Hi, I was diagnosed with what they think is patulous Eustachian tube about three months ago. I don’t have the earful fullness anymore, but sometimes my voice can sound a little funky/muffled to me. Since this happened, I’ve also been dealing with pulsatile tinnitus. Has anyone else dealt with this and what have you done for it? I also enjoy working out and every time I work out, it feels like something is shaking or flapping in my ear. Would love to hear what others are experiencing and what has been working for them, thanks in advance!

I've just come out of an appointment after being referred to an ENT who said "there are no treatments and nothing you can do" for PET. He then proceeded to tell me that I shouldn't use saline solution in my tubes because "they are delicate structures and it will cause problems if you try to spray saline into them"

losing my mind here. I just needed a rant at how poorly educated UK doctors are.

For the last 7 or so months, every day, Monday through Friday starting around 2pm until late evening, my right ear gets muffled like I'm under water, I hear myself talk, I can feel the air I breath sometimes. Yawning doesn't help. Holding my nose and breathing out makes it worse, not better like it does when my allergies cause similar issues. Its only happening at work. I've stopped using my ear piece for a whole week, no help. I drank a ton of water, no help. Other than normal work stress, I can't put my finger on the cause. It mostly only happens at work, but it has done it on random days or outings, like a recent beach day. Bending over with my head between my legs is the only relief. After several hours or overnight it goes away and comes back at almost the same time daily.

I had the worst double ear infection of my life during Christmas which resulted in my left eardrum rupturing, my right might have too. I didn't have any ear issues for several weeks once it cleared up, but I had a lingering cough and breathing issues for months that finally went away as it got warmer. But this issue started around February and has been happening since. Its weird and fucking annoying.

How is everyone using the saline nose spray? I have been spraying in my nose while gently breathing in, head tilted to the side, until I feel a sensation in what I think are my ET. I do this a few times a day or whenever my PET are bothering me. Today while doing this, I had the sensation of a large amount of saline rushing into my inner ear. The sensation FELT like saline pressing up against the inside of my ear from but feel like this is a long shot. I’m wondering has this happened to anyone else? Also, has anyone gotten inner ear infections from doing this?
Thank you!

I've been dealing with what multiple ENTs/neurotologists have diagnosed as Patulous Eustachian Tube (PET) since early 2024, and I wanted to share my experience because I almost never see this treatment mentioned.

My symptoms started after relatively modest weight loss (they began after I had lost only about 15 pounds). They are primarily in my left ear (probably 98% of the time), although I occasionally experience them in my right as well. My symptoms include autophony (hearing my own voice loudly), aerophony (hearing my breathing), hearing my heartbeat, and fullness in my ears. They are intermittent, and anything can set them off. I could be brushing my teeth in the morning or I could swallow at any point in the day, and they would "click" on. Like many of you, my symptoms would improve if I put my head below my knees or lay flat.

Over the past 2 years I've seen 1 ENT and 2 neurotologists. The initial recommendations I received from the ENT and first neurotologist included:

• a CT scan to rule out superior semicircular canal dehiscence (which ultimately was normal)
• fillers around the eustachian tube, which comes with the risk of overcorrecting and converting PET into eustachian tube dysfunction (ETD)
• progesterone nasal spray, which has been used off-label for PET in an attempt to create swelling around the Eustachian tube, but comes with potential systemic hormonal side effects (e.g., abnormal uterine bleeding and gynecomastia)
• observation as my weight stabilized because it was possible that my body would find a "new normal"

After my weight had stabilized for a year, I was growing increasingly frustrated that my ears were not finding their "new normal". I scheduled a follow-up appointment with my ENT to review my options, and he recommended a pressure-equalizing (PE) tube as a potential treatment. His theory was that the primary problem was not my Eustachian tube itself, but a small monomeric (thinned, hypermobile) area of my left eardrum. He explained that placing a PE tube through that area would eliminate the abnormal pressure changes across the eardrum, preventing it from moving excessively and transmitting my internal sounds. What I found attractive about this approach was that, unlike fillers or more advanced PET procedures, it was relatively straightforward, minimally invasive, reversible, and could provide immediate symptom relief. If it worked, great. If not, the tube could be removed, and other treatment options would still remain available. Before proceeding, however, I scheduled an appointment with a new neurotologist for a second opinion.

