I suffer from Patulous Eustachian Tube
This post was originally marked private by mistake. So some of this has changed.
I suffer from a Patulous Eustachian tube. It’s an ear disorder where my Eustachian tubes pop open and so when I speak, it sounds as though I am shouting into my own ears (it’s called autophony). I’ve had this problem since 6th or 7th grade, but I never knew what it was called until today. I’ve seen a number of doctors about it, even to the point of surgery, but it was never properly diagnosed.
I used to sing and act.
Yes, that’s past tense. In high school I was in 4 choirs, and I was always in rehearsal for a play at the local theatre. It’s part of why I went to college for film and theatre. I wanted to perform and I wanted to direct performers.
But toward the end of high school, the problems with my ears started to get worse. Projecting my voice became difficult because even speaking at a normal volume is the equivalent of shouting when the tubes are open. So I started seeing doctors and specialists about it. They diagnosed me with having a deviated septum in my nose, the result of having broken it as a toddler and the tissues healed side-by-side instead of along the broken edges. That deviated septum was causing constant blockages in my sinuses. Now, those blockages may have changed the pressure levels in my nose to the point that my Eustachian tubes were popping open, and I will say my sinuses are amazingly clear since. But it didn’t solve the real problem.
So when I got to college, I ended up dropping out of choir. I took fewer acting roles and refused to practice outside of rehearsal. There was a “cap” on how much volume I could muster because as I took a deep breath to ready myself, the tubes would pop open. I started breathing more shallowly, using more muscle and less air for speaking, developing a hoarseness to my voice that made singing difficult. I also have severe stiffness in my neck from holding my head in a position that doesn’t let the tubes pop open.
The only time I can speak at a normal volume is when my head is upside down.
This has bled into every aspect of my life. I don’t sing anymore, I don’t act. I avoid speaking whenever possible. I avoid speaking for extended periods. I have a weird facial tic where I am flexing my muscles oddly in order to keep the tube closed. I have a sharp sniffing habit from trying to force it closed by air pressure, which is very dangerous to the ears themselves, but it’s all I can do.
In the past two months, it has gotten significantly worse. Now, my right tube is always partially or fully open. My left tube pops open fully fairly regularly. I became fully aware of how bad it had gotten during exercise walks with my mom. I would find myself unable to speak after a short time because of this. It also came up due to the physical work I am doing for transition: making a conscious effort to relax my neck and shoulders, voice retraining, posture. All these things make it harder to hold a pose that keeps the tubes shut, and it has made me very conscious of why I have been so stiff all these years. When I relax, the tubes open. Cause and effect.
But now I am looking into solutions. It’s been 15 years, so my situation is very advanced relative to those who find help from home remedies like herbal teas and cutting caffeine. The other home remedies are: cut chocolate, cut sodium, cut exercise, gain weight. Seriously. Those are the home solutions.
My ADHD meds would normally make this situation worse, but it was so bad already that there wasn’t much damage they could have done.
At this point, I am probably looking at surgery. I will be trying to schedule a specialist visit next week to take care of this once and for all.
I cannot express how much relief I feel just by knowing that this problem has a name, and there are possible treatments for it at last. Finally, there is hope.
I want my music back. I want my acting back. I want to be able to speak to people without worrying how long I’ll be able to keep talking. I want to be able to relax again.