By Matthew Bores and J. D. Rider

Hi, my name is Matthew. To start my story I should say that I was always laid back. Almost too relaxed, according to some friends. In December of 2021, that trait would change dramatically when I got tinnitus. Yes, we’ve heard of tinnitus—that ring inside the ears. But this was something else. Something that got really loud when I exposed to sounds, and worsened from things typical, not loud, egregious sounds. Like voices, driving, everything. Music from a speaker. A dog who barked excitedly. It was so surreal. Something that would dominate my life in every way, costing me my great career and keeping me at home, and making me look candidly at this extreme reality with questions that would baffle me, like How can such a vile thing be real to begin with? And how can those professionals that we entrust with great respect direct us down the wrong path—the doctors and the experts?

In 2021, it started off in autumn’s spell. As trees shed leaves that hit the ground, my life would soon be shedding, too, little did I know. I was helping my mom decorate for an upcoming party, and then felt the intrusion: I was bitten by a tick. So for good measure, I took a course of doxycycline, and didn’t think much of it. The next few days went by and I started getting a weird tingly feeling on the side of my face. It wasn’t going away, so I began to worry, pulling up the internet to stew and speculate, which led me down a scary road which caused this stuff to happen. Could this be Lyme disease? Maybe, I concluded.

So I waited 3 days, hoping it would clear. But of course it didn’t. That would be too easy, right? Therefore I went to urgent care to try to get some answers. The doctor was very nice and logical, telling me there was hardly any chance of Lyme, that it was probably just a stress-related thing, as I told him I had had an unusual amount of stress in the past few weeks.

Yet then I messed-up big time, asking to get blood work done just to make sure it wasn’t Lyme. “Sure,” the doctor said, writing me a script to take across the street where the ER section would do the blood work.

Next thing I knew, I had an IV in my arm. The nurses explained that this was standard procedure for anyone that comes in. Oh, good, I thought, not realizing that good was the furthest thing from the truth here. They examined me and asked me what my symptoms were. They took pictures of the tick bite, drew blood for the test and all. Then I sat in the room to wait. The long and stressful wait.

After a bit, a nurse came back and gave the news. After consulting with the doctor he confirmed my worst fears: I had Lyme disease. I asked, “Well couldn’t it be stress? The urgent care doctor seemed to think so.” “No,” she said. “That’s very unlikely and urgent care isn’t as familiar with Lyme.”

They prescribed me 2 weeks of doxycycline and wanted to refer me to a Lyme specialist. I was in shock and disbelief regarding the diagnosis. I took the script and left. I filled it and started taking it just to be safe, but continued trying to talk myself out of believing them. However the tingly feeling in my face refused to go away.

Well a week later the tables turned: now the test was negative. No Lyme disease. Hooray! I felt relief thinking the tingly feelings were stress and would fade away eventually. But they didn’t. Days went by and still, they didn’t. I researched the net again, finding that Lyme tests are only fifty percent accurate, more or less. So Who should I believe? I thought, and therefore I kept taking the doxycycline twice a day.

That evening I started noticing numb and tingly feelings running down my legs. Panic started to set in. I made a telehealth appointment the next day with my regular nurse practitioner. She advised me to finish the course of doxy in spite of the symptoms, saying, “It’s probably not from that.” She also ordered blood work. I went in for that really feeling “off.” Like something bad would happen.

I got home and my leg symptoms were worsening. When I went to the bathroom I felt a strange lack of sensation when urinating. Something was very wrong, I thought. And my pulse started racing.

I went back to the ER. They did a CT scan with contrast and everything looked good. They wanted me to go to another hospital for more tests. After arriving there, a neurologist came in like a marathon runner and gave me a rushed exam. “I’m ordering blood tests, an MRI, and a lumbar puncture.” ZIP!, he tried to scurry off, but I managed to ask him what the risks of a lumbar puncture were before he darted out. “Hardly any, just a slight risk of a headache.” The thought of a needle near my spine was too much for me to bear. So I made a plan with myself that I would get the MRI and—as long as that came back clean—I would refuse the lumbar puncture.

