(Patulous Eustacian tube, which this correspondent abbreviates as PET, is a condition in which the Eustachian tube stays open most of the time. The Eustachian tube is a part muscular, part cartilaginous, part mucosal tube which extends from the middle ear to the roof of the throat. It remains closed most of the time and opens only occasionally, throughout the day, in order to allow the air pressure in the middle ear to equalize with the ambient air pressure. If the Eustachian tube remains open for too great a period of time, one will have the unpleasant sensation that one's voice is too loud, distorted, or has an echo-- this symptom is called "autophony."
I have chosen to reprint nearly all of this correspondent's very long letter because it highlights the frustration associated with the condition itself, as well as the frustration of having to deal with a medical community that is largely ignorant of this condition.)
Q: I have been suffering from patulous ET for 2 years now and have been severely frustrated by doctors who don't seem to know about PET or don't seem to care. I have seen 11 doctors including 3 ENTs, a peridontist, an allergy specialist, a cranial osteopath, a pyschotherapist, 5 family doctors. It took 6 months and 2 ENTs to determine that my problem was that my eustachian tube didn't close properly, but they couldn't offer me any treatment that worked and then I took it upon myself to find out more info using the internet as my primary tool. I have met a few PET sufferers who have all tried different treatments and some have been successful, others not. I have discovered that even though we all have PET, we don't necessarily have the same causes or exact symptoms.
First symptom: popping sensation upon swallowing and talking in my right ear. Distortion when I talked. This gradually got worse so I went to the first doctor who said I had fluid in my ears and told me to take decongestants - didn't work. Went back to another doctor, said the same thing and gave me more decongestents, didn't work; went back to my own family doctor who said I had nothing wrong with my ear and it was all in my mind.
At this point I began to get depressed. I demanded to see an ENT - he said he had no idea, didn't mention e-tube or anything and told me there was nothing he could do. Changed family doctors, she sent me to a 2nd ENT who finally told me my problem was patulous ET. Went to see an allergy specialist who said he couldn't find anything (the ENT put me on Nasacort spray as I was having post nasal drip etc)...
After six months the condition took a turn for the worse - my ear began to pop when I was travelling (train, bus etc) and the autophony got much worse. I found that if I talked too much my ear would pop and stay open for hours and even if I stopped talking it could take hours for the tube to close again. I met some folks on the web and through NORD who suffered from PET and they all told me about their situations. One person has had laser acupuncture in NY and then took the nasal drop trial in Santa Barbara (the nasal drop is supposed to irritate the tissue and make it swell up thus forcing the tube to close) - the treatment has worked for her but out of 10 people I talked to, the nose drop has only given 3 people relief so there is no guarantee there). Another person has had catheters inserted into both her e-tubes and this has given her relief (a doctor in LA performs this expensive procedure). Another person advocated regularly lying down 4 times a day. Most PET sufferers say that lying down or putting their heads between their knees closes their tubes, unfortunately I seem to be the only one this DOESN'T help - in fact it can make my ears pop.
Today my PET has taken another turn for the worse, in that my e-tube opens now under the slightest duress. If I swallow involuntarily, if I sneeze, if I drink anything, if I burp even slightly, lie down etc and takes forever to close. I spend a lot of my time alone so I don't have to talk (talking is the worst trigger for me), I am a virtual recluse now, I avoid talking and social situations like the plague, I avoid travelling (except the plane seems to be fine, I guess because it is pressurized), and of course my job creates havoc for me as I have to talk a lot so I have gone to working part-time now. I have learned to swallow in a way to avoid opening the tube up. Basically this thing is controlling my whole life. When I can't avoid talking I wear an ear plug to help muffle the autophony, which helps but my main problem now is that my left ear is now becoming affected. So what to do? I can't plug both ears then I won't be able to hear.
I am trying to figure out WHY I have this problem. I also have post nasal drip and tinnitus - both started at around the same time as PET. I find that I don't have any mucous in my nose at all anymore, I don't sneeze more than I should so it doesn't feel like an allergy. The only time I get relief is when I have a cold...
Here is my theory: I think that somehow my normal mucous production has somehow halted and therefore the e-tube is not properly lubricated so cannot stay closed. I find the ONLY thing that helps the tube to close is inhaling finely ground pepper which irritates the membranes and swells the tube shut OR creates enough moisture to close the tube up. This is only a temporary measure but it's all I have at the moment.
I am 30 years old, and currently pregnant too so it's getting worse, as I expected, but after I give birth I am going to California to take part in the nose drop trial and if that doesn't work I will then get the catheters inserted into my tube. I have heard from all the PET sufferers that the ventilation tube in the ear drum just does not work.
My question to you is, what do you think is causing my PET? Some people think PET is caused by poor blood circulation to the skull - not enough blood pressure to keep the tubes closed hence people getting relief from lying down etc; TMJ; lack of proper mucous lubrication. I have ruled the first 2 out and am gunning for number 3. What do you think? If so, is there anything I can do to get my mucous production back up to where it should be? Is it a hormonal or allergy problem?
Sorry to ramble on but I thought you should hear my history first. Thanks you very much for helping.
A: Your letter served to remind me yet again that I need to put even more info up on my site regarding patulous ET. But let me respond to your questions.
There has been a lot of speculation as to cause. There definitely seems to be an association between pregnancy and patulous ET. One possible explanation for the "pregnancy link" has to do with the general softening of certain connective tissues that occurs during pregnancy. This is a direct result of the hormonal shifts of pregnancy. The Eustachian tube has a partial "skeleton" made up of cartilage; perhaps this, too, softens during pregnancy, causing the ET to sag open and remain so. But this is speculation.
There is also a clear association with weight loss. Even weight losses as trivial as 10 pounds or less (5 kg) can cause patulous ET. Here's the speculation with regard to weight loss: there is some fat surrounding the ET; perhaps this fat helps to keep the ET in its usual (closed) condition. Lose the fat, and the ET flops open.
If there is any relationship with allergy, it is an inverse one. I have heard some people state that their patulous ET routinely improved during an allergy season. This is an easy thing to understand. Allergy causes mucosal edema (swelling of the tissues of the nose and throat) and this will tend to close the opening of the Eustachian tube, which is immediately behind the nasal cavity, high in the throat. Many of the maneuvers aimed at the treatment of patulous ET are designed to increase mucosal edema.
PET is not a matter of poor blood circulation to the head. The head does not lack for blood circulation. However, there is a normal redistribution of blood which occurs when our posture changes, owing to gravitational effects on the blood. If you are on your feet for long periods of time, blood tends to pool in the legs and feet; when you lie down, some of that blood "returns" to the head. (The same thing occurs with lymphatic fluid.) Incidentally, many people note that they are unable to breathe through their nose when they lie down, owing to swelling of nasal tissues because of venous congestion. So, the recumbent position helps in patulous ET thanks to swelling (venous congestion) of the tissues lining and surrounding the ET.
For more information on patulous ET, including a discussion of the various treatment options, you may want to look at the following link:
PLEASE READ AND ABIDE BY the disclaimer at the top of the page on this link! This material is intended for other physicians, not patients. The material on patulous ET is about 2/3 of the way down the page. Print this out and share it with your doctors-- you will be doing a great service to any other patients they see with patulous ET (which is rarely diagnosed by non-ENTs.)