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?
I have PET also, and it usually just comes at its worse when I am exercising. When I hear from wikipedia and any other medical website that the diagosis is weight gain and reduce exercise it makes me very frustrated because I am 10 pounds over weight and am trying to get back into shape. When I play basketball, I usually can block it out of my mind but when I exercise like run or go to the gym I get extrmely frustrated with the discomfort it brings when I breath, talk, or make a humming kind of sound. Ive heard some medicine online has helped but it doesnt seem that legit or credible. One is this kind of Chinese drink you can drink to possibly help the PET. Also ive heard of these ear drops from Santa Barbara, but they are very expensive and they are targeted for the more severe type. Also Canada is inventing something but it is in the trial stages (probly be 30 years before U.S. picks up on it). This whole thing sucks and I wish it would go away.
Elliot,
I read your blog re:patulous eustation tube PET but was not able to responde on the blog. I had it since May this year. I tried everything including snorting fine My ear specialist prescribed an estrogen spray (did not work) and some librium for my stress!!
The Ear foundation in Santa Barbara has a spray that finally worked for me within a week the beginning of December, I still get it sporadically (once a week) but gone with one spray. It costs $48+ shipping…worth every penny for the relief. I am not associated with them but am a believer and very thankful!
You can go to the website and read up http://www.earfdn.org You can also call…they are very informative.
Please try this as, I know what you are going through…email or call me with any questions 720.280.7486 (Colorado).
Good luck,
Bob L.
So I only get this when I am exercising and I found out that what causes this for me when I am exercising is the occasional movement of my jaw … So try exercising and keep your mouth open only to breath…. It works for me and I hope it will work for you too
I have the exact same thing/situation as you do! Oh it feels good to know I’m not the only one. Only difference is that I get it in my left ear. I have it right now in fact. I’m going to the doctor soon and I’ll be sure to write my update here.
Bob L,
Could you please provide your e-mail address? I would really like to get in contact with you about this nasal spray. I would greatly appreciate it.
Thanks,
Chris
Hi Elliot,
I’ve set up the website http://www.patulouseustachiantube.net following diagnosis last year (Ive had it for approx. 9 years). There is an e mail group and facebook group if you are interested. Surgery is intermittent with its results. There is this study in Canada with a clay that reduces vibration of the drum, the study ends July 2010.
There are lots of alternative therapies that can be tried that increase health generally. I’ve probably tried them all and it feels like chipping away at a real physiological problem, for some reason I have experienced atrophy in the left middle ear and I have no idea why…..
Information sharing seems to help me, if any one has any info particularly success stories, please let me know!
Thanks
G
Hello again,
I went to the doctor and described all my symptoms without mentioning that I think it’s patulous eustachian tube so he wouldn’t think I was crazy.
He didn’t seem to know what it was but said he wasn’t concerned. He is referring me to a specialist just to make sure it isn’t anything serious.
When I go to the specialist I plan to ask him if it could be PET since it’s rare and maybe it won’t come to mind.
Anyways I’ll update after the appointment (they haven’t called with the scheduled time yet) and hopefully it isn’t anything serious! Aaaaa!
initially when it started happening i never thought of it as a problem, i thought it’s normal and will go on it’s own but one day i seriously got irritated wile exercising and searched on internetand came to know about PET. i have stopped exercsing or doing anything which causes me to hyperventilate. i am thin and no matter how much i eat , i never saw the difference.
all my friends are going to learn swimming next month, i also want to but don’t whether it will worsen the situation. please give advice
Aaa still haven’t gotten a call from that Specialist. Although my symptoms sound exactly like those for PET I’m still really worried it’ll be something else more serious. Although it is annoying (especially after exercising) if I knew what it was, I’d be able to live with it (I think). I’ve forbidden myself from looking into it more on the internet to prevent more worrying. All I can do now is wait I suppose.
Easier said than done.
apoorva, if I have PET when I’m talking to the specialist I’ll try to remember to ask if swimming is ok (since the eustachian tube is left open I can’t see your concern). Hopefully that’s sooner rather than later!
When I play basketball, I usually can block it out of my mind but when I exercise like run or go to the gym I get extrmely frustrated with the discomfort it brings when I breath, talk, or make a humming kind of sound.
