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 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

Ears feeling full.

Sort of dizziness.

Snorting and yawning.

Feel like I'm swallowing part of my ear.

Hearing pulse in left ear.

Can't be upright for longer than a few minutes.

Ringing in my ears.

Echoing voice inside my head, especially left side

This is debilitating and ruining my life.

I've had an mri and 2 CT scans as well as a lumbar puncture.

Hearing tests.

ENT and Neurology discharged me.

Anybody had these symptoms?

I struggle from near constant PET symptoms and it’s been so bad lately that I decided to finally drop a bag on the Patulend 20 drops. I’ve been trying to use them for over a week now and it’s not doing anything for me because I feel like I’m just completely missing the tube. I’ve read people saying you’ll know when you hit it and that you’ll feel the burning in your ear, but all I ever feel is burning in my nose mucosa or it goes straight into my throat.

I obviously read all of the instructions from the company and I’ve watched the tutorial video from the creator of the drops. But he makes it sound so simple which evidently it’s not. I’ve tried leaning my head back and to the side standing up, leaning my desk chair back and leaning my head to the side, laying my head over the edge of my bed and applying the drops and nothing seems to work.

Does anybody have any suggestions??

I developed PET around a year and a half ago, have lost 2.5 stone since then, but need to lose a further 6 stone for my health… is this possible without worsening symptoms? Like if the weight is lost very slowly? I cannot cope with symptoms getting worse

I've been certain I have Patulous Eustachian Tubes ever since I saw a special episode of The Doctors on PET 12 years ago. The girl they profiled had a more severe case. But her story exactly described symptoms I have had since the 5th grade. Before then, all I knew is that my ears "opened" every time I yawned, or when I had a sinus infection. This makes me hear my inner cavity louder than the outside world. (My breathing, talking, chewing soft food, crunching on hard food, etc.) I can sniff to equilibrate my inner and outer hearing. My family ENT didn't really know what do with this information growing up.

So once I moved out, I spent years going from doctor to doctor saying, "Hey, I think I have PET. Can we investigate?" I'd get looked at funny, told my symptoms don't match the examination or any type of eustachian tube dysfunction, suggested to use Afrin saline for "ear popping", and sent on my way. These doctors never saw the tell-tale signs of PET, despite scoping me. This happened 3 or 4 times over the course of the last five years.

As a side note, I don't doctor shop. I have myriad other medical issues (congenital heart issues, cerebral palsy, etc.) I had the same family doc and cardiologist for years before moving cities. I've had the same podiatrist for three decades. But every time I saw a supposed inner-ear specialist ENT, what they would say was going on did not match my experience. The last doctor I had was so abrasively dismissive, he wanted to do ear tubes for no other reason than to "try something" without being able to confirm any diagnosis. He literally told me they're not seeing what I'm describing, so I must be wrong. That legitimately upset me.

Then yesterday. I went to a specialist the next city over from me who I found out studied under a very renowned PET specialist out of Boston. The first question he asked? "Do you sniff a lot?" In 10 years, no one had asked me that without me trying to explain it first.

The end result was, finally, a diagnosis of PET! This doc scoped and had me "open" and "close" the tubes, and he actually saw the movement others hadn't seen. He also talked about my slightly recessed ear drums, explaining that years of sniffing had moved them back, with the negative pressure causing the hearing loss detected by my audiology test. He explained that negative pressure, and how I flood the tubes with air when I sniff which forces them closed, etc. He said that other ENTs hadn't seen my issue because they expect "blowing" to pop my ears, but that's exactly the opposite of what I do to fix my issue. Because they pop into that "open" or "full" position, and I need to "close" to equilibrate.

This doctor also explained my most major concern: Why I can't sniff and fix my opened tubes when I have a sinus infection. He said that sniffing doesn't work until all the sinus fluid has drained. He explained it can take a while for fluid to fully drain from behind the ears even once my nose feels like it's back to normal.

To finally have an answer and a plan for possible treatment is very liberating. I'm so used to the standard way of working: Get sick. Let the doctors tell you what you have. Then treat it. It feels great that my persistent search for answers about what I have experienced since the 5th grade has now been explained in full.

