The Miss Modular Test – A SSNHL Success Story

***UPDATE 6/19/22: Since posting my SSNHL account on this page, many people from all over the world have reached out to me to tell me their sudden deafness. Everyone’s story is so different, but everyone’s will to see themselves through to the other side is similar. Because I’ve received so many replies to this story, I decided to edit it for typos/grammar/syntax since its publishing in 2019, and I’ve added some more information about the state of my condition now. —Matt***

Starting Thursday, April 6 of 2017, I slowly began to lose all of the hearing in my left ear over a period of 48 hours. This was caused by an inner ear malfunction called sudden sensorineural hearing loss (also known as SSNHL, SNHL, or sudden deafness).

At first, I thought my left ear’s hearing was becoming muffled from a minor cold, but it continued to rapidly diminish in a way that didn’t seem related to sinus congestion. I was having trouble hearing people talk, I couldn’t really enjoy playing or listening to music, and was hypersensitive to pretty much any sound at all that entered my functioning ear.

On the morning of Saturday, April 8, I woke up to my left ear 99.9% deaf. I sleep on my side, and my head was on a pillow with my right ear buried into the feathers. I had been sleeping with a white noise maker, and my first thought upon waking was, “Weird, it must have shut off in the night…” I lifted my head off of the pillow and the white noise roared into my right ear. I was so confused. I started touching my left ear and realized I couldn’t hear my hand touching the side of my face. I put my watch up to my left ear and couldn’t hear it tick.

I jumped out of bed and jammed an iPhone earbud in my left ear. The track I had been listening to last on Spotify was Miss Modular by Stereolab, and as I raised the volume up to 100%, the only sensation I could perceive was the pulsing of a beat through the bud coupled with a bizarre, distant pixelated shadow of a sound when the song’s sharp, descending synth lines interject within the horn section.

Then the next thing I noticed was an intense fullness and pressure filling my ear, as if a cotton ball was pushing its way out of my ear canal. And then, the dreaded tinnitus started—a whole new spectrum of frequencies, pulses, and patterns I had never known could be tinnitus. Industrial throbbing and pounding, glass twinkling, hums, tones, drones, oscillations, almost like a mix of a steam locomotive battling with the intro of Pink Floyd’s Shine On You Crazy Diamond.

My girlfriend (now wife) and I rushed to an urgent care facility. The doctor told me my ear looked very healthy and that it was likely a sinus issue. “Take decongestants and follow up with an ENT.” I definitely wasn’t happy with that answer because I knew something was deeply wrong. I took Sudafed and tried to go about my day, but I was so disoriented (and now drugged up from the Sudafed) that I knew I needed to do something else. I texted my sister-in-law, who is a nurse practitioner, for more advice. She urged me to get a second opinion and find someone to prescribe me prednisone ASAP. First thing the next morning, that’s exactly what I did. I went to another urgent care provider, and that doctor thankfully took my case much more seriously. She tested my ears and reflexes, and was very concerned. She officially diagnosed me with SSNHL, put me on a high-dose regimen of oral prednisone and recommended I get to an ENT right away.

The quickest appointment I could book was 3 days later at Northwestern Audiology/Otolaryngology in Chicago, IL. I started doing SSNHL research on the internet, and became absolutely terrified—while about half of SSNHL sufferers do regain some or all of their hearing , the other half could potentially remain permanently deaf in the effected ear. I was reading horror stories in forums about people who had tried prednisone to no avail and how the quality of their lives had been forever diminished. Some were plagued with vertigo (something I didn’t experience thankfully), and some had decided to get cochlear implants after realizing treatment couldn’t remedy their loss of hearing.

There were no improvements over the next 3 days before my appointment. I continued to be 99.9% deaf in my left ear with strange pressure and tinnitus. Like the first morning of my SSNHL, I conducted what I would call from then on out “The Miss Modular Test,” jamming the iPhone earbud in my left ear and cranking the Stereolab song at max volume as a standard to document any potential improvements. I could feel pulsing, but almost no sound aside from that shrill synth lead so faint, pixelated, and distant—imagine the old Nokia cellphone ringer mixed with a dial-up modem through a coffee can with a lid on it.

