Patulous Eustachian Tube (PET)

Samantha was diagnosed with Patulous Eustachian Tube (also known as PET) in October 2012.

After months of her primary care physician telling her to wear a sweatband when she works out to prevent whatever was causing her autophony she began seeking answers elsewhere. After 12+ appointments with over 9 specialists a wonderful doctor was able to determine what was wrong. They diagnosed her with PET. She was given the name of one (of only 3) specialists in the US that could help her with her condition. Once she was informed of the 11+ month waiting list for the initial consultation she began looking at more natural and immediate alternatives. So she began combining her knowledge of yoga, exercise, weight loss, stress, anxiety, meditation, medical advice, and first-hand experience of Patulous Eustachian Tube to come up with ways to reduce the symptoms without surgery. Since then she has managed to reduce the autophony to an infrequent intermittent issue and has come to peace with her condition.

If you have PET no matter what area of the world you are in please feel free to email or contact her. Together we can figure out how to make this condition a little more bearable for each of us.
~Blessings to all.

 

UPDATED January 2015

"What works for some PET sufferers does not work for others. I wish I could tell you it can be fixed forever, but I have not been around long enough to know what works forever or not.

So far for me a few things have worked.
1. I had my jaw realigned by a medical dental specialist (Dr. Kurban) in Boston, Massachusetts, USA & sleep with a retainer in overnight to keep it aligned.
2. I meditate one hour every day.
3. I spend a lot of time upside down in inverted Yoga Poses.
4. I try to keep my ears away from cold weather.
5. I exercise regularly to allow my heart rate a higher tolerance before it increases.
6. I limit my exercise to prevent extreme heart rate increases (which causes blood to flow from the area around her ears & the tubes to stick open) and I keep cardio exercise between 20-45 minutes... if the autophony begins I stop immediately to relax/breathe/meditate until it goes away. I don't do cardo again that same day.
7. I don’t eat breads (wheat/gluten), dairy, corn, soy, GMOs, MSG, or sugars. (Wheat & sugar seem to be the two that effect PET the most.)
8. I rarely drink alcohol. (less than a 4oz. small glass of wine once a month)
9. I use a nasal spray (Afrin) & blow/clear my nose just before the airplane takes off when I travel.

I have no idea what will work for you, but I made all of these changes before my symptoms improved and now my ears are manageable. Sometimes there is a little pain, sometimes the autophony comes back briefly, but it is always after I break one of the rules I listed above. I still have not figured out how to get rid of the 24/7 tinnitus, but I've had that since I was a young girl. So it would be odd for it not to be a part of my audio world." -Samantha

 

FOR REFERENCE

 

Samantha's PET symptoms

1. Autophony in both ears (The sounds inside her head are intensified so loud she can actually hear her eyeballs move, and everything going on outside her head sounds like Charlie Brown's teacher. When she speaks, even softly, it sounds like she is yelling into a megaphone inside her head.)
2. Pain in both ears, pain stronger in the left ear
3. 24/7 Tinnitus since she was a young girl
4. Intense pressure & brief high pitch piercing noise inside the head when pressure shifts in the room (High pitch sound worse & different than tinnitus.)
5. Vertigo
6. Hearing loss in her left ear
7. Fullness feeling in her ears

Samantha's PET triggers
PET is a physical disorder in the eustachian tube of the ear that causes it to stick/stay open. Resulting in the above symptoms. There are certain "triggers" that can cause this to happen more often than not.

1. Stress
2. Air pressure changes
3. Weight loss
4. Hormones from oral birth control
5. Heart rate increases above recommended cardio levels
6. Eating unhealthy (gluten, sugars, GMOs, MSG)
7. Cold temperatures
8. Alcohol

 

PET Patulous Eustachian Tube Website
PET Patulous Eustachian Tube Facebook Support Group
PET Patulous Eustachian Tube National Organization for Rare Disorders
PET Patulous Eustachian Tube Office of Rare Diseases Research