I’ve been suffering from Patulous Eustachian Tube (PET) for 2 years and feel everyone’s pain. I also heard my own heartbeat, my own breathing and my voice sounded as if I was underwater. It drove me crazy, but I wanted to share what I have finally found works for me and I hope it works for you too. I can’t tell you how relieved I am to finally find something gave me my life back.
After seeing 10 doctors – 2 chiros, 3 ENTs, 1 Neurosurgeon, 1 Neurologist, 1 Family Doctor, 1 Rheumatologist and 1 Maxillofacial Surgeon NO ONE could help me nor were they sympathetic. But through searching many forums I put together what everyone was saying about staying hydrated and did a bunch of other research to find out what would be most effective. So here’s my logic behind my simple recommendation…
1st Staying over hydrated helps- not just 8 glasses of water but 10-14 depending on your size, activity level, etc.
2nd Salt and soluble fiber helps to keep water in your system
3rd Warm to hot water is more easily absorbed by your body than cold water.
4th Drinking small sips of water throughout the day will strengthen the palette muscle, which holds up the Eustachian tube.
So… I buy chicken broth (obviously has salt in it already) Kroger’s Private Selection brand is the one I like the best. I then add 2 tsp of Metamucil (higher fiber than Benefiber) to 2 Cups of broth and I heat it up in the microwave for 1½ minutes and drink it first thing in the morning. I then continue to sip water throughout the day about 8 glasses for me. This forced me to use the restroom all night, but I use that as an opportunity to drink water, which I keep on my nightstand now.
The first day I drink 4 Cups of the chicken soup and drank so much water that my stomach hurt because I was so frustrated that I went a bit overboard. ? But PET went away 2 hours later. The second day I had drank water throughout the night and drank only 2 Cup of chicken broth and drank water all day but not to the point that it hurt and the PET came in the morning for bit then just went away. Since then I’ve figured out what works for me and have not had it all.
i have been diagnosed with having pet i refuse to accept it. i will continue to look for away to get well i am only 38 years old i cannot just let go of life noway!i wont let it kick me i will kick it! i will not claim this! i will continue to pray and believe that God in heaven is the divine physician and if he be for us what can be agianst us! may god bless,comfort and touch us all!
Hi Lori, I have had PET since I was in my 20’s…Im 55 yrs old now… just last yr I ordered the PatuLEND drops….although its not a cure, its helping me. I know what you are going through…God has helped me all these yrs to be able to cope… I pray for all of us with this disorder!
People with these symptoms should get a blood pressure monitor and monitor their blood pressure throughout the day. I had those same symptoms of PET when working out and lowering my head did work, but as soon as I straightened up it would return.
Long story short the culprit for this symptom was low blood pressure. It was around 110 over 64 when I got the symptoms. Raising my Systolic pressure to 120 before going to the gym by eating salted foods and waiting at least 4 hours after waking up before going to gym solved the problem.
So check your blood pressures! This could be a solution for you.
My experience is similar as the poster I often experienced around Middle School through out caused by strenuous? physical activities up until now out of HS for some bit. Always thought it was normal too and thought everyone got this feeling. Kind of an annoyance I guess. Just decided to research and find it as diagnosis which seems spot on, and it’s rare apparently? For me it usually happens when I sit around a few days and just decide to exercise all of a sudden, but it will go away after a minute or two of resting and drinking water. And I’ve noticed when I go into a regular exercise regimen its occurrence of hearing my voice is more rare. My only concern after reading up on patulous eustachian tube is whether if this condition can worsen?? As in.. the high altitude clogged ear hearing feeling not going away? Because I can see how that could cause some grief.. I know this is an old age article but figure I’d add to it
Also I’ll add I’ve always been quite lean as far a body physique more so as a kid, and sometimes its one ear or can be both sort of random I suppose.
