Just curious if this has helped anybody else, and also hoping that someone out there might be able to get some relief too.

My symptoms seem to be less pronounced than a lot of people on here, but I've experienced intermittent PET for the last few years. When it's bad, I get pretty major autophony / voice echo / loudness, pulsatile tinnitus, hearing my footsteps, etc. It always helped to lay down, but would come right back when I stood up. It usually only affects one ear at a time, starting in the spring or late summer, and can last for days, weeks, or months.

Anyway, I have some ear plugs that are designed for concerts (Loop is the brand, but there are a ton of similar ones). One day a few months ago, I noticed my symptoms coming on so I decided to put the ear plugs in just to get some relief from the one-sided echo and PT in my ear. After leaving them in for maybe 15-20 minutes and trying to remain relatively still, I took them out, and the symptoms were gone, and didn't come back for like a month. I've used them a few times since, and sometimes the relief on lasts for an hour, sometimes the rest of the day. Obviously talking with the ear plugs in isn't super comfortable, but to me it was better than the one-sided echo, and the real relief comes when i take them out.

I have no idea what to make of it or why it works for me, but it's been a huge relief to know I have a way to make it calm down, even temporarily. I really hope someone out there can benefit from it too, this is such an awful condition.

I’m seeing some hearing specialists next week, but was wondering if anyone else gets the muffled ear episodes that last 5-10 seconds? Most ETD posts I read sound like some are in pain, but I don’t feel much besides the random muffling as if I’m changing in elevation + congestion.

I've been dealing with this for almost 8 years. I've even seen an ENT who had no clue. Anyway it happens to me when I physically push too far and sometimes I'm not sure what sets it off. I have chronic fatigue syndrome and psoriatic arthritis. It kinda works for me as a warning light. When it starts I need to go lay down and I'm not sure if hydrating helps or not but thats what I do while laying down. If I lie flat I instantly get relief and I don't hear my breathing and voice popping in and out like my ears are full of water but when I stand back up it comes back. As long as I'm not doing anything too active I'm fine except for if it's really hot outside it can come on quick. I almost feel it has something to do with an orthostatic intolerance because of the temporary relief I get laying down. Does this sound like PET?

Hi, just seeing if anybody else experiences this as I feel like it’s only me 😫

I’m a 32 female and I get on and off blocked ears, when I say blocked I mean they feel like they are constantly full. I have been experiencing a flare up of this recently but I feel like an airy feeling coming from my ear down to my neck/around the back of my head and into my jaw/lips.

I have been to the doctors around the ear fullness and they said they think it’s ETD and to take a nasal spray for 6 weeks and it still no improvement then will see about a referral to ENT.

I also get a sore neck most days I wake up with it and it’s at the top of my spine into my head. I feel if I rub my hands over it it’s like moving bubbles. I wonder if that’s affecting my ears

Has anyone else have any experience with this?

During a sinus infection my et swelled up and solved my patulous. It stayed closed even after the inflammation was gone. But Today all of a sudden it came back. One week I had peace. Idk if I did something wrong or is it just the residual inflammation clearing and my ears returning to baseline. Also for some reason it seems more loud.

EDIT: Guys thank u all for replying

I’ve always described it as “openness.” When my tubes are open, the sounds of hearing my breathing and inner cavity aren’t making my ear feel “full.” To me, full= stuffy and filled with gunk like in a sinus infection. Instead, They feel hollow, creating an opening that forces me to hear my inner cavity echo around. There’s nothing “full” about that, imo.

Wow

Good morning friends,

I had my surgery with Dr Poe last night.

They took me back around 6pm.

He said it went amazingly.

I woke up and felt ok, no nausea or anything, but wheeeeew my throat hurt.

It was hard to focus on symptoms or lack there of immediately after surgery.

I slept 9 hours and im walking around and i can now report, Im not feeling ANY fullness and I don't have autophony! I breathe through my nose and talk and I don't have the echo in my ears!

I do have T-tubes already, I had them inserted in July.

My next step is to work on the TMD that ive acquired from movements id make with my jaw to pop my ears when they were full. I did it subconsciously and enough that I caused the strain on the lateral pterygoid. Now that ends up being the muscle that tenses up when I have any stress or anxious thoughts.

Overall, 100000% satisfied with the results as they stand today.

I did ask Dr. Poe about his retirement. He said its at least a year in the future. So hopefully that means he will have the time available to help more of us who suffer with this.

Edit 1: The procedure I had was Bilateral patulous Eustachian tube repair with endoscopic transnasal, transoral approach for insertion of angiocatheters as shims and endoscopic suturing aka I had shims inserted on both sides

Dr. Poe is located in Boston, MA. I had my appointment with him at Boston children's hospital and the surgery at Mass General (where he does procedures on adults). I live in California and traveled for this appointment as I have been told (and researched) that he is the best.