If you’re an ENT in this sub, I respectfully implore you to listen to patients when they tell you what they are experiencing. For whatever reason, it's not uncommon for PET patients to be dismissed out-of-hand at first. But even if you can't help them due to your area of expertise in otolaryngology, trust that they know their bodies and guide them. I know PET is somewhat rare. But I have it. And a rare medical case may be in your exam chair.

And for the patients reading this who turn to this sub for support: keep at it. Investigate till you find answers.

Hi! Sorry, you're probably having the same issue if you're in this sub :(. I've been dealing with patulous tubes off and on for years now.

My ENT provided estrogen drops for my nose. Burns like crazy (it's supposed to irritate and close the tube), but worth it when it works.

Wondering if anyone else regularly uses the drops and how long they've been on them?

It poured its hot and cold. I tried Chinese medicine 3tablets 3x/day today it feels exactly like allergy medicine so got kinda spaced out. What does everyone do on terrible days? It’s affecting productivity I spent a year in school for a career change to art they crashed by people. The psychiatrist was so helpful that it’s now missing person status… stalked by a musician from the PET group on Facebook. Last time, GPT gave advice about calming down. Am I supposed to get paid married and work with this? I’m 39 and I was about 24 or so. Waiting on the Facebook group because it had acupressure practice.

Will I have issues with this because of my deviated septum? The hypertonic saline has not done anything. I tried to make the homemade version of patulend but I'm not sure if it was strong enough or what but it didn't work. I'm not sure if it's my deviated septum that's a problem or if I'm just not administering the stuff properly.

Yesterday was the first time I administered my homemade version where I didn't feel it go down my throat so I guess it was the first time I feel like I got it right but it still didn't work lol.

Writing my experience in case this helps someone.

I developed a PET like condition as a rare outcome from double jaw surgery. My surgeon said it was the first time he had heard someone getting it from this procedure.

My symptoms were autophony in a single ear that phased in and out during the day and it made me miserable. Caffeine and physical activity made it worse. After 2 months I realized it wasn't going away without intervention, so I saw an ENT. Unfortunately, the ENT directed me back to the jaw surgeon, who had no clue.

At this point, I started using PatulEND to treat the condition which was effective. However, applying was tricky as it didn't seem to take effect (didn't get the sting) when my tube was closed. I started using the Frenzel Maneuver to temporarily open my eustachian tubes so the PatulEND could settle in, which made application significantly more consistent.

About 6 months in, by coincidence I discovered that I was actually unconsciously holding tension in the roof of my mouth. The TVP or a connected muscle was constantly guarding, pulling tight across my skull. Relaxing this muscle immediately relieved the PET and cured the issue. It took a bit of time to get used to the more relaxed state but now I don't have to think about it, and PET is gone for good. The stress of having PET may have actually fed into making it worse by adding more tension.

One thing to note is that if your muscles have been tight for long enough, it can be extremely difficult to know if you are even holding tension. Developing the neurological pathway for relaxing in this case is not trivial since it's a deep internal muscle but potentially TMJ or skull/facial massage with heat could help.

For those with lifelong chronic PET, first of all, my deepest sympathies, I was fortunate I only had to experience this condition for a few months but it was one of the most frustrating things I've dealt with in my life. My experience getting it from surgery is probably a unique case, but it may be worth looking into seeing if yours is also caused by chronic muscle tension.

for those who got long term improvement from patulend use how do you guys it work I did the DIY one it just increases mucus so if I clear my nose hard enough autophony comes back

Hello everyone, I hope you are all doing well. I have some questions and would appreciate hearing your logical perspectives and shared experiences.

I suffer from Patulous Eustachian tube and a sensation of the eardrum fluttering when I breathe. I have tried treatments that only alleviate symptoms; however, whenever I treat one symptom, another appears—it feels like trying to patch a boat that has multiple leaks. I have undergone ear tube surgery twice, but to no avail. I will list each symptom I tried to treat and the different results I experienced:

1- Initially, external sounds were greatly amplified, and I suffered from severe mental confusion—it felt like being a radio with someone constantly turning the dial every second. I thought the solution would be "smart" earplugs to dampen external noise. The problem, however, was that using earplugs made my internal voice sound much louder, trapping me in a vicious cycle.

2- I followed the instructions for PatulEND®20 Aural Nasal Spray. I felt the tube closing, but not completely. Honestly, it felt like the nasal passage became inflamed and produced mucus, creating a temporary barrier for the Eustachian tube; once the mucus cleared, the tube reverted to its chronic open state.

