprays.
By the fall the neti-pot was thrown away, no longer glued to my face every four hours. But one thing had not gone away: increasingly bothersome and strangely “triggered” tinnitus.
Very Loud Things#
Now, I am a musician who has had quite a large amount of performance opportunities involving VERY LOUD THINGS. I’ve been in the biggest of college marching bands, brass-and-drum pep bands in basketball stadiums, experimental noise concerts, DJ’ing and attending underground parties and art collaborations with little care for volume control. I definitely crouched in my share of bass bins in Chicago basements and LA warehouses. So yeah, I was expecting to have some ringing as I age.
However, this was different. Things were sounding fuzzy around the edges. As it began slowly creeping around my consciousness, I also began to notice that it was impulse-driven. Not necessarily by high volume or sudden sounds but by continuous sounds, things that shared a particular frequency dimension.
I also noticed a particular sensitivity to reverberant things, where harmonics of an already bright or sonically rich sound become re-emphasized and strengthened by specific acoustics. Like dice being rolled from a cup sounds much larger than with bare hands, where the sound is muffled but still high in pitch. Our nightly Yahtzee and Backgammon games ditched the cup.
Another peculiar aspect is how sound will shape the sonic profile of my acoustic perception and then stick that way, much in the same way you hear piano notes continue to sustain when holding down the damper pedal. When this is done, the notes do not end abruptly, which they would if no piano pedals were held down. Instead, the piano notes’ envelope sustains and then fades away in the acoustics of the piano. The result is that notes played in succession overlap each other in sound.
This is what I perceive happening: something holding down the damper pedal to a certain frequency set in my perception so that when a particular frequency set is activated it piles up on itself.
Only instead of a nice harmonically pure overtone series (even with dissonant notes) I hear an overdriven, pushed-to-distortion version of the initial sound as an impulse rippling through the frequency response of my ears and not going away until long after the original sound ends. Sometimes when this is caused by droning fan sounds it takes a bit to get going, and I can hear bits of it engage with this endless-increasing-in-pitch shephard tone that fades up into the high-whine of the noise.
The sonic artifacts of this condition became louder and more stringent and seemed to be upholding and strengthening the tinnitus.
Plus they were happening more often. Every evening as I played Subnautica: Below Zero to escape, I grew so accustomed to it that my mental model of the game included a sound track featuring the underlying cacophony in my head.
Crash and Slide#
It felt as if my ears were being gradually destroyed. I was devastated. I cried every day. I yelled at people. I probably would have kicked small animals on the sidewalk if I weren’t being self-isolated because of a pandemic raging around us.
I suddenly lost my job after returning from vacation that summer, and could only continue any treatment when I was able to re-constitute my insurance plan with a new gig.
That December was around the time I told this ENT, something is not right. The infection was cleared, he confirmed this. But the tinnitus he and the others blamed on the infection and clogged eustachian tubes was stronger than ever, getting worse it seemed.
I couldn’t explain well enough what was going on and it was clear that I was out of his range of expertise. After referral to a neurologist was a dead-end, he pointed me to the University of California Irvine Head and Neck Center. Just down the road, in Orange. He explained they would probably give me some drugs and maybe send me to a behavioral psychologist.
No Such Thing As Silence#
So in the beginning weeks of 2021, I learned a new word: hyperacusis. What I understand about it now is thanks to the audiologist at UCI, who laid it out in terms that resonated with me like nobody else had been able to. My experience with her in that anechoic room was as illuminating as it must have been for John Cage when he took notice of the bodily functions and internal sounds that silence refuses.
The astonishing thing about Cage is how this was a catalyst to a turning point in his career; there was no such thing as true silence. That we humans, the ones listening, are always pulsing with blood and ringing with nervous system activity.
One of the core features of his music after this time is that it accepts indeterminate simultaneity in our acoustic environment as part of the big picture of music we experience. In other words, when there’s a tacit in performed music, there isn’t actually any silence at all. His scores are arrangements of sonic experiences, where he happily lets other unexpected sounds participate.
