It's a Story That Began with Tinnitus (Long Post)

Hello,

I'm not exactly a newcomer (I've been hovering around the forums), but this will be my first post. I decided to start writing about my experience with tinnitus during these past few months because this thing has led me on a whirlwind adventure on what would have otherwise been a new chapter in my life. This might as well be an entire chapter from a book, so if you're interested in my little long story, then please if you'd like.

I developed tinnitus around the beginning of June 2017, just shy of my university graduation by a couple of days. I had just been let go by my workplace because not enough work was entering the company but it didn't bother me very much because I had plans on traveling and relaxing after convocation. Since then, I spent most of my time pent up in my room just drawing, reading, and listening to music. Then it started. I remember lying in bed and hearing this little ringing in my right ear. It scared me a bit but went away when I turned off the fan. The next morning, I watched something on Youtube and noticed that part of the music was scratchy when I listened to it with my right ear. I was so afraid and immediately turned it off. And just when I was preparing to leave the house, my ear underwent a threshold shift. I thought it would go away like how the sensation normally does after a few seconds/minutes; but it didn't. My hear felt full for the rest of the day and even worse, every sound had this scratchy/metallic quality of a certain pitch.

I went to see a doctor immediately. He looked at my ears and said they were fine and that I was probably experiencing Eustachian Tube Dysfuction. He reassured me that it should resolve in a couple of days or weeks, but if continues, to come back or go see another doctor. In the next few days, the ringing then became louder but intermittent - settling in moments of silence. And then it started to sing and then head buzzing, and then both ears singing with the right being the louder one. Over the course of 3 weeks I saw six doctors and one audiologist all with different diagnoses for the cause of my tinnitus. And I was pissed.

Doctor one: You're ears are clear. Your symptoms sounds like ETD. It usually resolves itself.
Doctor two(family doctor): I looked at your nose. It seems like it's clogged. I'll prescribe you sinus medication and see how you do after a week.
Doctor three: You have early onset tinnitus. Here's a number to set an appointment with an audiologist.
Doctor four: Auditory hallucinations. I advise you to go to the emergency room. (Yeah... I know. What?)
Doctor five (emergency room): [I made you wait an hour and a half and after looking at you for 2 minutes I say you have] Tinnitus. You just have to live with it. (She pissed me off most)
Audiologist: You have moderate to severe hearing loss in both ears. It's worse on your right. Perhaps its hereditary. Here's your results, give it to your family doctor, and set up and appointment with an ENT [you have to wait 3 months for].
Doctor six (since my family doctor went on vacation, I saw someone else at the clinic): I Googled something just now and let's hope you don't have that. [I didn't look at your ears] So maybe it's just wax. I'll send your file to the ENT.

Dear Lord.

And I didn't even include all the nervous breakdowns and anxiety I felt. Stress level was so high and yes, I also developed Hyperacusis during that time. I shut myself out from the world even more than before and forced myself to withstand silence for the sake of protecting my ears. You can only imagine me during convocation - sleep deprived, sound intolerant, developing a headache from all the screaming graduates around me.

Mother was kind enough to save me from my insanity-inducing solitude at home and let me stay with her in the Yukon for three weeks. So a week after my convocation, I packed my bags and few north for an unexpected vacation. I was so scared of barotrauma but fortunately my ears did not worsen. I bought headphones with noise-cancelling technology and just turned them on during the flight without plugging into anything. My ears popped in creative ways though - sounding like someone was walking on bubble wrap around the perimeter of my ears. At the Yukon, when I wasn't travelling around with mother, I spent most of my time at home - in silence just drawing through the ringing. I was very broken by then but mother's companionship was the best thing I've actually had in years. I calmed down. And just about the one and a half month mark, the Hyperacusis (and occasional pulsatile T in my left ear) went away. I still heard hissing and ringing, but sounds did not hurt anymore.

The trip up north was unexpected, but for months prior mother and I had actually been planning to go to the Philippines as a graduation gift. So when my stay with her ended, I flew back home for about a week and then packed my bags again to go to the Philippines. I was actually more scared of the plane trip this time because I would be flying on 3 different planes and spending about 18 hours in the sky. Again, noise-cancelling headphones and grit. My ears did the bubble wrap popping thing again but the T didn't spike.

Now let me tell you something about the Philippines. Silence is laughably tenuous. There will always be background noise and people always wanting to talk. Traffic, gossip, bustle, and roosters crowing at the godforsaken hours of 5 in the morning - you will never feel alone. Now let me tell you something about my family. They don't shut up. It was very easy to forget about my T. I knew it was there. It was always there but I had good people around me and there was always something to do. T really did become part of the background and I felt like myself again - confident, youthful, and sane.

I not only felt cared for, but I also felt reassured. My aunt and uncle are practicing nurses who teach at one of the city's major universities so if I had any health concerns, I can just knock on their door. My aunt doesn't specialize in the ears or hearing though, but she supposed that my tinnitus might have been triggered by what she calls post-stress. It happens when our bodies delay symptoms until whatever's causing the stress goes away. You probably know someone who's had it, or maybe you've experienced it yourself; you'd feel fine when you're busy, but only get tired or sick when your body begins to relax. My aunt says it's possible that I started experiencing the symptoms when I was no longer preoccupied with school and work. My family has connections so they managed to schedule me an appointment with a really good ENT there. (He was my uncle's childhood friend/schoolmate and works under my aunt so I only had to wait for about 5 hours since the initial phone call. Yay!)