I got the MRI then, assuming it would be normal. My symptoms were beginning to fade and I was getting a feeling that things might be okay. However, an hour later I got the MRI results, showing that I had some white matter spots scattered about, which may or may not be problematic and would need further observing. I looked up what they could mean and all the bad things came up: Lyme, MS, etc. Of course I started to panic again and asked for a doctor to interpret the MRI. Though there were none available. It was then time for my lumbar puncture. I wanted to refuse it, but my symptoms were back and I saw the questionable MRI results. I didn’t know what to do. It was like a trap.

I then read the consent form, but It just stated that I “understand all the risks explained by the doctor,” which I didn’t. Once again, I asked the anesthesiologist, “What are all the risks here? Could I become paralyzed? Could I lose too much CSF fluid?” He replied, “. . . zero chance of getting paralyzed because the needle will be 6 Inches below the spinal cord nerves . . . zero chance of losing fluid. The body will replenish the small amount in minutes.” ZERO, such a strong word, filled with profound confidence. Both of his statements were wrong, though, told by a doctor taking advantage of my lack of medical knowledge, just so I would sign the form and he could get on with it.

He told me again that it was very safe, the only risk being a slight headache, or possible infection, but they were doing it in a sterile environment. I felt I had no other option, so I consented to it and said a prayer to God to keep me safe. They did the puncture then.

The next day, my test results had come in, and they found nothing wrong with me. So they discharged me. I felt the biggest feeling of relief as my symptoms faded away completely within the next hour. I had a renewed outlook on life and wasn’t going to waste a precious moment. I felt so happy and so alive. One day later at work I was having an amazing day, then toward the evening I felt a sudden muffled sound in my ears and a heavy headache setting in. I told myself not to worry as they did say there was a slight chance of getting a headache.

The next day It was magically gone. I experienced lesser versions of this headache, along with vision floaters the next few days. After a follow-up Telehealth appointment, my nurse practitioner reassured me the symptoms would likely fade. They did fade in the next several days, and again I had a renewed outlook on life. This lasted for a little over a week. I decorated my new apartment, got ready for the TSO tribute Christmas concert that I would soon perform in, building lesson plans for my guitar students, booking shows for my band. Things were looking great.

However, soon after I woke up with a sudden pinched nerve in my neck, causing numbness down my arm and thumb. I didn’t panic because I learned the consequences of that. The stress had pummeled me. So I stretched a lot and tried to ignore it. A day or so later I had just gotten home from thrift shopping. I put together a shelf and after it was all together I sat on my couch looking at the way my living room was really coming together when I heard a sudden EEEEEEE in my ears. What the heck is this now? It didn’t pass after thirty seconds and sounded like when I would forget earplugs after a loud rehearsal. But I hadn’t gotten home from a rehearsal. In fact, I hadn’t had a gig in over thirty days. So there was no explanation I could think of for this sudden ringing.

It proceeded to cut in and out for a couple days, causing a bit of worry. It wasn’t until the third day, when I went out to eat with a friend and shot some games of pool, that this demon would sound alarms off. I got home afterward and lay on the carpet of my living room, just hearing a wall of loud ringing taking over my head. It was in that moment when I felt like I was totally screwed and it wasn’t a passing thing.

The next day I immediately contacted the doctor I had seen, assuming he would be alarmed with this sudden complication. Instead, he denied responsibility, saying it was a coincidence and that tinnitus isn’t a complication from a lumbar puncture (even though I learned later that it is one of the most common complications, happening to thousands; lumbar punctures, epidurals, spinal anesthesia, they’re all high-risk, and yet, there’s no mention of that in the hospital pamphlet or from doctor’s.). He then contradicted himself and said I needed to speak with the doctor who had performed the puncture, not him.

So I called that doctor, getting another alarmingly unprofessional response from him, denying ever telling me there was no chance of losing CSF. And then telling me that tinnitus was not connected, but later telling me he has seen patients get tinnitus from lumbar punctures. The twists and turns and crazy lies. If they had been Pinocchio, their noses would be giant now, probably reaching Saturn.

I went on to see a couple different specialists. I tried a steroid, sound therapy, massages, neck adjustments, a dental splint. The tinnitus was very somatic and reactive. By somatic, I mean it would get louder or worse by movements. Things like opening and closing my mouth, or rubbing my forehead. By reactive, I mean changing in response to sounds, getting worse and spiking. All these treatments I was trying slightly took the edge off, It seemed. But did they help a lot? Not at all, to be frank. I could’ve been improving naturally with time, too. Only God knows.