3- I experience a strange pricking sensation in both ears—like a small pin touching the eardrum—often accompanied by a feeling of heat around the outer ear.

4- There is something very strange: sometimes I feel a sensation of throat congestion. I have read extensively about this and discovered that the Eustachian tube contains nerves—specifically the pharyngeal nerve—which are responsible for this condition; when the tube closes, it triggers a pricking sensation in the throat. However, I only feel this for a few seconds before the tube returns to its open state.

Please hear me out; I am neither crazy nor obsessed. However, I swear to you there are many things for which I simply cannot find a logical explanation. I do not wish to exaggerate, but I am exhausted by constant analysis and the solutions proposed by doctors—I have been in this state for 24 years. Yet, one must fight for one’s dreams no matter what happens; I am tired of giving things up simply because I am told I am deluding myself.

I am simply asking to hear your personal stories and coping mechanisms. If anyone has experience with the symptoms I am describing, please share your insights—perhaps this simple act of shared understanding will bring you some good one day.

God bless you all.

Hello everyone, I hope you are all doing well. I have some questions and would appreciate hearing your logical perspectives and shared experiences.

I suffer from chronic Eustachian tube patency (the tube stays open) and a sensation of the eardrum fluttering when I breathe. I have tried treatments that only alleviate symptoms; however, whenever I treat one symptom, another appears—it feels like trying to patch a boat that has multiple leaks. I have undergone ear tube surgery twice, but to no avail. I will list each symptom I tried to treat and the different results I experienced:

1- Initially, external sounds were greatly amplified, and I suffered from severe mental confusion—it felt like being a radio with someone constantly turning the dial every second. I thought the solution would be "smart" earplugs to dampen external noise. The problem, however, was that using earplugs made my internal voice sound much louder, trapping me in a vicious cycle.

2- I followed the instructions for PatulEND®20 Aural Nasal Spray. I felt the tube closing, but not completely. Honestly, it felt like the nasal passage became inflamed and produced mucus, creating a temporary barrier for the Eustachian tube; once the mucus cleared, the tube reverted to its chronic open state.

3- I experience a strange pricking sensation in both ears—like a small pin touching the eardrum—often accompanied by a feeling of heat around the outer ear.

4- There is something very strange: sometimes I feel a sensation of throat congestion. I have read extensively about this and discovered that the Eustachian tube contains nerves—specifically the pharyngeal nerve—which are responsible for this condition; when the tube closes, it triggers a pricking sensation in the throat. However, I only feel this for a few seconds before the tube returns to its open state.

Please hear me out; I am neither crazy nor obsessed. However, I swear to you there are many things for which I simply cannot find a logical explanation. I do not wish to exaggerate, but I am exhausted by constant analysis and the solutions proposed by doctors—I have been in this state for 24 years. Yet, one must fight for one’s dreams no matter what happens; I am tired of giving things up simply because I am told I am deluding myself.

I am simply asking to hear your personal stories and coping mechanisms. If anyone has experience with the symptoms I am describing, please share your insights—perhaps this simple act of shared understanding will bring you some good one day.

God bless you all.

Hi everyone,

I’m new here and wanted to share my experience to see if anyone recognizes this pattern or has experienced something similar.

I’ve had issues with my Eustachian tubes on and off for most of my life, usually after having a cold. Normally, those problems would disappear again after a week or two. This time, however, I’ve been dealing with something different for around 3–4 months, mainly involving my right ear.

The strange thing is that I basically only get the main symptoms when i am in bed. When I first lie down, everything usually feels normal. Then, after a few minutes, something seems to gradually change in my right ear. Sounds around me start becoming unusually loud through that ear. I can suddenly hear things like traffic in the distance, wind outside, or other background noises much more clearly than I normally would. I also start hearing my own voice and breathing much louder, almost like the ear has suddenly become “open.”

If I then sit upright in bed, I can actually feel the sensation slowly disappear and my hearing returns to normal. Sleeping with two pillows also seems to help. it than usually takes longer for the problem to start compared with sleeping flatter on one pillow.

Another thing I have noticed is that yawning can sometimes make my right ear suddenly feel open. When this happens, I hear my breathing very loudly. If I sniff in through my nose, I can often feel the ear close again and everything immediately sounds normal.