So many emotions were pouring through me. For as long as I could remember, my life has revolved around music. Songwriting, recording music, playing drums, guitar, bass, keys, singing, record collecting, going to live performances... At times when nothing else could bring me joy, music has always been there. It’s defined my very identity and existence. I now felt totally lost in a sea of confusion, anger, fear, anxiety, and emptiness. Life outside of music was equally as petrifying. My right ear was being overworked, and sound had no directional quality to it. Car horns, elevator dings, and voices calling my name just forcefully intruded into my right ear. The left side of my face was so tense and exhausted from the relentless tinnitus, pressure in my ear, and my brain trying to make sense of all of this. Thumping headaches in my temples, spasming cheeks, eye twitches…

My SSNHL also coincided with the second week of starting a challenging, brand new job that I had just landed. Talk about a nightmare. I had to tell everyone on my team that “I suddenly went deaf in my left ear.” I couldn’t handle the ambient noise in the office, in meeting rooms, or on my bus commute. I was constantly interrupting people—including my new managers—oblivious to the fact that they were talking when on my left side. I had to ask everyone to repeat themselves. Every time I talked on the phone, I would switch from my right ear to my left ear out of habit only to hear silence. Luckily, all of my new coworkers and managers were very understanding and supportive, but it didn’t make me feel any better about my situation.

Finally, my audiology and ENT appointments arrived. I received a full hearing test and evaluation. My right ear was working fine (thank god). Then it was time for the left ear. When the tones started, I could actually faintly “hear” some of them. I started sobbing. To feel my left ear reacting to any sound at all felt so comforting, like the echo of an old friend’s voice saying “Hello”. The ENT reviewed my results and told me “You have very significant hearing loss in your left ear and a 50% chance to regain at least some of it back. I’m sorry.” She ordered me to get blood work done and an MRI on my brain, but she said those results would likely not yield any answers as to why this happened (they didn’t). The only thing she could recommend was to continue my high-dose regimen of prednisone, keep my fingers crossed, and wait patiently. She said that she could give me a prednisone shot in my ear if I showed no signs of progress within 3 weeks while on oral prednisone. All of this news floored me.

Almost a week after the onset of my SSNHL, nothing was really improving. I was beginning to accept the fact that I would likely live the rest of my life with no hearing in my left ear. My friends and family were so supportive, but very confused. Just like I had never heard of SSNHL before, they too were in the dark on the condition and would try to relate with me, recounting times they had colds or ear infections. It was comforting that they were empathizing with me, and their love was overwhelmingly warm and encouraging, but it was frustrating that they couldn’t quite wrap their heads around the seriousness of the situation—and I couldn’t blame them. Not even my doctor knew why this was happening.

I continued “The Miss Modular Test” and sometimes I’d think there was a slight improvement, but would realize that I was just imagining it. I had read in some medical journals that acupuncture could possible help. I had been going to the same acupuncturist for years, so I reached out to him and asked him what he thought. He said he hadn’t treated this specific issue before, but was willing to try.. He did some TCM research on ear issues and deafness, and asked me to come in a two consecutive days in a row for treatment. Each time I went, I could feel my left ear significantly warming up. It would turn beat red when he would insert needles around it. The acupuncturist was astonished at how red and hot my ear became. I’m not one for any sort of pseudoscience and am skeptical of a lot of New Age remedies, and neither is my acupuncturist, but I could feel some sort of invisible pyramid of energy hovering above my ear harnessed by the needles. I heard very fleeting crackles in my left ear, and the whole experience was one of the strangest I’ve ever felt. Deep down, I knew my inner ear was trying to reconnect with my brain and that this treatment coupled with my steroid therapy might actually be stirring something.

Another tactic I decided to try was using earplugs to see if it could help any of my symptoms. My right ear was exhausted and just needed a break. I figured it was worth a shot to plug my right ear up just to give it a rest. But it was also around this time that I realized any ambient or acute noise trying to make a signal in my brain through my left ear seemed to be contributing to the perpetual tinnitus I was experiencing, and that this was one of the reasons why I was so disoriented, exhausted, and overwhelmed. I inserted the earplug in my deaf ear instead of my hearing ear, and suddenly I felt balanced. I could hear what people where saying better through my right ear. My face started to relax. Sound suddenly wasn’t so jarring. My left-ear tinnitus was subdued into a much more manageable collection of sensations. The pressure was still there, but not nearly as bad.

