I think I have Patulous Eustachian tube

There’s a rare physical disorder called Patulous Eustachian tube, and I think I have it.

I sometimes hear my own breathing in right ear– very loudly– along with my voice, when I speak.

Here’s the Wikipedia article: http://en.wikipedia.org/wiki/Patulous_Eustachian_tube

It describes my symptoms exactly.

The symptoms are intermittent, but I’m experiencing them right now. When it occurs, I hear my own breathing and voice directly in my ear.

It feels and sounds drier than normal congestion. All breaths echo in my eardrum, and they don’t seem muffled much. And external noises, including the voices of other people, are not muffled. Furthermore, there is no clogged feeling– although there is a “fullness” feeling in the ear– and no sinus pressure. No pain, either. And it’s only in my right ear, not my left.

Perhaps my case may not be too severe, which is why I never thought to Google it until now. And I seem to function okay, despite having the problem. Fortunately, it doesn’t happen too often. Most of the time, though, it’s caused by exercise. It is probably one of the major reasons why I don’t exercise more, though. And it is probably one of the reasons why I hated PE and I don’t like playing most sports.

So don’t get me wrong: it is a major annoyance, and I would like to take action to get rid of it.

I thought it was more common. In fact, I thought most people experience it. But Wikipedia claims it’s “rare.” Wikipedia says it’s even “frequently misdiagnosed” due to the “rarity of the disorder.”

Supposedly, weight loss could be a cause of the disorder because “fatty tissues hold the tube closed most of the time in healthy individuals.” I used to be slightly overweight. Because I didn’t like being fat, and was often made fun of due to my slight obesity, I decided to eat less. Once I started eating less, I discovered I felt a lot better when I ate less. I overcompensated. Now I’m underweight. I eat when I’m hungry, but my limit seems to be pretty stiff. After a certain point, I simply can’t eat any more. I’d get sick and have indigestion if I eat too much. But, apparently, I have to somehow eat more in order to gain weight.

One way to relieve symptoms, according to Wikipedia, is to place my head between my knees. I’d never heard of that before. I tried it just now. And it worked. My ear felt clear and I didn’t hear my breathing or voice. But it was temporary. Once I straighten up, the symptoms shortly return. I wonder why this treatment method even works at all.

“Depending on the underlying cause of the disorder, the individual may need to remove caffeine from their diet, reduce exercise, or gain weight.” It does seem that exercise aggravates my condition. But I already don’t exercise much, so that’s not too much of an option. Gaining weight might be possible, but it might require significant effort. Eating fattening foods just doesn’t sound very appealing to me anymore. And I’d be concerned about the negative effects of cholesterol.

Do you have any hearing disorders?

Can you relate to my experience of having a “full” feeling in one ear, and hearing your own breathing and voice?

55 Responses to “I think I have Patulous Eustachian tube”

  1. c says:

    Wow, I can’t believe so many of us deal with the same annoying problem. Mine shows up mostly during exercise, especially running. Sometimes it lasts longer than a day, other times just a few hours. I can’t stand to talk when it’s acting up and constantly ask if I’m yelling because I can’t tell what my volume is. When I mention it to doctors they just look at me like I’m crazy. I’ll try the water. I was just searching google before a visit to the doctor to see if there was a name for this. Maybe this is why I love salt so much?

  2. Tim says:

    My wife suffered from PET for over 2 years and it was to the point that here quality of life was non-existent (she could hear every heartbeat and sounded like she was talking inside a bucket). In May 2012 we had surgery in Boston with Dr. Dennis Poe. The results were almost immediate. It is now October 2012 and she has only had 2-3 mild attacks. As a spouse of someone who watched their wife suffer daily to the point that it was the only thing she could think about, I just wanted to send out a post to let poeple know that there is help available and that if you have this terrible disease you must seek out Dr. Dennis Poe at Childrens Hosiptal Boston. There are not guarantee’s but he has changed by wife’s life…

    • Bob says:

      Hey Tim, I am intrigued by your story about the surgery from Dr. Dennis Poe. I do not have the same symptoms as others with PET, but my otolaryngologist told me that I am suffering from it nonetheless. My condition developed after perforating my right ear drum. Whenever I swallow, I experience a crackling in my right ear, which is said to be the movement of my eustachian tube, as it is abnormally open thanks to PET. I used to exercise, and now I can’t, which frustrates me to no end. Much like your wife, I spend a good majority of my day thinking about PET, especially how it limits me. My otolaryngologist was the one who gave me the name of Dr. Poe, but I was wondering if you could elaborate on the procedure, what it involved, and how things have changed for your wife since? Thanks in advance, I appreciate it.