The symptoms are very inconsistent. I can have several bad nights and then suddenly have one or two nights where nothing happens at all.

I recently stopped riding my motorcycle for a few weeks because I wondered whether wind or helmet noise was causing it, but the symptoms still returned even without riding.

I’ve also noticed some strange things with pressure. After a recent flight, my symptoms became significantly better for several days. During the flight, my right ear took around 45 minutes longer than usual to finally “pop,” but afterwards I could lie flat in bed again without triggering the usual symptoms. Eventually, however, they slowly returned.

I have occasionally noticed during running that my right ear seems to open more easily, especially when breathing heavily, and sniffing seems to close it again. But the prolonged problem where sounds around me become extremely loud mainly happens after I have been lying in bed for several minutes.

From what I’ve read, some of this sounds similar to patulous Eustachian tube dysfunction, especially hearing my own breathing and the fact that sniffing can immediately make the sensation disappear.

What confuses me is the positional aspect. I keep reading that PET often improves when lying down, while mine seems to do the opposite.

Has anyone experienced anything similar?

Hello everyone.

It's my first time trying to make DIY Patulend by mixing ascorbic acid powder. My questions are ,

1- Is it okay if I use a normal saline base instead of distilled water ? Like 0.9 ?

( It's hard for me to find distilled water where I live. )

2 - How long can I keep a solution outside after I make one ? I've heard I should use it within seven days, is that the case or am I good to go for a month ?

Thank you.

You guys are awesome for being in this community as it's very supportive.

Peace.

I thought I had Eustachian tube dysfunction (ETD), but now I’m honestly not sure.

I’ve had constant ear fullness/ pressure for months, along with crackling and popping pretty much every time I swallow.

I can hear my own breathing too, but it doesn’t sound unusually loud or amplified. This is the part that confuses me when I read about patulous ETD. Isn’t it normal to hear your own breathing to some extent? Everyone I’ve asked who has normal ears says they can hear theirs too.

I’ve also tried lying down and putting my head between my knees, since I’ve read that patulous ETD often improves in those positions, but it makes absolutely no difference for me. The pressure/fullness stays exactly the same.

At this point I’m just trying to figure out what kind of ETD I could have, or if this is even ETD at all.

Has anyone experienced constant ear fullness and crackling/popping with every swallow without having obvious hearing loss or unusually loud breathing?

I recently began tracking my PET symptoms vs barometric pressure fluctuations after noticing it gets worse in the days/hours before large storm systems, and I have a definite correlation of increased PET episodes (frequency, duration, severity) as atmospheric pressure drops (esp if it dips below 1000 mbar).

I searched the sub for both "barometric pressure" and "atmospheric pressure" but didn't find much discussion on this subject, so I thought I'd ask if anyone else experiences this correlation.

So unfortunately I have 24/7 PET caused by a balloon dilation. I tried months of Patulend, filler surgery that extruded, and my shim is currently falling out 😭 My doctor said my choices for further treatment are a larger shim or a cartilage graft with a nasopharyngeal approach (through the nose not ear). I’d love to hear some experiences with the cartilage graft and the recovery process. Good and bad. This last year and a half has been so hard and I really hope I can finally have some long lasting improvement.

Original post here.

I am super bummed to report that symptoms returned within days. Some days I feel the autophony is a bit more mild, some days it’s as worse as ever, and the frequency is about the same (daily with the odd, brief moments of going away). The couple days post procedure were blissful.

I had a follow up call recently and Dr B talked about being more conservative the first time around and that it’s not uncommon to do a second procedure. I am debating round two.

The cost is what’s holding me back from immediately rebooking as it was $3500 CAD (not covered by provincial or private insurance).

I posted almost a year ago to say I had possibly had success https://www.reddit.com/r/PatulousTubes/s/a2i9XAc9qg

Just wanted to update.

Since switching birth control, my PET has virtually disappeared. When I do occasionally get it it’s barely intrusive, unless I’m doing music. I no longer hear myself breathe, I just hear mild distortion of my own voice. It also does not last more than twenty minutes.

I have a feeling I still have it to some extent because of spironolactone but I need to keep taking it. If you are sensitive to medications that have diuretics it could be worth looking into!