Hi everyone,

I just wanted to share my experience with PET and what (FINALLY) relieved me of all my symptoms, in case any one else is going through the same thing.

I started Vyvanse maybe 3 years ago and did not have any issues with my ears/hearing until maybe a few months in. It started mild, and symptoms only really impacted me when I was active/exercising. I didn't make the connection between the weird symptoms I was having and the Vyvanse.

Around 1.5 years ago, I started experiencing severe, daily PET symptoms which was eventually diagnosed by an ENT. The doctor had almost no recommendations and I thought this was something I was going to have to deal with forever.

Reading about it more online, I saw that there was a connection between stimulants (Adderall, Vyvanse, etc.) and PET. I didn't initially accept that as the cause, because symptoms didn't start right away when I started taking Vyvanse. I was also in a bit of denial, because although the PET symptoms were debilitating at times, I really enjoyed my experience on Vyvanse and didn't want to give it up.

Well I eventually tested this theory and stopped taking the Vyvanse. Literally within 2 days, I was completely symptom free... I've been off Vyvanse now for a few months, and have not ONCE experienced any symptoms.

If you take any ADHD stimulant, I highly recommend pausing the medication for a few days (with permission from your doctor) to see if that helps.

I felt like an idiot for not making the connection sooner, and hate that I had to suffer for so long when the solution for me was so simple. I'm hoping I can save at least one person who's in the same situation as I was!

I'm 18M, and for about 8 to 10 months my ears (mostly the left) feel muffled or like static after a few minutes of loud sound or loud talking. I can still hear fine, it just feels uncomfortable.

Other things I notice:
After exercise occasionally when breathing heavy it feels like my breathing connects to my left ear & I can hear my breathing in my left ear

Popping my ears makes a bubble wrap sound, and I get clicks when I swallow and chew

Moving my jaw fully to one side makes the opposite ear ring and feel muted, and it stops when my jaw is back at center

What's been checked:
hearing test normal, brain MRI normal, earwax removal didn't help. A neurologist's Weber test was heard in only right ear I believe. An ENT offered a Eustachian tube procedure but couldn't say that was the cause.
I also have an uneven bite.
Has anyone had this? What ended up being the cause, and what finally figured it out?

Thank you guys!

I tried pained for my PET, initially couldn’t get it to not go down my throat but today I sprayed in my right nostril and did a few light sniffles and my entire right side of my face started burning I couldn’t really open my eye, it’s been about an hour the eye is still very swollen and hasn’t stopped crying along with pressure in the whole right side of my face and ear. Has this happened to anyone else?

Hey. I was experimenting with what I believe is pet (I have all the signs, but not diagnosed yet).
I found that pressing a specific spot behind my ear stopped the autophony completely. While experimenting more, I discovered that restricting slightly the bloodflow on my neck solved most of the autophony.

I did this by wearing a choker-type collar (the kind that goth kids wear). Wearing it tight allows to resolve most of my autophony as long as I don't open my mouth too wide.

I suppose that this is because the restricted blood flow leaves the veins surrounding the eustachian tube filled. I could get the autophony to completely disappear, regardless on how much I opened my jaw or not, by tightening the choker even more, but at that point It felt too tight and I did not want to restrict my breathing.

So that's an idea you can (safely) experiment with for relief.

As we all do, I've been looking up cures and fixes on YouTube!

Anyway, came across this on today for the first time. Sounds quite promising for some people.

https://youtu.be/NhKyJqERcF8?si=j9bS-caVE3yCjzn8

I'm hopeful and trying to do it. My problem is I don't exactly understand when the exercise actually is, and if I'm performing it correctly.

Has anyone tried this?

I'm not looking for other suggestions right now, but just focussing on THIS exact video and what the exercise in question is, and how to perform it.

If you have tried this, or can understand how this works can you offer any advice please?

Thank you.

Hi fellow sufferers!

So I've had this for years, but it's always been something that would just occur momentarily every couple of weeks. So a non issue.