My experience with the ENT in the Philippines was the best of all the healthcare practitioners I met. He was considerate, articulate, and most of all, took me seriously. I felt like the doctors up to this point were half-assing and sending me to different places for some reason but he actually assessed me. He looked at my ears, throat AND nose. Only my family doctor had looked at nose until then and even she said that there was blockage. The others somehow forgot that the ears, nose, and throat are all connected, just gave me a sad face and sent me off. What the hell! Even if the assessment wasn't nice, I think doctors have the responsibility to make sure the patient leaves the office with less anxiety than when they first entered. I read somewhere that a doctor's words could be medicine or poison, because the body experiences what the mind believes. How is someone ever going to get better or even feel better if all they've been given was furrowed eyebrows and 2 minutes of an explanation they already know. And that infuriated me. According to the ENT in the Philippines, I have sinusitis from allergies caused by air pollutants. He said that I was most likely born with the allergy, but only reached the tipping point recently where the symptoms started appearing. He spent a good amount of time explaining what it meant and I was then prescribed medication and nasal sprays. I was still a bit apprehensive of the assessment, but if anything, I felt more relieved.

It wasn't until much later that I found out my cousin has something similar, if now worse. She's had nasal issues since she was a kid and gets occasional T that acts up when she's alone. She takes strong medication for hers, which led to her gaining a lot of weight, but it was either that or not being able to breathe at night. She's a brilliant woman who's been working directly under the mayor since she graduated university; so no, health issues and T did not and will not stop her.

A week after the appointment, I flew back home and continued to take my medication. I was feeling better and I was certainly breathing better. I think I should mention that a few days prior to the initial onset of my T, my nose was so clogged up that I was hardly able to breathe at night. My mom also has this uncanny, super sensitive olfactory sense and every so often during my stay with her, she would comment how my nose smelled awful and it sounded like it was full of mucus and dirt. I just laughed because I was just so used to my nose getting clogged, but God I was actually able to breathe again with the medication and nasal sprays.

Remember how I scheduled an appointment 3 months ago with the local ENT? Yeah, I was finally able to see him a few days after I returned home from my trip. I went through the hearing test again and it came out the same. Moderate-severe hearing loss on both ears, worse on the right ear. He looked at my ears and said they were fine and only looked at my nose after I told him about my experience in the Philippines. (Ugh. Even the ENT doesn't look at the nose? Really?) He said they were fine too. He concluded that, after hearing me talk about my family and looking at my test results, I probably have hereditary hearing loss. He said the kind of graph my hearing showed is usually found in people much older than me. He said it'll probably get worse as I grow older and I'm going to need hearing aids. Gave me a sheet of paper explaining what T is and just sent me home. I cried.

I always cried. After every doctor. After speaking with my mother. When I was alone with my thoughts and guilt and regrets that maybe if I treated myself better I wouldn't be in this position. Was it the music I played a bit louder on my headphones? On my computer? The fan I kept on max in my room for 3 days I didn't leave? Was it the stress, the bad diet, the sleep deprivation? Is it allergies? Is it hereditary? Is it chance?

I was playing a video game I kept on silent for most of the time. When I turned up the volume I heard what I had been afraid of. Sounds only reaching my left ear. The loud ping when I click for the next dialogue box is almost nonexistent in my right ear. I put my hand over my left ear and strained to hear the ping with my right. The ping was supposed to be louder than my T, but I really couldn't hear it. I closed the game and broke down.

And now I'm here. It's not a great story. It's absurd and depressing. I tried seeking for help over and over, especially early on, I opened up to my family, I educated myself, I traveled, so no one can say that I haven't done enough. The narrative is frustrating and confusing and I broke so many times but it's also the not the end. The new chapter in my life threw me into the open road and I begin feeling like I've been robbed. I'm not going to lie. I'm sad and upset. But I believe in the body's ability to heal. Somehow. Adapting with neuroplasticity, recovering emotionally, getting things just sorted out. I'll get better. Somehow. Right now, I'm not good. But I will be good. The orchestra in my head will be less obnoxious so until then, please bear with me.

Thank your for reading this far into my story

I'll continue to update if any new developments happen.

 

Welcome to the forum @Selene !
I am sorry that you are having these issues with your hearing at such a young age. You seem to possess a great deal of maturity and strength though, and you also have a supportive family to help prop you up. I hope you will start feeling better soon.
I think you are an excellent writer and I look forward to reading your updates!

 

I am sorry to hear you experiencing this. All of us here have same or similar problems so we can all relate. Is the tinnitus really loud? If your hearing loss is bad, would hearing aides help with the hearing along with the tinnitus? Kind of strange they didn't mention that since you said you have moderate to severe loss.

 

Thanks for replying! I know the post was rather lengthy.
Surprisingly, my tinnitus is actually quite easy to mask and is less fear-inducing than it was originally. It sings, chirps, and hisses, but like woodland creatures in the distance. It's not proportionate to my hearing loss and I was able to make out most words during the first hearing exam and every word during the second one. It's the tones that get me. They recommended hearing aids when I get older.

I didn't mention this, but the first audiologist said my hearing loss is actually quite uncommon, since I can hear low and high frequencies perfectly, but the dip happens around the mid-high area. That might be why I'm still able to make out words clearly, because the consonants are still sharp.