First Anniversary: Tinnitus Improvement and Hopeful for More

My tinnitus experience started after a sinus infection that spread to my ear. It’s been one year since it’s started, and the progress, while meaningful, has been so imperceptibly slow that I need to remind myself of how bad it was to appreciate where I am now. But I’m grateful for that, and share this as a reminder.

Initially, I could barely focus over the many layers of hissing and ringing at various tones and rhythms. I also had lost the acoustic reflex in my left ear, making even slightly loud sounds painful (tough with two toddlers). I also felt like my ears were underwater and muffled.

As many others have experienced, I was shocked at how little help medical professionals offered. Two ENTs had little interest in helping after hearing the word “tinnitus,” simply saying that we didn’t know anything about it and I should learn to live with it. In addition to 2 ENTs, I saw an otologist, my GP, an allergist, and had an MRI. No one was really willing to consider what may have caused my condition and what could improve it. It was isolating and upsetting.

And also as many have experienced, I continued to move forward, one day at a time. And very slowly things have gotten better.

I still have a rhythmic hissing in my ears/head. It usually pulses at the same pace as my heartbeat, or with my footsteps. I can modulate it by applying pressure to my ear/head or protruding my jaw. Sometimes it is faint enough that it remains low and constant and I almost have to check if it’s there, other times it is louder and joined by an irregular ringing that comes and goes.

In the absence of any guidance from medical professionals, my working theory is that my sinus infection lead to an ear infection, which caused swelling throughout my nasal cavity and fluid to collect in my ear (both confirmed by MRI). The swelling caused Eustachian tube dysfunction, which prevented the fluid from draining and resulted in “glue ear.” Now the fluid is largely gone and I’m left with dry/sticky/inflamed/irritated nasal passages.

With the improvement of these physiological conditions I have seen an improvement in my tinnitus that roughly correlates. I remain hopeful that as these conditions continue to improve so will my tinnitus, until hopefully everything is back to how it was before. I still hear snapping/popping/cracking noises when I swallow or pop my ears (which I never had before). And my nasal cavities are nowhere near as mucousy as they were my whole life prior.

I haven’t found anything that causes spikes or immediate relief, though good hydration, humidity and rest seem to help. After a period of months without caffeine, alcohol, chocolate, cannabis or other potentially problematic things, I pretty much kept living my life as usual since none of that seemed to have any impact and I was psychologically better off with them. I took a nasal steroid for most of the year in good faith of following doctor’s only suggestion, but stopped about a month ago and haven’t seen any negative effects (well, my allergies are back, and I’m considerably more mucousy most of the time).

I still get discouraged and miss true quiet, and think about it daily, some days more than others. But, I don’t think as fatalistically about it anymore, no longer am in pain when I heard my daughters shriek, and am able to be distracted from it for substantial portions of my day. It doesn’t feel like habituation as much as improvement, but I am getting used to it being there and not letting it upset me.

I’m incredibly grateful for this community and sympathetic for everyone who has suffered with this, many for far longer and worse than I have. I am also encouraged by my resilience and perseverance, and hope the same for everyone too.

Thanks, and may we all hear nothing again one day.

 

So many points in your story resonate with me. I'm also a mom which seems very difficult when dealing with this condition and taking care of a family, much less, yourself.

I've also been to 3 doctors, 2 ENTs and 1 Otologist. None could provide any practical advice that was helpful. One of the 3 gave me a handout with a few suggestions. I was astounded that the doctors had years of specialized training and they had so little to offer me.

My husband said isn't there a place you can go, like the Mayo Clinic? He thought it was something that could easily be fixed. He said can't you patch it up like I do my back and move on?

I am proud of your tenacity and perseverance. It is encouraging that your hyperacusis has gotten better. I think one of the hardest aspects to this other than the tinnitus, is the separation from normal activities with the family. Both my son and my husband are very loud people. I've had to talk to them about the things that are painful for me to hear. Mornings in the kitchen are especially difficult.

Praying for continued improvement and recovery for both of us!

@twa

 

Prayers for continued improvement.