Far too often this gets taken to the extreme that anything can be music. That there is not a fair distinction between “noise” and “musical” sound, they are one and the same. I don’t think Cage really meant this. I think he wanted humanity to listen and give every sound its right to exist in the world. So that the sounds can be musical together, or in some ways so that we can find the beauty in something as ugly as noise.
Audiogram No.2, Part I#
My recent audiogram at UCI was done during a period when I was being moderately affected by the bright, buzzing noise of hyperacusis. Something I considered to be actively blocking my ability to hear correctly, and it gets in the way of listening comprehension for certain. By now it had gotten much worse than it was even six months before, so I was genuinely concerned that it would negatively shape my response to the audio tests.
That isn’t what happened. Despite the huge differences between my perceived hearing during the two times I had the tests given, the results were nearly exactly the same.
My legitimate hearing loss is a physical attrition of the hearing anatomy that shows up in exactly the same frequency range and loudness for each test, it did not change over the course of a year. Nor did the perception of hyperacusis mask the ability of my ear’s physical anatomy to perceive complex sound. At all. This floored me.
Nevertheless, it finally clicked: tinnitus is anti-aliasing of the brain in sonic form.
It is caused by our brain over-adapting to the lack of physical response for a frequency range. It magnificently fills in the spots where it knows something should go, but it does it a little too well and a bit too loudly. What we perceive as tinnitus is the ringing and buzzing ghost response of our missing ear pixels.
What the audiologist said will always stick with me: just because one or a few upper harmonics of a musical instrument are missing, that doesn’t change the overall character and musicality of the instrument. The same is true for missing tones in hearing and overcoming the stigma of tinnitus masking my ability to continue my musicianship.
While tinnitus is a malady of physical ear anatomy, hyperacusis is not. Where one is a clear agent of adaptation to physical damage, the other manifests under the same chemical imbalances that signify what many commonly call a migraine headache. I have never in my life suffered migraines.
When I learned of this new word and how it differed from tinnitus, I struggled to understand. Multiple people tried to explain it. I saw the Nurse Practitioner to help me with symptom relief through a set of medications, commonly applied for patients like me. After the first ramp-up of an anti-depressant drug called Nortriptyline showed no improvements, a second was added called Topiramate, aka Topamax.
Similar to the Nortriptyline, its primary use is not to treat tinnitus, but to arrest the progression of seisures through some fancy brain alchemy. Apparently nobody fully understands how it works. Nevertheless, it is prophylactic, not a reactive measure. It is very common to prescribe to migraine sufferers as a preventative medication. From what I have read, it isn’t something that will get rid of migraines. If you end up with the migraine, the Topamax has failed, it cannot then be used to get rid of the migraine.
Dropped In & Out#
There is an aspect of these drugs that has to do with psychology. Both of them have the classic “suicidal thoughts, call your doctor” warnings. I had my own run-in with major depression separately 20 years ago, so I was highly suspicious of these causing some kind of relapse condition, but reluctantly agreed. I asked many questions about the potential for cognitive displacement and the most I got was to take it at night because it would make me “drowsy”.
Being on Topamax, for me, was like getting stuck coming up on LSD. I experienced my face getting numb and strong mental disassociation. Periods of time would elapse that I would not realize had elapsed, as if I had suddenly woken up from sleep, even though I was in the middle of some other activity. I began to have extreme paranoia. Decisions I made every day became monstrously difficult and would stall me in my tracks, I was living in the zone of indifference and could not escape.
This began to affect my day job, my relationships, my ability to lead a normal - if hearing impaired - life. It helped destroy my confidence and made the things I love to do unbearably tedious and mentally painful.
I dipped in and out of depression states all the time, and the very few expanses of time I seemed to be rid of the hyperacusis, it was merely lying in wait just around the next corner. My days were filled with fear.
If I happened to wake one beautiful morning without distortion in my hearing, I could count on it returning. When I explained to my doctors that the loud droning of the AC kicked the hyperacusis into action, I was told that loud sounds can cause the migraine. So was it now a choice? Comfort or sanity?
