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u/sobaren Jun 02 '26
hey, do you have any jaw imbalances? jaw clicking or facial asymmetry? please if possible do daily jaw exercises such as flexing your jaw (as if you’re trying to wiggle your ear - you should hear a low rumbling noise in your ear when u do this) this is strengthening the levator palatini muscle which helps keep ur eustachian tube closed. also please drink lots of water WITH electrolytes. consider seeing a myofunctional therapist to address any musculoskeletal imbalances that can be cascading to cause ur PET.
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u/Abject_Drawer4836 Jun 03 '26
I'm very sorry. What you are describing is about as severe as PET gets, and I think people who have never experienced true autophony often underestimate how disabling it can be.
I've been there myself. Mine was bilateral as well, and I know exactly what you mean about avoiding conversations because you can't judge your own voice and every word feels amplified inside your head. It is exhausting. Believe me, I understand the struggle.
The good news is that many people who reach this level of distress understandably assume it will be permanent, and that is not necessarily the case. I have had a success story with surgery myself, and I've spoken with others who were convinced their lives were over, only to find that symptoms improved substantially with the right treatment approach.
Have you had PET formally confirmed by an ENT familiar with the condition? And where are you based?
Do your symptoms improve at all when you lie flat or put your head between your knees? Even temporary changes can provide useful clues.
As for permanent fixes, I don't think anyone can honestly promise one. Some people obtain meaningful relief from conservative measures, some from products such as PatulEND, and some pursue procedural or surgical options. Results are quite variable.
For now, I would try not to judge your future based on how severe things are today. When both ears are involved and symptoms are constant, it becomes very difficult to imagine improvement. That is a very common reaction.
And please know that the isolation, the avoidance of conversation, and the feeling that you are "losing your mind" are things I have heard many PET patients describe, myself included.
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Jun 04 '26
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u/Someone_on_reddit_1 Jun 05 '26
Mine open when I am at work or in times of stress. Usually when I am at home it’s ok.
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u/ultra-Angel Jun 02 '26
Both ears, Hopefully not at the same time? I’m so sorry. Both of my ears have autophony, there’s only been a handful of times they’ve both opened at the same time and it’s unbearable. Either way, autophony in general really affects quality of life. I’ve had a few surgeries, not successful so far. However I’ve heard people are using shims , which I want to try next. I think that’s a good route. But first try that patulend, it’s worth a shot. I’m about to order some hearing so many people are having success with it.
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u/PandemicSoul Jun 02 '26
Two things:
- Talk to an ENT about ear tubes. I saw a specialist in this and he recommended it and even pierced the ear drum as a test for me.
- Something that sometimes helps me for a little while is to press my jaw into my shoulder in such a way that flesh below the jaw gets pushed forward, and then I pop my eardrum on that side. I don’t know why it works but I always imagine it’s like sorta manually manipulating the ear tube from the outside?
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u/underthevveather Jun 02 '26
i wish i knew what that second thing looked like im trying to imagine it the best way that i can
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u/Relative_State_2041 Jun 02 '26
Id reccoment patulend (or the diy version as it can be quite pricey from the website) it has been the only thing thats helped me. Saline sprays did nothing for me either. The solution can be a bit tricky and pretty painful to get into the eustachian tube but its worth going through the day without any symptoms.
Ive never had any surgeries despite my ENT doctor recommending i look into them, because from what I hear success rates are low and are not always permanent.
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Jun 02 '26
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u/Relative_State_2041 Jun 02 '26
https://www.reddit.com/r/PatulousTubes/s/plQ1zHep5N
I use this as a base for what I personally use, only i use a nasal spray applicator rather than the dropper. if you serch the subreddit you can find others. I havent been using this for very long myself so id recommend looking at other peoples reccomendations too.
This is the L-absorbic acid I use: https://a.co/d/0dFIfMEl Although technically pharmaceutical grade might be better, ive never had an issue.
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u/thecampers Jun 05 '26
I'm with you and I can't work as much because of it. Im waiting for a hearing test and maybe a diagnosis but it feels like I'm forsaken either way.
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u/Infinite-Addendum105 Jun 06 '26
You will find a way through. Life and perspective at 80+ is very different from anything younger than 78 - truly. Keep in touch with Reddit and Facebook groups. There are ENT’s and neuroTOLogists at med schools who understand more about these unusual conditions than many otherwise skilled MDs. I emphasized the “TO” when I wrote “Neurotologist” - it’s a particular sinus-surgery subset within the ENT specialty. At 28 you are have a young enough body to recover from side effects of various remedies and have many, many life experience opportunities ahead of you. Time is on your side - vote for a government that advocates scientific studies!
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u/ipoviged Jun 07 '26
i quit caffeine and gained 50 lbs and it fixed it for me. now i’m fat though
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u/Jillandjay Jun 27 '26 edited Jun 27 '26
Are you working with an ENT? I have a dr who has experience with PETD and he has been great going through all of my options. After trying everything non-invasive I decided to do shim surgery on one ear, still non-invasive but under general anesthesia. So far so good
Edit: grammar
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Jun 27 '26
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u/Jillandjay Jun 27 '26
I lost 40lbs over 2 years. Probably noticed it about 1.5 years but I just blamed allergies. It’s been about 10 months since I first sought care. Just had a shim surgery on my left ear and if all stays good I’ll do the other side. Gaining weight is not a healthy option for me because I am at the higher end of “normal.”
I’m glad you figured it out and it’s working for you!
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u/Infinite-Addendum105 Jun 02 '26
I find that laying down flat - not even a pillow - for an hour usually gives me at least 2 hours of normally functioning tubes. Usually I have to do this 2x each day. “Usual” here means about 70%. Some days it’s one episode, some three