So I’m not alone in this world with PET.Seeing few doctors I was thinking that something is wrong with me because answer was”I don not now what are you talking about”
Thanks for a Google now I’m in peace
I would like to add that it is wise to not use Q-tips to clean your ears. That pulls out the waxy substance we need for this problem. I too suffered with this disorder. I didn’t know water helped–I started drinking more the last few years and have noticed my ears were better. I used to go to the health food store and purchase saline nasal spray-take the cap off and squirt one natural vitamin E capsule in it–then shake and replace the cap-storing it in the fridge. Then when my ears started in, I would take my nasal spray and lay down in my bed with a pillow-but lay with your head down–not tilted up-squirt the solution in your right nostril and tilt your head to the right letting the solution drain into your right ear–do this several times-wait about 2 minutes–now do the other side tilting everything to the left–now put your head straight on the pillow and lay there without moving for 30 minutes. When you get up, your ears could be clear for several days or weeks. I was desperate for help after seeking physicians advise without any help many years ago. I finally called out to God, in the middle of the night, to please help me–He put this idea in my mind that night and it sustained me for many years. Now I do not suffer from it as much-just occasionally. I know what you folks are going through. If this helps anyone, it will have been worth my suffering to help.
Hello and God Bless you for taking the time to post the Vitamin E cure. I am planning to try it. Could you email me? I have a couple of specific questions.
Thanks
Jon
Hi
Has the Vitamine E solution worked? What is the dilution between Vitamine E vs saline?
Thank you for proving the possible aid!
please update us– anybody who’s tried this technique! any relief? thanks….
I’m a 42year old woman who does sports, running, swimming mainly. I’ve had this condition ever since my 20’s when I first seriously did sport. I have struggled with it for all this time on and off, one ear then the other, now both. I fit all the descriptions, fluctuating weight, low blood pressure. I went to an ENT twice in about 10 years, and always the same not very helpful procedure. I was sent to an audiologist to check my hearing. When that proved ok, I was not given much of a diagnosis, only prescribed nose drops to clear up any stuffiness. This did not help at all and I struggled on again for years. PET makes me irritable and short-fused! I feel like I am talking with a bucket over my head. Yes, I hear my own breathing all the time! I also hear my heartbeat when I lie down to sleep. I tend to avoid talking to people when both ears are “blocked” as I believe I start talking very softly, as my own voice is booming in my head. People struggle to hear me. Ironic isn’t it?
I found out about Patulend drops on the internet and ordered them and had them shipped all the way to South Africa where I live. I used them for a bit, with much hope for relief, but they just gave me bad hayfever. I sneezed all the time and had a very stuffy nose. I have also noticed, when I have a headcold, my problem vanishes until the cold is gone! So maybe that is the basis on which the Patulend works? Give you a congested nose to close the Eustachian tube?
I don’t use the drops any more, it was just too unpleasant to live with Patulous Eustachian Tube symptoms PLUS allergy symptoms. Sorry I sound so negative, but this condition seriously needs more research. We the sufferers go through misery and we really have to work hard at pulling ourselves together every day, because of it.
I just read the drinking lots of fluids tip and I will try that and see if it helps. Good luck all the people who live with PET!
I’m 14 and I’m told I have Eustachian tube dysfunction, but i think I have this ^pet – because I get those exact symptoms too, and have done for about 5 years. It drives me bonkers it is the most annoying thign on Earth and no-one can understand what it sounds or feels like :@ No-one seems to mention this but hold my nose and breath IN, not out, and then it goes normal and seems to suck the air into my ear… god it irritates me so much and that’s what I always do, and I use a spray which makes it better too, but still, they pop so often and when I speak. the doctor says that it’ll go back to normal as I grow but it hasn’t changed for this long and I’m really impatient waiting because it is so bloody annoying!
This must not be that rare if all of us feel this way! At this point I’m sure that I have patulous eustachian tube, it’s extremely annoying and I am talking less and less at school because of it. I am 17 and a little underweight, and after reading these posts and some other internet research I have decided to gain some weight and drink lots more water. I went to a doctor and chiropractor for PET (before I knew what it was) and the doctor prescribed allergy medication while the chiropractor told me it is a virus. Neither of their treatments had any effect. I’ve had all the symptoms- gradually getting worse, for around a year now. I’m relieved that I am not the only one with this “rare” disorder. I’ll try the water and weight gain and tell how it works out for me.
I am a 34 year old woman and I beleive I have been suffering from {PET} for about 3 years. I have all of the symptoms described, when I first wake up in the morning and I am still lying in bed I feel great, that is until I stand up and start walking around then in my left ear I start hearing myself breath , and I also hear myself talk very loud which can be very annoying since I have a job where I constantly have to be on the phone =( . When I am lying down the symptoms dissapear. I have been to several E.N.T also have had several test done. I am going to a different doctor tomorrow to see what he has to say about my symptoms.Heeeellp! I am releived to know that I am not the only person in the world to have these symptoms.