And, that’s when my hearing started to come back… within those first 24 hours of wearing the earplug in my deaf ear, my ear started to somewhat fire with crackles of sound similar to broken speaker wire (I called them flickers). It first happened when my dad was telling me a joke and exaggerated his voice to a very high pitch. My left ear loudly crackled to the peak of his voice and made me cry tears of joy. The next morning, I turned the bathtub faucet on and could gather a strange, pixelated, crystalline pitter-patter in my left ear when the water hit the tub. And then at breakfast, when taking out plates and silverware, I could hear sharp, metallic clangs. Of course, I conducted “The Miss Modular Test” immediately after this, and I could actually make out a shadow of the song. I wasn’t hearing normally by any means, but I could feel my ear awakening, and I was in total disbelief that it was actually happening.

The following week, my hearing was VERY pixelated and distorted. Remember the “old Nokia ringer mixed with a dial-up modem through a coffee can” analogy? Now the lid came off of the coffee can and everything was relatively audible. I began to hear my watch tick again when I held it up to my ear. I remember hearing a robotic-sounding bird song, and looked up over my left shoulder to see a robin on a branch. At one point, my left ear was hearing sound pitched up an entire half step relative to my right ear as it was returning back to a more normal state (this is called diplacusis). Listening to stereo headphones was not possible during this time because of how disturbing the difference in key was to my brain. And after about 3 months, many more visits to the audiologist and ENT, and lots of gratitude, my hearing returned almost back to normal except for a few little dips on some higher frequencies which actually could have already been there before I lost my hearing due to years of me being a musician.

I believe my recovery was was due to a combination of many things, not one silver bullet magic cure—adhering to my oral prednisone regimen for 7 days immediately following my SSNHL diagnosis (beginning 3 days after the onset of my hearing loss), going to acupuncture, having the most incredibly loving support group anyone could ever ask for, and using an earplug in my deaf ear that relaxed my brain. I also continued to take a tapered dose of prednisone for 5 weeks after I regained my hearing, and if you’ve ever been on steroids for a long time, you know it is absolutely insane with emotional ups and downs, bursts of energy, sleepless nights, and extreme exhaustion.

To this day (updated 6/19/22), I still have bouts of unexplained left-ear tinnitus, the occasional feeling of fullness (cotton ball sensation explained above), and sometimes my hearing in my left ear does seem muffled. Something else strange happened. My right ear is now extremely sensitive and it crackles when exposed to loud noises noises, especially those that are higher in frequency. It can be hard to talk in a loud restaurant or on the phone without it crackling, and I almost always need to wear ear protection when playing music or singing even at safe volumes. My ENTs don’t know why this is happening and can’t really do anything about it. I am scheduled to see two tinnitus experts this year to see if they can help me.

Who knows why any of this happened. Regardless, I’m infinitely grateful that I can hear in my left ear at all. I think early treatment was the key to my recovery, and I can’t encourage you enough to go to your doctor any time you have something feeling “off” with your ear AS SOON AS POSSIBLE. Your doctor will likely say it’s simply a sinus thing, possibly an ear infection, or some fluke earwax issue, and it probably is. BUT, there is a chance it’s something more serious like SSNHL, and it could save your hearing if you are able to quickly begin treatment.

I wrote this piece because when I searched the internet during my bout of SSNHL, there was almost no positive literature on the condition. I only read a few vague success stories that didn’t necessarily make me feel better about my circumstance. I want people to know that there is hope if they do experience sudden deafness, and that rapid medical attention is imperative to increase your chances of recovery. If you still suffer from SSNHL, my heart is with you, and I admire your courageousness and determination to continue leading fulfilling lives despite deafness (I have read many of your stories). My account may seem like salt in the wound to those who didn’t recover, but I didn’t write it to make anyone feel bad or like they didn’t treat their case appropriately (as you probably know, recovery really is a crapshoot even rapid treatment). I want people to know that not all hope is always lost if you are diagnosed, and that if you are aware of the condition before it happens and what an emergency it truly is, you might be able to do something about it that could assist your recovery.

I want to caveat this writeup with three very important notes—1. I am NOT a doctor or medical professional. 2. I have not read any medical literature about wearing earplugs during SSNHL so I wouldn’t qualify it as a valid treatment method (it was purely anecdotal to my circumstance), and 3. You must seek professional medical assistance ASAP the moment you notice any sort of sudden hearing loss—DO NOT TRY TO TREAT IT YOURSELF WITH INTERNET REMEDIES.

Please respect your hearing. Please respect those who live with special needs. Please be positive, and always try to be grateful for the life in front of you no matter how hard things may get. It can always get better no matter what’s thrown at you.

Love,
Matt