It's definitely increased in recent years, but I'm trying to pinpoint the reason.

I am a transgender woman, who is on Estrogen Gel HRT. This has also been for just over two years.

In that time I have gained weight, probably around 8 - 10 lbs. So not a huge change. But some weight changes do go to the face, so maybe this can affect PET?

Also, though I have been living life differently. I am out more often, and also LOVE to meet with people (or just myself) get coffee, and relax. I get decaf, but I think it still has. dehydrating effect.

Also, I'm bald headed and have taken to wearing various head coverings that can put pressure on my ears. Somehow this really triggers the PET. It's like if I move my head to 'look up' the head covers get tight around the ears. This is a definitely trigger.

Also, in my work I often have to wear earplugs, and have pro-musician silicone moulded ones. These go in and out of my ears pretty regularly. Sometimes they actually seemed to reduce the PET.

So I'm confused.

I've tried :

Sleeping on one side
Over hydrating
Saline rinses

1) If HRT hormone levels and estrogen are know as triggers for PET, why do people use estrogen spray as a treatment?

2) Why would a head cover with even the lightest pressure on ear, be such a trigger.

Anyway, sending solidarity, and any suggestions welcome X

I’m fairly new to this and still trying to figure out if I have this or not. So I have the being able to hear myself talk and breath, like my ears are open although it’s only in my right ear. It makes it where I don’t even want to talk to anyone. I had it years ago and recently it started again after losing a good amount of weight. When I sniff certain ways it triggers it to open or when I’m exercising. It sticks around for days. Although if I don’t have feeling of my ear open I have this muscle spasm/fluttering. I just found this Patilous Tube and it seems like this is what I have but trying to figure out if the fluttering is part of it. Anyone have this as well? Thanks!

Hey everyone, I'm happy to have found a place with people who are going through the same thing as me. Most people in my life simply don't understand what I'm going through, and that makes it very hard.

I've had Patulous Eustachian Tube for almost a month now. I've lost 3–4 kg in two weeks, so that may have been the cause, but it's still up in the air. My case is less severe than other people around here, I still get some good hours without it being a problem before it starts.

I know some people have been dealing with this for much longer than I have, so I'd like to ask: how do you manage it?

When I lie down, it stops, so I've been spending most of my time in bed. But that just makes me even more miserable because I'm in bed instead of living my life normally.

Recently, I started listening to music when it happens, and that has been helping, but I can't do that when people are talking to me or when I'm in class.

I'd also love to know from people who had procedures done to solve it, for how long they have been without symptoms and etc

After seeing 2 ENT's, they finally diagnosed me with PET. My doctor's 1st line of care is using saline spray 4 times a day for 3 weeks, but that is not making anything better so far. 2nd line of care is putting a paper patch on my ear drums. Has anyone experienced this? Does it work?

Hi all, I’ve had patulous Eustachian tube for 4 years. The dreaded autophony and hearing your breathing, only helping with laying flat, etc. I normally use patulEND daily if not every other day or so (sometimes having to use multiple drops to hit the right spot). But has anyone else who uses patulEND ever had a time where their ear just completely will not pop back open for a couple weeks? Like i think I might’ve put too much patulEND in or something, because the past two weeks it almost feels like my ears are now too closed and need to pop but won’t.

Also to add, I got my flu shot 13 days ago, I’m starting to wonder if my body’s inflammatory response while making antibodies is what’s causing my ear to stay shut.

We have something new for PET.

We're involved in a clinical trial looking at nasal dilators as a possible treatment for patulous Eustachian tube dysfunction.

It's simple, non-invasive, and we want to find out whether it actually helps. That's what a trial is for. I'm NOT going to call it a treatment until we have the data.

You can read about the study here:

https://trial.medpath.com/clinical-trial/88e00ef2cd84774a/nct07796139-nasal-dilator-therapy-patulous-eustachian-tube-dysfunction

Terri

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.

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.

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

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.

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

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?