There was something else, though, that made it maddening and nearly brought me down hard. It is the reason I’m writing this: I could hear the Topamax.
It is no coincidence that when I started into this phase of the treatment, I noticed tinnitus on the list of side effects. So it’s important to explain the sonic differences between what I am perceiving as sound in my brain and what everyone else is hearing as sound in the open.
In normal hearing, a vibration is at fault. From all around us, sound combines into a complex phenomenon that is transmitted as vibrations throughout our hearing apparatus. Mammals especially have evolved precise tools for picking up these sounds and translating them into impulses that the brain constructs into a rich, multi-dimensional array of acoustic dimension.
Unlike the eyes, our ears are serial. To the retina’s thousands of receptors that pick up light, our ears have one input a’piece. In fidelity it out performs any expensive microphone or audio input, but like those examples we can only process one vibration at a time.
Inside the ear, tiny hairs vibrating in kind resemble the acoustic arrangement of sound as it is happening. When that complex vibration hits areas that are damaged, that missing piece is what the brain wants to make up with tinnitus. It’s playing the sound itself as a kind of interpretation of what is supposed to go there, adapting to damage.
Now, imagine the shape of a migraine. Maybe you’ve heard about occular migraines, where people have such sensitivity to light that they have to be in a completely dark room or it is unbearable? Light becomes so bright that it overdrives the sensory mesh of the eyes, like when you step outside into the bright sunlight after being in a completely dark movie theatre for three hours.
Hyperacusis is the presence of an auditory migraine. Sound becomes so amplified and emphasized that it begins to sound distorted and smashed, like it does when you turn up the volume too loud on a small toy speaker. It sounds exactly like that.
If you were to play clusters and stacks of pure sine waves at high frequencies through that tiny speaker at full blast, you’re getting close to what it sounds like when the hyperacusis is activated with tinnitus as part of the picture. When it’s in full bloom, it sounds like the phasing chorus of insects at night in the western North Carolina mountains.
Let’s keep score here. We now have:
- A. Tinnitus caused by a known adaptation by the brain that is readily measurable by my failing loudness curve in the audiogram results, representing the frequency bands at which the brain will respond by playing the missing vibrations itself,
- B. Hyperacusis that is related to an imbalance in the chemistry of the brain very probably caused by a viral infection of the inner ear, and
- C. Hyperacusis complicated by tinnitus that results in heavily driven and distorted ringing instead of the nominal ringing produced by the brain.
It is crucial to note that C does not happen without A and B together, and B does not necessarily lead to C because delinquent frequencies are not always being matched by the brain’s tinnitus adaptation.
Without C, Hyperacusis can merely mean that things just sound very loud. We need the combination of A and B to reach the psychosis inducing levels of C.
Topamax is portrayed to avoid B so that C is never reached.
Sine-Waves not Noise#
When I began taking this drug, I noticed a change immediately. When they happened, the side effects I listed came along with a sonic artifact that I can only describe as a stretched, white noise that felt weirdly colored, and changed colors as it progressed.
White noise is basically undifferentiated pitches (frequencies) across the audible audio spectrum playing randomly all at once with equal energy. It can be perceived differently depending on filtering, i.e. its color. For instance, brown or pink noise are both results of filtering full-spectrum white noise.
Filter out more and more of the pitches, you get further away from noise and closer to what a stacked cluster of tinnitus pitches are like. Notice that these sounds are not very far apart, sonically speaking, from the Topamax induced noise I was hearing. It all mixes very intimately together.
In a nominal state without Hyperacusis in tow, tinnitus becomes more singularly identifiable and relaxes into smoother waves. This less annoying Sine-wave Tinnitus, as I call it, has the ability to sit as a sort of neutral pitch in our affected heads. If one can learn to consider a certain background level of tinnitus as this neutral background, the ringing “goes away”.
Think of it as a noise floor, or the background color of an illustration. We each have a different color for that floor already, it’s just so low as to be rendered unnoticeable in our awareness. John Cage was probably hearing something like this in the anechoic chamber, being told it was his nervous system in operation.