    • Jenny says:

      Thanks Tim I am suffering from this condition I fear now too… That gives me some hope as I can only think about this and unable to function for over 3 mos now after having the 2013 Flu it all started for me.
      I have a small toddler to raise and my poor husband has to care for me and fill in as mummy since I feel completely disabled from this condition.
      Much appreciate it

  3. K says:

    I have this. I have had it since pregnancy with my first child. During my pregnancy, it developed because of hormonal changes. Since then, it has come and gone for years at a time. But since I have lost a lot of weight, it’s come back with a vengance. I also find that it increases with exercise and humidity.

    I don’t have physical symptoms that disturb me, so I put up with it. You can also get rid of it by plugging your nose and breathing in. It will stay away until you swallow. You can get moments of relief by doing it this way.

    I tend to be prone to ear infections because of the problem. I had strep throat that resulted in a severe ear infection that broke the ear drum in that ear. This is the only thing I have to be aware of. I also find that when I get a cold my congestion is often one sided, being signficantly less on the side where I have the problem. I think this may be because there is better drainage? But, I think this is also what causes the ear infections. It’s a win-loose.

  4. Mike says:

    Hi! My PET (self-diagnosed: physician that I attended doesn’t even know the word “autophony”) developed after heavy runny nose, in September 2012. After I gave up living with it (lasted for about 8 hours each day), I went to an ENT doctor which made two suggestions – eustachitis or sensorineural hearing loss. None of the two was confirmed after seeing my audiogram. He referred me to a neurologist. The neurologist too didn’t know what autophony means and based on my complaints prescribed me sedatives (Phenibutum, in particular). I was really surprized with his decision, but agreed. I took 1 pill before night and the next day I had almost no symptoms! After taking the first pill 1 month has lapsed, and almost no symptoms to compare with the beginning (sensation of liquid in ear, the ear was itching a lot, half day or even full day of PET sensation – now it can last for not more than 15 minutes).

    I noticed that this sensation pronounces after walking in a cold and everything is ok when in a warm room. Maybe it is connected with nose.

    Perhaps the reversal of my symptoms is connected with physiological cure (self cure) of my PET (PET or eustachitis?), and the pills and the reversal have just matched in time… hence it can be even eustachitis and my ENT doctor made a mistake, since I read that PET doesn’t cure fast or doesn’t cure at all – it cures only after treatment.

    Soon I will stop taking the sedative, and will try not to forget to post the results.

  5. Allie says:

    I am so glad to have found this post. I have seen two doctors about this issue, a general MD and an ENT, neither said they could find anything really wrong. One gave me something for seasonal allergies, the other game me steroid nose spray. Neither helped.

    I find my symptoms worst when I am exercising and breathing heavily (running or hiking) and whenever I have caffeine. I almost always experience it in both ears. Sometimes I also experience pain inside my ear.

    I’m not sure how mine began but it have been experiencing it for years and the people around me tend to think I am exaggerating and don’t understand the kind of discomfort I experience on a regular basis because of this condition.

    Thanks again for this post. Equipped with your insights and those of the other comments, maybe I can finally take the steps to get the relief I have been looking for.

  6. liss says:

    Thank you for this post! Makes me feel less alone in facing this problem.

  7. Olivia says:

    I am sure this is my problem. It happened only occasionally years ago, where I’d get a crackling sound in my right ear then it was if the membrane between my outer and inner ear opened (painless) and I could hear my breathing, my voice sounded very loud and I found if difficult to hear when others were talking. It seems to be worse with this pregnancy.
    I have been plagued with ear problems from infancy, with middle ear infections resulting in a mild hearing loss and continual ear infections. I visited a ENT at age 20 because I had a crackling sound in my ears when I tried to clear my ears (which is the same action as swallowing, but I can do without blowing my nose or swallowing). He said there was nothing wrong and basically I was making it up. A few years later after a terrible flu and ear infection my left ear drum burst. This resulted in temporary severe vertigo and hearing loss.

    But oddly it’s the right ear that has the symptoms described by this condition. I have avoided seeing another ENT since being told I was making up my symptoms but perhaps now that I have some information on this condition I can try again, more confident that it is something that can be treated. Good to know that I’m not the only one!