The new neurotologist said a PE tube would actually make my PET worse, and instead recommended a paper patch on my eardrum. He explained that instead of treating the eustachian tube itself, the paper patch temporarily adds stiffness/mass to the tympanic membrane so it doesn't move as much with the pressure changes from PET.

The procedure took only a few minutes in the office. To my surprise... it worked. Within a day or two, my symptoms improved significantly. The neurotologist told me that the paper patch can remain in place for a few months, although it may fall off sooner, particularly if it gets wet. He recommended protecting the ear while showering to help it stay in place. He explained that I likely would not feel the patch come off because it is so small; instead, the clue would be that my symptoms would begin to return after I had been doing well. If that happened, he recommended simply scheduling a follow-up appointment, as the patch can be reapplied in the office at any time.

It has been 6 weeks, and I've scheduled a follow-up appointment, because my symptoms have returned.

I'm surprised that after seeing multiple specialists, no one had suggested paper patching until this most recent appointment. It's obviously not a permanent cure, but it was inexpensive, minimally invasive, completely reversible, and gave me meaningful relief.

If you're considering more invasive procedures, it may be worth asking your otologist or neurotologist whether you're a candidate for paper patching (TM loading) first.

I'm curious whether anyone else here tried paper patching? If so, how long did it last for you? Did you end up repeating it or eventually moving on to another treatment?

Any lifetime sufferers? For most people it sounds like it has a sudden onset with a specific cause? I've had PET my entire life in both ears, or at least as long as I remember, definitely since I was 4.

I have had what I think is PET for about a year now. Lost 8kg rapidly a year ago due to depression and on top of it all had a surgery for otosclerosis in my ear. Great combo, I know.

Anyways, since then I have had bad autophony of my voice in that ear and a feeling of blockage. At first I thought it was the surgery causing this of course but my hearing has improved since the surgery so it looks like it worked the way it should.

Anyways to my question, it seems that I can alleviate my autophony by pressing with two fingers below my ear just where the jaw starts. If I keep pressing that spot my autophony is almost completely gone. Anyone else experiences this?

One summer when I was almost 9 year old, I got a sudden ear infection and my eustachian tubes were super closed, but after I cleared my ears using hydrogen peroxide it was so weird and different. Every time I yawn or swallow my ears clear and every time I sniff they close or like "lock" into place. Since then, I didn't tell anyone even though it was a weird sensation because I have crazy health anxiety and it makes me really avoidant to healthcare. But, last night, I looked up my symptoms and found lots of posts describing similar experiences. Does this seem like PET or something else? Also, does it ever go away? Obviously I've had it for a big chunk of my life (booo) so for me this is "normal" but I want to not have to deal with it. Are there treatments?

Been dealing with PET for over 1.5 years now. Started after getting a balloon dilation for an obstructive Eustachian tube. My symptoms are a lot better and are not constant like before however my ear does still open up every morning within an hour or so after waking up. Caffeine and stress definitely make it worse. By the afternoon/evening my ear feels completely normal. The cycle restarts in the morning. I just want to know if there is chance this will ever go away or is this most likely my new baseline. I do have TMJ but it’s been controlled for years, I see a specialist. When my ear is open I hear my voice and breathing, when’s it’s like that I don’t even want to talk to anyone because of how distorted and loud my voice sounds in my head. Putting my head down only helps while my head is down, the second I am upright my symptoms return. I have used Patulend although I wasn’t a fan of it irritating my throat. I prefer to just use hypertonic saline spray when it’s bad which will give me a few hours of relief. Eating completely gets rid of symptoms too. Has anyone else experienced this and had it revolve?

Last week I was diagnosed with pet and I'm trying to understand what exactly happened. 2 years ago I was diagnosed with mold toxicity and got really sick. I left my apartment for a while and moved North I didn't realize that being a relatively higher altitude but not by much could cause issues.. at the same time I was dealing with mineral deficiencies and absorption issues ETC.. I started to get a lot of pressure and I wasn't able to pop my ear.. eventually it popped and then it was okay . After the winter started to get worse again and when I came back home it just progressively started getting worse.

