No, this isn’t a post about furry critters that make our lives better.
This is about a medical condition known as Patulous Eustachian Tube, or PET. Never heard of it? Consider yourself lucky.
I had never heard of it either, until 2017.
What is PET?
PET is a physical disorder where the eustachian tube inside your ear that is normally closed, is instead stuck open. When this tube is open, the patient experiences autophony (the hearing of self-generated sounds).
Wait, what? ‘Self-generated sounds’?
Yes, sounds like their own voice, their breathing, their heartbeat are all amplified.
In August of 2017, my left ear “stopped working”. I went to my doctor and was told it was probably due to allergies (of which I’ve never been a sufferer, but I understand these things can change), and was told to try things like Sudafed and nasal sprays.
A couple of months later, I went to a ENT specialist and was prescribed “special” nasal sprays.
A couple of months later, I was prescribed a steroid spray.
After that, a hormone-infused liquid I was to ingest.
After that, I was diagnosed with PET and told there wasn’t really much they could do for me, but I was welcome to try a product called Patulend (which I did) and I could try having a septoplasty surgery to correct my “deviated septum” and that might “do the trick”.
Where I am now
So now it’s been quite a few years, and I have had no relief. I recently did some research on my own and joined some PET groups on Facebook and the consensus is that this diagnosis is a bitch to live with but there aren’t any definitive treatment plans and only a handful of doctors that “specialize” in PET worldwide. Worldwide.
I have symptoms more often than I don’t. Meaning, in a typical day, 80%+ of it is spent in autophony. Everyday? Pretty much.
This disorder has affected my life more than I care to admit most of the time and I try not to complain about it too much but… I’ve changed because of it.
I limit my talking, I don’t sing in the car or in the shower hardly at all anymore, I feel awkward speaking in front of people, even people I know. Sound pretty minor? Maybe so. But this has bled into my personal life (how annoying to be around someone who always asks you to repeat yourself and isn’t always a fully contributing member of a two-person conversation) as well as my professional life.
Sometimes the pressure in my ear is so bad that it hurts, and I’m tired of hurting.
Mostly, I wonder if this is going to be my life forever, if I’m always going to have this underlying frustration and pain and self-consciousness.
I hope you never have a reason to research PET. But, if you do, please know you aren’t going crazy and your ENT may not be able to diagnose you right away because it’s such a rare condition. But also, please know you’re not alone. It won’t fix the PET symptoms, but it makes things seem a little less bleak.
3 Comments
I have an ear problem too…at least that’s what I’m convinced I have. I’ve been to 2 different ENTs and they just keep giving me allergy meds. One told me I “probably” have a eustachian tube dysfunction, but there’s nothing they can really do about that. Uh what? I have daily bouts of vertigo and tinnitus, and my ears feel stuffed full like I can’t get them to pop. It’s been about 4 years now. It’s very frustrating and has given me anxiety like I’ve never experienced in my life. So, anyway, the point is I feel your frustration! I just keep reminding myself that no matter how much it sucks, it could always be worse and lots of people are worse off than I am. And, of course, that which doesn’t kill me makes me stronger…haha. I rarely feel strong when I have vertigo to the point of nausea, but I’m not dying, so there’s that. 😉
Me too,I got pet few months ago,before that I went crZYY ALL year and now i am looking for surgery or something because i am only eighteen year old and already cant focus and do things that I love please help
I was diagnosed with Meniere’s over 15 years ago after months of symptoms (tinnitus, vertigo, intermittent muffled hearing/underwater sensation) that had me on edge, uncomfortable, and frustrated. It took doctor visits, x-rays, MRIs, lots of symptom diary time, and too much time feeling like a guinea pig. Some of the symptoms I’ve been able to manage with diet and keeping my allergies in check (since those mess with my ears anyway) – episodes are unpredictable though. It is hard dealing with something that affects how you interact with your environment that doesn’t have any outward signs to those around you. Keep fighting to maintain the life you want, but remember it’s okay to readjust what “normal” is (and how you take care of yourself within that “normal”).
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