It’s a relief to finally hear of others who are suffering from this hellish condition, PET. My symptoms are essentially identical to those described above by others and started ca. 18-24 months ago. Until now, I never associated the two but about this same time I lost a lot of weight (20-30lbs.)as part of a program to deal with congestive heart failure. My maintenance weight now is ca. 190 lbs; I am 6′ 2″. When it started out, I thought is was an allergy condition and went through the usual battery of common allergens and got no positives. I have tried most of the OTC and Rx allergy meds. both oral and nasal and nothing has helped. I have had 3 CT scans, 2 of my sinuses and one of my brain and all 3 appeared completely normal. The problem has completely screwed up my equilibrium. The ONLY thing that I have found that gives me temporary relief is to lie down and sleep.Thank goodness I have the luxury of being able to do that but as soon as I sit up or stand up, within 15-20 minutes the PET symptoms are back and remain the rest of the day. Both ears are affected, either one at a time or both together. The symptoms have caused further lack of appetite, especially for a heavy evening meal. I recently had an appointment with a ENT specialist at Mayo Clinic in Jacksonville, FL and he mentioned PET as a possibility for my condition. In light of what I’ve read here, I am anxious for my follow-up appointment with him. I can certainly relate to the frustration and depression that others have so aptly described!!
I had never had issues with this up until the age of 27 where I started getting it during and for a short period after weight lifting. It is EXTREMELY annoying I just cant talk to anyone while my own voice is amplified in my ears. For those who cannot understand what it’s like – it’s like talking to someone on skype who is not using a headset and has the volume too high so you can hear yourself speak. Your focus shifts from the conversation to your own voice echoing in your ears.
I am fortunate that I only get this during intense exercise. I will try some of the suggestions including increased water intake, increasing blood pressure with salt, and reduced use of cottonbuds.
This forum was very helpful thanks to all those who posted. I have subscribed to further follow up comments so if anyone has any further suggestions please let us know!
Hey Josh! Mine started at 27 as well (about 4 months ago), and also only during and shortly after weight lifting. I love the Skype analogy; it describes the situation really well.
My symptoms are now fairly constant. Have you noticed any changes? Do you do declined bench press? I’m starting to think that the increased pressure from being upside down might have been a contributory factor.
I’m currently upping my salt intake and gaining fat. I was underweight. I started noticing problems when I was sucking weight in preparation for a distance run. Seemed like a good idea at the time. Did you notice PET symptoms in conjunction with weight loss as well? Have you experienced weight fluctuations? How are you doing? I have subscribed to further follow up comments as well. I’m looking forward to hearing your good news.
Mine started a couple months ago, I just now got around to googling it and realizing what it was. Previously I just thought it was a minor sinus infection or something of the like. I am 5 months pregnant which I understand is probably causing it, though I’ve gained 15# which should help it. Doesn’t make any sense. I’m hoping it’ll cease after I give birth, I lift heavy weights and sprint a couple times a week, it’s frustrating to hear that’s not a good idea. I may have to try dialing down my workouts, which really sucks… Has anyone had luck with less intense workouts helping? I don’t want to quit training if I don’t have to.
I have been suffering for about ten years not knowing what was wrong with me and only get worse as time passes. For the last ten years I have seen at least ten different specialist, mainly ear, nose & throat. Finally, last year my doctor in Tampa, FL did some simple tests and told me he suspects PET. He wasn’t able to help me with my condition but did mention Dr. Poe in Boston. I did a lot of research on Dr. Poe and apparently he is the master with PET and offers a few procedures. Unfortunately, only a few doctors know how to do the procedure. In the meantime, to get temporary relief I ordered the drops from the ear institute in Santa Barbara, CA. I have PET in both ears but my right ear is so severe. The nasal drops gave me little relief. I was on the waiting list to see Dr. Poe for the procedure, and while waiting I did research and found the Silverstein Institute in Sarasota, FL, and the doctor at the Institute specializes in PET. I also had a lot of symptoms of Superior Canal Dehisence, which is even more rare than PET and very hard to diagnose. After various tests and three cat scans, and with all of my symptoms, PET was confirmed and Superior Canal Dehiscence was ruled out. I have PET in both ears, mild on the left, severe on the right. Both of these conditions have similar symptoms. The Silverstein Institute injected foam filler in my eustachian tube and I had immediate relief and most of my symptoms were gone, but unfortunately it only lasts two weeks. I am scheduled next month to get the medical procedure in Sarasota. After the procedure I will have to wear a tube in my ear for the rest of my life and will have to give up water activities. But because my symptoms are so severe and have only gotten worse as I age, I am willing to live with the tube and give up water activities. I know how annoying this condition is and truly understand what others are going through.