The next thing to try was hypnotherapy. I called to have a consultation and during the phone call I gave a rundown of what I was dealing with. The counselor paused and then told me he didn’t think I needed therapy, that I have a medical issue that needed addressed first, and he knew because he went through the exact same thing. He went on to tell me his story of getting tinnitus from a CSF leak caused by a lumbar puncture at the same hospital where mine had been done. What are the odds? I thought, as he went on to tell me he had a strong feeling that we were meant to connect so he could help me.

He then referred me to a neuroradiologist in Cincinnati. The following day I scheduled an appointment. At my appointment he recommended that I get a blood patch to fix any possible CFS leak. I scheduled to have the procedure done. I got multiple opinions from my ENT, other doctors, and neurologists, all telling me it’s very safe and low-risk. I researched on the net again, finding cases of tinnitus going away after a blood patch, but also cases of it making the demon worse.

Upon getting to my appointment I had a bad feeling and told the doc I wanted to cancel. He asked me my concerns. I explained I didn’t want to make things worse. He said it was a low-volume blood patch and there wasn’t any risk of worsening the tinnitus. (One would think I wouldn’t trust a doctor after what had previously happened, and yet I thought, What are the odds that something like that would happen again?)

Though I wanted to be my normal tinnitus-free self again, and felt this was the only way. I missed who I had been. The man who always smiled. The love I had for life. The beauty and the world.

So I went through with the patch, only to have my ringing spike to levels so unbearable, so loud and dark and menacing as days became infinity, making my problems worse than ever.

Fast-forward to the next year, things had calmed down where some nights I’m able to get decent sleep and the tinnitus isn’t always intrusive. However, my sound tolerance has gotten much worse. Simple things like a fork against a plate can spike the ringing quite a bit. So I’m currently staying home most of the time and working virtually. My career as a musician stopped, which is devastating.

Music is life. Songs and sounds in general are who I have become. I’m an auditory person. I was born with nystagmus, an incurable eye disease, and was diagnosed with a learning disability as a kid, where I learned through auditory means instead of visually.

So sounds and hearing things are my essence. Music and sounds are like the desserts of life to me. Listening to trains go by. Rainfall, storms. Animals in nature. Voices, singing, music. They’re all nutrients filling my body, and my auditory nerves are the taste buds absorbing all the amazing nutrients.

Now suddenly my auditory nerves are no longer taste buds absorbing those beautiful nutrients. They’re like nasty, old, rusted wind chimes, and now all the amazing sounds are wind, blowing against the awful wind chimes, making them create the worst noises.

But I’m just trying to be safe and address the somatic components of the tinnitus with neck exercises and keeping an eye out for future treatments. I’m hopeful that at some point I’ll get better and be able to continue my career in music and teaching with full force. And that my whole life’s work isn’t lost. I want to share this story to spread awareness about tinnitus and hearing damage. There is a misconception that tinnitus is only caused by loud noise exposures. I had always thought this to be true, as well, but there are so many other major causes of tinnitus and hearing damage, a CSF leak being one of them.

Another takeaway is this: I want people to get from my story the importance of your rights as a patient, and advocating for yourself. Some doctors will try to rush or intimidate you, but you have the right to ask to video record all doctor visits, ask as many questions as you feel the need to, and ask for their answers to be verified, to stop anything at any given time if you’re uncomfortable. Don’t ever feel like you’re being an inconvenience or a difficult patient. Be difficult. So be it. Take the extra time. It’s your health, not theirs. If you have your health you have everything. So in contrast if you don’t have your health everything else that was important is now irrelevant.

My heart and sympathy goes out to everyone who is suffering from tinnitus and hyperacusis. Hopefully healing treatments are in the near future. Right now there is nothing. Doctors often advise that sound therapy is helpful. I’ve talked to so many people who’ve worsened from that. I can’t do sound therapy, either, due to my condition. My sensitivity and tinnitus go nuts.

CBT, or cognitive behavioral therapy, is of little value to folks like us, locked away in hiding. I mean, let’s face it, no one wants to live the life of a hermit, blocked off from the world since sound is like an allergy. Where normal stuff will demonstrate that sound is like a bomb . . . something as simple as dropping a cellphone on the floor, smacking the wood and smacking my ears. Smacking with depravity that has no sympathy. Where tinnitus is slavery to sound in every way. We need something, you know? A treatment or a cure.