  8. Anna says:

    I am so pleased to have found this post. I have been suffering from these symptoms for 10 years intermittently now (I am 30yo), and in the last 6 months it has got worse – now a daily occurrence for up to 6hrs at a time. Glad to know it has got a name (if that is indeed what it is). My symoms are provoked by exercise and oddly hunger?? I am 6 mths pregnant, which likely explains the recent aggravation. I also experience metallic taste in my mouth when my ears are blocked – does anyone else notice this? I have seen many doctors about it and have been told it might be iron deficiency, acid reflux (????), and congestion. Anyway I am keen to try the Vitamin A solution, other than that it seems I am stuck with this until a definitive cure is found!

  9. MTL says:

    hi all, would like to share with you how i cure myself after 2 yrs with PET. My theory is that due to poor blood circulation and also not balanced diet which cause PET. Thus , to get back to normal, we must first ensure we have good nutrients and good blood circulation For the diet, trust you are able to find and for the blood circulation, i am using infrared light therapy for my left neck area + ear massage. For about 2 months now, my autophony reduced and also my own breathing sound.

    yoga exercise eg legs on the wall before bedtime for at least 10 min also helps apart from the infrared….

    what i hv done is all focus to get my body to heal by itself…. gain weight seems a must but to ensure good blood circulation is also very important.

    i will keep on doing this , hopefully, though might not totally back to normal but at least i could live a little better day after day….

    don’t give up,, pls drop me an email if you want to know more about the light therapy and the ear massage,,, i am glad to share my experience.

  10. Daniel says:

    I’m pretty sure I have this as well! The crackling noises and breathing comes and goes in my left ear. From the above posts, seems exercise, weight variations and coffee (caffeine) can cause PET. I agree. The post about the temperature variation (walking from a cold outside to a warm inside) is noteworthy as well.
    To me, this makes sense as the fat surrounding/supporting the tube may change in size/shape and cause realignment because of such aforementioned activities.
    Glad to know others have it and treatment is possible.

  11. Martin says:

    yes this is a personal nightmare, ent mainly clueless, and no obviose cure, what I do to get relief is to sniff back quite hard and pull on my ear at the same time this produces a loud pop and the autophony has gone, it does return on a daily basis, this is not recommended for the faint but when desperate it works for me,

  12. Peter says:

    PET may be caused by anxiety. See if the following works. Take GABA (500mg) (you can find it in any vitamin/supplement store) three times a day for about two weeks, and make sure you take absolutely no caffeine (no coffee, black tea, green tea, or chocolate containing caffeine, etc.)

  13. Paul says:

    I am a 53 year old male and I am experiencing PET for the first time. Specifically, autophony in the right ear only. The autophony began earlier this year, several weeks after I had one of the worst colds in my life. Not sure if there is a connection there but the timing is worth noting. However, in my case, I am convinced that there is a connection between autophony and caffeine, and possibly stress/anxiety. I used to be a green tea drinker (several cups per day) and as soon as I switched to decaf the occurrences diminished significantly. Regarding the stress/anxiety factor, I have grown to hate my job and the autophony almost always begins to occur at 3:00 to 4:00 in the afternoon, which is about the time that I have had enough of the office chaos. To prove this theory, I was recently out of town for a week on business and consumed no caffeine. The combination of no caffeine and being away from the office resulted in absolutely no autophony issues for the entire week. Although quitting my job is not a current option, quitting caffeine and finding ways to better deal with stress/anxiety is, so that is the route I am pursuing. I wish you all success in eliminating PET from your lives as I now appreciate how annoying it is.

  14. Jam says:

    It’s a relief to finally hear of others who are suffering from this like me thank GOD no one used to take me serious and i went through all comments and came to knw that there is no treatment :( please if someone have any treatment message me
    thanks in advance, i am suffering it for more than atleast 10 years i am 24 now

    • Lisa says:

      I have a very bad case of PET and whoever says it doesn’t get worse in time is very wrong. I am living proof. I have gotten much worse over the years as I’ve aged. I’ve been living with PET for 15 years. I spent 10 years going from one ENT doctor to another and each doctor basically did the same thing, looked inside my ear and said everything looks normal. Finally, after 10 years an ENT diagnosed me with PET after I told him my symptoms and doing simple breathing tests in his office. It was again confirmed by another ENT doctor with a camera and he took photos of my open Eustachian tube. He did surgery and used bone wax and a plastic tube and I got instant relief, not 100% relief but enough to make a difference. Unfortunately, after two years my eardrum was getting bigger and bigger and my new doctor had to remove everything. So now it has to be redone but he wants to use ear cartilage instead of bone wax and add the tube. As soon as he removed the tube my symptoms immediately were back. There are different surgeries out there that won’t correct the problem but will provide relief. In all of my research and in my opinion, Dr. Poe in Boston seems to have the most knowledge about PET. I called his office a few weeks ago to check his availability for PET surgery and the wait is 1.5 years for adults. He would be my first choice but I don’t think I can wait 1.5 years. The surgery that I had was well worth it but again my case is quite extreme. When I was younger it wasn’t nearly as bad as it is now. I recommend surgery for relief.