If anyone out there going through this has any questions, I am happy to help.
In the meantime, I am counting down to my surgery in a month. It is an outpatient procedure and nothing major.
Hi Lisa
Your story is very similar to mine. I too was diagnosed with Superior Canal Dehiscence but recently ruled out given negative VEMP and VNG testing. PET is the only explanation but no current treatment for PET (i.e. estrogen drops or Patchulend drops) have helped. Can you share more info regarding the surgery?
[email protected]
Thank you
Did you get the surgery at Silverstein Institute? I am seeing them for PET too and was just diagnosed. I was pregnant and had a sinus infection and got this. So awful! How was surgery? Are you better? Thanks!! Ashlee
Hi Ashlee, yes I did get the surgery from Dr. Silverstein. He used bone wax and then inserted a plastic blue tube In my eustachian tube and after I woke up from the surgery I had instant relief, about 60% improvement, which made a big difference. I don’t know if there is 100% relief for this condition. I was so much better than before the surgery. The downside was I got a lot of wax buildup so I just had to see the dr. on a regular basis for a cleaning. Ear wax tends to stick to the tube and stick. After two years I started seeing a doctor closer to home in Tampa at the Hearing and Balance Center because I still had a problem with hearing loss, dizziness and a 24 hour a day humming in my right ear (the PET ear). When the new doctor looked in my ear he said my eardrum has a hole from the tube and will continue to get bigger and said the tube has to come out. NOOOO, I couldn’t stand to hear that after all the relief it gave me. He said either he removes the tube now or in a few months but having a hole in the eardrum is not a good thing so I told the dr. to go ahead and remove it right then and there and he did and I instantly had all of my symptoms back 100% and now I live in misery every day. I have a severe case of PET. The dr. in Tampa has offered to redo the surgery. He’s going to use cartilage to fix my eardrum then insert the plastic tube back in. Dr. Poe in Boston (I think he’s the best dr. for PET) does a few different procedures. If you call his office they can send you information on what he does. One option and I think this is the best because you have no foreign object in your ear, is he builds up your Eustachian tube with cartilage. This is the procedure I want and Dr. Poe has a waitlist for 1.5 years. Well there’s no way I can wait that long with my symptoms. There’s another dr. at Yale Medical that does this procedure and he’s apparently another top notch dr. like Poe, so I think I’m going to proceed and get it done by the dr. at Yale because I cannot wait too much longer. I want a more permanent solution and found that the plastic tube needed maintenance because of the wax buildup. Keep in mind there are not a lot of doctors that do surgery for PET. It’s specialized and even though a doctor may know about PET they most likely don’t perform surgery or treat it. I’m going to follow up with my new dr. in Tampa one last time before I make a final decision, but either way I’m getting surgery for this again this year because it is miserable to live with. Prior to surgery I did order ear drops for PET from a dr. in I think in Santa Barbara, CA (I could find out if you want the exact location) and the drops did nothing for me. Even putting my head in between my knees did nothing. If the tube wasn’t enlarging my eardrum I would have kept it in my ear because it gave me good relief despite the wax buildup because it provided good relief. Let me know what the dr. plans on doing for your. I wonder if Silverstein is doing any new procedures for this. I just hate having to fly out of state and incur the out-of-pocket cost if I could get surgery in FL.
Ashley, thanks for your question and I’m here to answer any questions you have. I’m happy to discuss on the phone if you like. I know how miserable it is living with PET. Silverstein actually put a camera inside my Eustachian tube and took photos to confirm my tube was open.
Best,
Lisa