Tightened and Flooded#
Nerves in operation is exactly how I have come to understand it. The brain juice that gets excited by stress overfills or is off balance for one reason or another. This eats into the available bandwidth set aside for sensory pathways, leading to low tolerance ceilings for the kinds of sensory inputs associated with migraines. The theory is that the healthy watermark for this particular brain juice would normally not get in the way.
If I were the neuroscientist I am not, I might expect such a mechanism is useful in adaptation or damage control, somewhat similar to tinnitus itself. So it makes sense that the two phenomenon are very closely related, in brain juice terms, and directly affect one another.
Hearing the tinnitus become distorted itself as the hyperacusis kicked in is where I notice this the most. But I only knew to recognize this difference because of learning that the two were separate juice flavors.
Once this sunk in, I understood the disguises. Sine-wave tinnitus only gave way to crunchy, phased, filtered-noise, frequency-impulse hyperacusis. They did not exist together. When the extenuated migraine juices have set in, it is only hyperacusis. Sine-wave tinnitus is a breath of fresh air, comparatively.
When the hyperacusis conditions are met, the source of the distortion I hear is the constant tinnitus I already have as well as everything else I am also perceiving as sound. A problem here is that some sounds with appropriately matching resonant frequency ranges activate the tinnitus to ring louder.
I could tell when Topamax was activated or doing its thing, whatever that is, because I was introduced to this contrasting fourth mode we can call:
- D. An emphasized and stretched kernel of white noise preceded by itself as a distinctive chopping gated tremolo.
A tremolo that I poignantly noticed when first going on the Topamax because I recall thinking that hearing the gated tremolo sound must mean that I was hearing some kind of chemical brain reaction activate to help reverse the hyperacusis conditions and avoid the migraine condition… ?
Except that is not how Topamax is supposed to work.
Or maybe it is, and I am hearing the effects of it well in advance of it actually doing its job?
Only, it did not do its job. This gated tremolo would start slowly, like a heartbeat, and increase steadily in speed until it was not distinguishable as separate sonic events. Instead, the chopping would come faster and faster until it resembled an unbearable stretched rubber effect.
Grappling with the similar sounding impulses and phasing waves of noise in my head, it was difficult to tell if it masked other tinnitus or hyperacusis because it sounded so loud to me. Like the hyperacusis itself, once this got started any hope that it ends soon was bleak.
Throughout the spring and early summer I was dealing with this grating thing happening in my sonic perception as I attempted to keep a job and prepare a recorded video talk and basically remain operating like a normal human being. While this added phenomenon always accompanied the other side effects of numb face and disassociation, the doctors told me it was the migraine and not side effects.
I grew to believe this, and the escalating stretched white noise crescendo was something I thought I had developed as part of the migraine hyperacusis.
Long Strange Trip#
After I had the audiogram and consulted with another doctor at UCI, we made the decision to take me off this set of medications. It was affecting me way too negatively in too many parts of my cognitive life for me to continue without something drastic like going on disability.
In any case, I had started to doubt very much that the increasing gated noise rhythms which sounded so robotically percussive were part of my own head. As I ramped down the dosage, these plasticky white noise/rhythms began to subside as well. As I write this, it is a full week after stopping Topamax and I have not experienced the chopping sounds again, even under the same extreme hyperacusis conditions that made it shout at me the worst.
Coming around to understanding sensory stuff that goes on in the brain is itself a long strange trip. Hard enough without the added layer of a chronic debilitating condition like this. In addition to the audiologist revelations, it was a George Lakoff talk on metaphor (thanks @ReinH) that helped me unwravel and dislodge the cerebral hyperacusis and physical tinnitus from each other.
Rethinking my understanding of the two removed a lot of the fear I was experiencing around my hearing suddenly collapsing. With knowing I am not witnessing my earbones slowly dying or something, it has made me approach music making again with much less trepidation and sorrow.
So although the medication addressed the problem in nearly no way at all, it did give me different perspectives and helped me recognize the edges. Whatever collision of event, stressor, viral infection, and cognitive pressure combined to stir my brain juice sour… hin und zurück, I live to tell the tale.