For the past few months I've been dealing with extreme pressure in my left ear and in my left eye to the point of vision issues dizziness sinus issues swelling. I can't even see straight because of all of the lack of drainage. I'm unable to take medication or you sprays because of severe reactions. My ENT referred me to neuro autology. I didn't even know that existed. She said that I have very wide open eustachian tubes and that's pretty much causing a lot of my issues. I also have severe TMJ and occipital issues. I've been doing all the therapies and everything else. I do still have absorption issues and deficiencies because of all of the mold consequences.

I have an appointment with the specialist at the end of the month and she said that perhaps he could do the cigarette paper method or another non-invasive procedure that could alleviate some of the pressure in my ear and allow things to flow better.

Can anyone give me any insight or what to expect? I just want to feel better.

finally tried it. did it once. fully sealed my tube up for 24 hours. magical to not even hear the slightest clicking when swallowing, but also a little disconcerting tbh! don't want an ear infection; better if the tube is working but not too open. anyway, since that one use due to things getting worse than usual, i've been able to manage with hypertonic saline again, but it's nice knowing i've got some serious firepower sitting in my fridge when i may need it. people are right that it stings, though. such an odd place to feel intense pain, too. but yeah, anyway, pretty effective for me i guess, at least for now.

I’ve recently started wondering if y’all also developed PET around COVID times?

I had a mild covid infection in march 2020 and lost my taste and smell for 6 months, then I got the Spikevax shot in August 2020. I noticed my first PET flare sometime in summer 2020.

Wondering if anybody else has a similar timeline and if it’s at all related somehow

Hi everyone,

Here is my ear fullness/ pressure story sorry if it’s long, I am desperate for any potential advice or solutions you may have experienced!

I am 29, female, healthy, never had sinus issues or allergies before. 6 months ago I got sick and had a sore throat, fever, ear infection. went through two rounds of steroids and antibiotics all symptoms cleared expect the feeling of fluid and pressure in the ears.

Saw multiple urgent care doctors and then finally an ent who was on the scammy side and insisted I needed balloon dilation in the eustachian tube and sinuses, interior turbine reduction, and some radio frequency. I took forever to heal from the procedure and months later my ears are 0% better, if anything the pressure is worse now. I’ve tried chiropractor, allergy tests, a second ENT, no solutions.

Now I am wondering maybe my ears are not plugged, maybe I have PET? when I try the vasalva technique my ears clamp down but never pop open, it actually makes it worse. Recently I’ve started hearing my breath and my inner head movements in my ear.

I recently got botox for TMJ as I do clench my jaw and have seen that it helps people. I’ve tried the massages for the jaw and neck and traps and am just at a loss at this point. The dentist that did my TMJ Botox did notice that my condyle bone moves more than it should when I open and close my jaw and my whole ear and tragus moved a lot when I open and close my jaw.I’ve also started acupuncture and cupping of the neck and traps.

Any advice or solutions are so appreciated, I cannot live comfortable or get even one minute without ear pain or pressure thank you!

Suffering from vertigo, distorted hearing. Insanely loud tinnitus so much I couldn’t sleep. Every doctor said to wait for the ENT appointment when I can’t sleep. Out of desperation and the need to sleep I tried the Valsalva technique. I did it gently quite a few times and stopped if felt too much. The next day I had vertigo worse than before, the tinnitus is worse and now my ears click when I swallow and I can hear my own voice loudly 😭 I’m usually so careful with anything to do with my health and I’m kicking myself for not looking at the risks before doing it. I guess I’ve messed my ears up more from this. Someone please tell me the body can heal naturally from this 😭 What can I do to reverse it?

I finally worked up the courage to try DIY Patulend. I've been reading all the posts and tips for a few months.

To prepare, I blew my nose and I put some Vaseline in the nostril of the affected side with a swab. I took a little bit of honey to coat my throat.

I used about a 6% solution (1/2 tsp. ascorbic acid to 30ml distilled water). I was afraid to try any more than that. I used a 1ml syringe (very narrow) so I could get it as far back in my nose as possible.) I only drew up .2ml of the solution.

I laid down on the edge of the bed with my head tilted over the edge and introduced the syringe perpendicular to my (horizontal) body. I shot the solution into the back of my nose, tilted my head about 45 degrees to the affected side and waited, while yawning, moving my jaw side to side, doing a reverse Frenzel maneuver, sniffing--all the recommended things. I stayed lying down about 30 seconds to a minute. When I got up and the stuff started running down my throat, I had to chug some seltzer.