  15. Patty says:

    I was also glad to come across this blog. I have been experiencing ear issues for many years. For almost the last year, have had these same symptoms but have been diagnosed with several issues. I am not sure what to think and have seen 3 different specialist now. The muffling, pinging, the thunder noise and yes, hear myself talk is all insane! I have had antibiotics and steroids. To take the steroids have helped ALOT! But, it is only temporary because the doctors will not prescribe them for very long. I am not completely sure that I have PET, but it sure sounds like it. At this point, am very confused. I have looked every question I can think of to figure out what is going on. I have spent literally hundreds of dollars trying to get a resolution. I have been told that I have deviated septum, dysfunctional Eustachian tube and now a diagnosis of a damaged nerve. So, which is it? All of them? So, if I have PET, I did not read anywhere that steroids help it, but, it does help a damaged nerve. I am at a wits end..it drives me crazy. The last ENT suggested a hearing aid but I am 49 and feel that their must be another way to resolve this issue. I guess if anything, it helps to vent to others who are experiencing this issue. If any thoughts, please reply.

  16. Meg says:

    Same issues created massive panic in me for 4 months ask was having nearly daily episodes. Symptoms were: Echoing in my right ear, ear felt very OPEN (no pain), sounds (especially high pitched sounds) seemed to be out of “tune”, felt like a bucket in my head, heard my chewing loudly, etc. episodes lasted between half an hour to half a day and were not triggered by anything as best as I could tell.

    Three ENTs couldn’t help me and were only prescribing lots of allergy medications, decongestants and steroids. I have been a life long allergy sufferer and have had severe sinus congestion (including sinus surgery). However, the ear issue was unrelated to allergy symptoms or severity. One even had the “phantom limb” talk with me and told me to get my anxiety treated.

    I STOPPED HAVING EPISODES OF ECHOING AS SOON AS I STOPPED ALL DECONGESTANTS, STEROIDS AND ALLERGY MEFICATIONS. Now I just get allergy shots and deal with the allergy symptoms, which I would much rather have than the echoing ear.

    My theory is that the medications dried out my Eustachian tube to the point that it couldn’t close which caused the PET and all the symptoms .

    I hope this helps someone. When I went through this, I was desperate and no doctor could help me. It stopped entirely!! I hope it gets better for those of you still struggling!

  17. Bryan Whitehead says:

    I’ve had this on and off a bit. Vitamin D caused mine indirectly; the vitamin D was using up magnesium which caused a deficiency. The magnesium deficiency then caused reflux, PET, sore muscles, and some other minor joint issues. I now take a number of types of magnesium on rotation at recommended daily values or less (malate not included – I had severe problems with that for some reason).

    Things that didn’t help or make any difference for me include: weight loss (10kg), caffeine (up to 3 normal black tea/day), water intake, diet, alcohol, and a variety of prescription sprays, elixirs, salves, etc..

    I recommend anyone with this issue to try magnesium supplements if they are not finding another solution and report back if it helps.

  18. GKB says:

    I have PET for 6 mths already. what helps is when I rinse my nose (I use neilmed). I place the flush on the opposite nostril from the ear (my left ear is affected and I flush the saline solution through the right nostril). after every flush, I will take a moderate puff out via my nostrils (this dispels some of the fluid flushed in but I believe also enlarge the eustachian tube and when it retracts, it draws some of the fluid in and this sealing it temporarily). this is a short term relief though as the PET will come back even few hours.

  19. Wow this forum is a real discovery!!!! These and those and in fact all that everybody talks is what I’ve feeling all these years, I cant remember since when all begun. I am peruvian, I live in Peru and my story is so similar to yours (excuse my english please!). The only difference is that i have learned to live with it without stress or drama.I am a 59 years grandmother now and can’t remember one day without problems in the ear. From strong earaches, dizziness, unsteadiness and today this bothersome symptom. But I take a lot of patience and accept the jokes when my family see me putting my head upside down all the time. Even my grandchildren imitate me and this gives me a good laugh. What can I do! We have to take the problems as traveling companions. So my next step is going to increase the water I drink. I must say I NEVER drink water! Yes I know this is very bad, but I hate water! So I am going to begin this new routine. Little by little. And I’ll tell you how It went. Thanks to all!

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