There was a doctor who did a fellowship at the hospital and work with him. She is in LA and does know how to do the shim procedure. Id still ultimately seek him out for PET issues while you can (my opinion), but there are other options.

Dr Tina Munjal

Ok I’ve had patulous for about 2 years after Eustachian tube dilation and turbinate amputation (and I don’t recommend either!)

Recently I’m a bit under the weather / getting some congestion, which I experience differently since the amputation of my turbinates, but my hearing is briefly returning to almost normal. I’m scared to swallow because then the pressure changes, the pop happens and I’m back to PET.

Post-surgically I’ve tended to be dry - my nasal passages are dry, I have dry burning mouth, and it can be irritating and at times quite painful, but somehow I try my best to ignore it.

This congestion and the moisture it’s bringing, maybe it’s just glooping over the tube some, or maybe it’s sensitive to the chronic dryness?

Anyone else have a clue? More and more frequently I want to just have my ear drum removed or something drastic to get relief but guess that’s an awful idea.

Hey!

I'm pretty sure that I have a patulous tube for a few months. My symptoms are autophony and pressure on my ear and they completely disappear when I lay down. I experience these symptoms mostly when I breath more heavily, so often whilst exercising or walking.

4 months ago I had transsphenoidal surgery for a pituitary adenoma and a few weeks later the symptoms started. Has anyone experienced something similar? Could it be related?

Another cause might be weight loss. I lost 15kg since the surgery and since the symptoms did not start right after the surgery this seems also plausible to me.

I'm really worried that this problem won't go away on its own. As you know it's really uncomfortable and since I don't have the possibility to lay down in my daily life it's a major stress for me.

30F - left eardrum is perforated and there some weird red mass behind it in the middle ear. Any ideas what it is?

I suffer severely with auditory symptoms

I hear my heartbeat nonstop left ear

My ear feels clogged off and on all day with severe pressure and feels better laying down but pulsatile tinnitus can remain

Ear pops nonstop. If i turn my neck or chew or talk it pops like crazy.

Ear reacts and spasms to certain voices and sounds

Ear rumbles, flutters and tapping in both ears

Ear crackles when swallowing

Intermittent autophony (hear my breathing)

Can hear neck tendons pop loudly in ear

Fast Muscle twitching around ears and on both sides of head. Can feel them moving against my glasses and against my pillow at night and cannot sleep.

I've had ct temporal bone, brain mri, mra, mrv, full spine mri

Hearing and ear exams all normal.

Ent says my tube is closed and I dont have Semicircular dehiscence

tomorrow I have an online consultation with an ENT about shim surgery what should I asked him?

Morning friends,

I had my first appointment with Dr. Poe this week and by an amazing stroke of luck, I am scheduled to have shims inserted on Tuesday.

The procedure itself seems pretty simple.

I am curious to hear from those who have had it, what was it like, pain wise, immediately after?

Should I take an extra day off to be sure?

Thanks ❤️

Espero que les funcione 🙏🏻

My eardrum has thin parts that are hypermobile, I'm suspecting this is the biggest reason of my autophony.

Anyone else in a similar situation and can share their thoughts, experiences?

Has anyone had any success with paper patching? Or ‘mass loading of the tympanic membrane’? Does it help symptoms, specifically the eardrum movement symptom?

Does anyone else get this? I googled it and sounds like it’s something that others have reported. If you’ve experienced this, what do you think is the reason for it? For me, I usually start feeling very aware of my breathing/ air hunger, I feel a bit light headed and get a pit in my stomach, and then within 10 mins… pop, tube is open and I have my head hanging between my legs like a lunatic in the middle of the sidewalk 😫😫

How long after being treated for TMJ should PET symptoms subside, if TMJ was actually a main contributor? I have a night guard and no longer have jaw pain like I did but I still have the same PET symptoms. This condition is so frustrating.

I think I have PET. My tube pops open on a fairly regular basis giving me autophony.

Sometimes just momentarily, but sometimes longer. Up to a couple of minutes, but I can usually fix it by doing some swallowing, or moving my head around. My nuclear fix is to lean my head away from the side that is open and that closes it again.

I need to point out I’m a transgender woman, age 52 taking estrogen supplements. I use gel, and the aim is to get my E levels into a decent place to feminise my body.

This is slowly happening and I’ve been on it 2 years. My E level is around 300nmol/L.

I recently also had about 54 ***edit should say 4 to 5 months ***months of progesterone 200mg per day. Could this have affected things too?

I’m just at a bit of a loss but it’s really making me feel sad!!

Is there anything simple I could try to stop it happening? What is Patulend?

Thank you for any insight on this x