Yes, it burned, but not as bad as I expected. About as bad as the hypertonic saline with a citrus kind of zing.

Now I just feel like I have liquid in my inner ear along with an afterburn. No improvement in symptoms.

Should I notice an improvement immediately if it's gonna work? I was expecting maybe some crackling, but no crackling. I would have liked some crackling. Do you only start to experience some relief after two months of doing this daily, like it says in the Patulend instructions?

Does anyone see any problems with my technique?

Thanks.

Have to take prednisolon tbl because of obe ear is ETD. terrified for the other ear who is patolous. Feel lost....

Been suffering from PET for seven months now - I was diagnosed two months ago, and the doctor seemed convinced that I’d get better eventually, though he couldn’t give a timeline and said it “could take a while”. I’m clinging to this hope but find it hard to believe in as I don’t notice any changes day to day!

Would love to hear some stories from people whose PET resolved or improved over time (especially those without treatment). Please don’t respond if your PET is still bad years later or something like that - I know this happens but reading about it puts me in a very bad brain space.

Thank you!

Hi all, I’ve been living with PET in one ear for 11 years. It took me a few ENTs to find Dr Brian Rotenberg in London, ON.

He was incredibly kind and understanding during my consult a few months ago, and almost immediately noted my Eustachian tube was “wide open” after checking me out with a cam. He appears to be one of the few ENTs a) familiar with this condition and b) offer treatment for it. It costs $3500 and is not covered by provincial health care or insurance.

I had my procedure yesterday. His team was SO kind and reassuring. I’ve had a few procedures under general anesthesia and have to say this time was the most peaceful.

Procedure took less than an hour and involved taking a bit of fat from my abdomen, mixing with some filler (I think) and injecting into my Eustachian tube.

I was initially a bit worried as he had prescribed me painkillers, as well as T3s, nasal spray, and a decongestant. However he assured me these were only if necessary, and that some people felt a bit of jaw pain afterwards.

I woke up with a sore throat from the breathing tube and that was it. I’ve got a dissolvable stitch under my belly button (apparently - it’s under a bandage). That is a bit tender if I poke at it.

My right ear is a bit crackly as Dr Rotenberg said to expect. No pain anywhere. I’m supposed to chill for 3-4 days and then I’m able to resume gym stuff.

I had a tiny bit of blood come out from my nostril while travelling home. Otherwise nothing!

No PET symptoms either, but I understand the recovery isn’t a straight line and may come and go for a few months. I have a follow up at the end of July.

I was able to enjoy humming to myself all afternoon yesterday for the first time in over a decade :) no vibration, no autophony, just quiet. Fingers crossed I’ve found my cure.

I have found PatulEND to be helpful for my autophony symptoms, but it does seem to drip into my throat more often than not.

I’m wondering if anyone who sings here has found negative impacts to their larynx or vocal cords with sustained use of patulEND. Since the mechanism that makes it close the Eustachian tube is basically irritation, I’m a bit concerned it will irritate my throat consistently with prolonged use.

Would love any insights from people who have been using it for some time.

So Ive had this issue(PET and autophony in one ear) for years and since a bout of weight loss last year between jobs, I can't go a day without relief, even with patulend and lifestyle changes. I'm waiting on a hearing/ET dysfunction test in July which hopefully helps me get a diagnosis, but I honestly wouldn't be surprised if they did nothing and sent me on my way at this point. I had someone test me before and affirm my feelings without a diagnosis, but I have to wait now for this test and months for an appointment after. What can I do?? Will I ever be able to live my life again? I gained half the weight back, but it was still debilitating at my last job, so I fear I'll just be disabled and forced to work a job where I don't see other people or have to talk. Thanks all

I got great relief making my own PatulEDN. Mixed 1/2 distilled water 1/2 Lemon Juice and my ears are completely closed and I can feel a big difference. Hopes this helps who needs it.

Autophony is unbearable, there is no relief nothing closes them, being at work I talk to no one because I can’t bear to talk, I have no context on how loud my voice is to other people and losing my mind. Any success stories, permanent fixes for this condition that have helped people. Nasal spray does nothing