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Iyouboushi On July - 12 - 2013

It has taken me a long time to write this all up but I finally felt the need to.  I suffer from an ear problem called Patulous Eustachian Tube (or PET).

Before you can really understand what PET is, you need to know a little about how the human ear works. To do a quick summary/refresher, there’s three parts to your ear: outer, middle and inner.  The outer ear is the part we see/can get to with a Q-tip. The ear drum sits at the end of the outer ear and separates it from the middle ear.  The middle ear has the three tiny bones and the Eustachian tube. The inner ear is where the vibrations from the middle ear bones are converted into the sounds we recognize.  The Eustachian tube is a very tiny tube that links the nasopharynx to the middle ear. It is normally closed but opens periodically to equalize pressure in the middle ear.  It has to do this to prevent damage from pressure changes.  If the Eustachian Tube doesn’t open, it creates a negative pressure which can draw fluid out of surrounding cells which can lead to hearing loss and infection.

If you’ve ever had an ear infection that was full of fluid it is most likely because your Eustachian Tube wasn’t opening properly—due to an infection, a cold, blockage, whatever.  Patients who have Patulous Eustachian Tube suffer from the opposite problem of this. In PET, the Eustachian Tube doesn’t close properly.  When this occurs, the patient experiences autophony, the hearing of self-generated sounds. These sounds, such as one’s own breathing, voice, and heartbeat, vibrate directly onto the ear drum and can create a “bucket on the head” effect.  Often these sounds can be louder than the sounds outside the body. As you may imagine, this makes it very difficult to hold conversations or enjoy simple things (like music).

The condition is pretty rare—to a point where some doctors don’t even know about it or bother to check for it—and seems to be completely random. That is to say it can come and go at pretty much any time in your life and isn’t genetic like some conditions. Because of this it’s hard for doctors to really diagnose it properly.  Often times we’re diagnosed with Eustachian Tube Dysfunction and told to take decongestants or with allergies and prescribed antihistamines (both of which seem to make things much worse).

A full cure does not seem to really exist at the moment, though there is speculation that the body can repair the problem itself if the ET is closed long enough (but hasn’t been proven).  There are several different treatments (often times surgery is involved) to try and alleviate the symptoms.

For most of us that suffer from this the best thing we can do is try to close the ET ourselves. This is done, usually, by holding our noses and trying to blow/suck in air as if we were breathing hard.  Sometimes this works and closes the ET for a small amount of time. Other times it doesn’t.  There is a danger to doing this too much or too hard in that it can potentially cause damage to the ear drums by pulling them in to the middle ear area.

I just felt I should type this up because of how rare it is and how misunderstood it is. I am constantly trying to close the ET myself and I know I must look like a complete weirdo when I do (I can only imagine what people think of me—probably think I have a coke addition or something). It’s also part of the reason why I’m so silent most of the time. It’s very hard to hold a conversation when experiencing autophony.

This post is just meant to bring some awareness to the world about this condition.  I hope one day mine either goes away or a cheaper cure is found

Categories: Life

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