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Old 09-08-2007, 06:30 PM   #1
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Would someone who has PET answer this question please?

I want to compare a symotom to someone who knows definitively that they have PET. I am still unsure of what my problem is. Autophony - hearing my own voice but not hearing my breathing and heartbeat - is the problem which is most affecting my quality of life. I also have distortion of incoming sounds and music.

When I hold my nose and exhale til I hear the ears crack a little the autophony stops. It stays stopped til I yawn or 'open' the ears again. The absence of autophony usually only lasts a minute or less when the ears 'open?' on their own. Is this true with PET or would it indicate the opposite?

Thanks.

 
Old 09-09-2007, 10:39 AM   #2
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Re: Would someone who has PET answer this question please?

I read w*i*k*i*pedia about PET and am pretty sure my problem is PET. My autophony is that I hear my own voice and breathing, but not heartbeat. The incoming sounds are all normal. W*i*k*i*pedia says when you bend forward or lie down, the symptoms go away, which is exactly what I experience. I also read the PET homepage made by Japanese doctors, which says there are several grades for PET:
Grade 0: No symptoms
Grade 1: Symptoms sometimes in the standing position
Grade 2: Symptoms always in the standing position
Grade 3: Symptoms in the supine position
I think I belong to grade 1. Since I know bending forward can reduce the symptoms, I use it as a temporary treatment everytime the eustachian tube opens so that it won't last too long.

I have not tried holding nose and exhaling. When I yawn, sometimes it opens the eustachian tube but sometimes it closes the tube. I hope this information helps.

 
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Old 09-09-2007, 01:18 PM   #3
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Re: Would someone who has PET answer this question please?

Thanks. I have seen a specialist and it is up in the air whether this IS PET.
My symptoms do not exactly preclude nor prove PET or atypical Meniere's or perhaps several other things. Since most of the things I experience are 'subjective' in that the dr cannot see them himself and he relies on my reporting of them and I have never experienced anything like this before it helps a lot to hear from others who have.

If someone who has been definitively diagnosed with PET could do that little experiement it would clarify an important part for me.

 
Old 09-13-2007, 06:37 PM   #4
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Re: Would someone who has PET answer this question please?

a big way to tell if you have PET from what I was told is that if you flip your head upside down or lay down, it goes away. I was misdiagnosed with Regular Eustachian tube dysfunction for years and did my own research. I found this out, brought it to my ENT and he said I definitely had PET. Since then many ENT's have agreed. For me it is directly related to my hydration level somehow. Coffee and exercise bring it on pretty severely, even climbing up stairs. Water sometimes eases it. Weird I know.
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Old 09-14-2007, 05:24 AM   #5
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Re: Would someone who has PET answer this question please?

Thanks for your response. I have seen that explanation too. When I lean over so my head is completely upside down it stops but when I lie down it does not stop. The dr has looked into my ear when I breathe and does not see movement of the drum but he says this does not rule it in or out. I will work more with the hydration but I drink fluids constantly. Exercise does seem to make it worse, altitude makes it better, it fluctuates constantly and it NEVER goes away, going on 4 months now. I have constant echoing of my voice and distortion of music and other incoming sounds including voices to a greater or lesser extent. It does not seem to fit any one diagnosis perfectly and the treatment for one is often the opposite of the other. IE Meniere's (which my dr suspects) vs PET on fluid in body. I tried the estradiol nose drops and it became IMMEDIEATELY worse and I stopped. I have not yet suffered from hearing my own breathing and heartbeat and do not want to risk that if possible. I want to diagnose definitively BEFORE I treat as no treatments are without risk, especially since I have only one hearing ear. That's why I was asking about this particular phenomonon. It's very distinctive to me in my case but doesn't seem to be something anyone else with PET has ever experienced so I am starting to doubt the PET connection. I have a sense that it is some kind of congestion rather than pet although the dr does not see this.

Since there don't seem to be any noninvasive ways to know for sure, I am looking for clues from people who have experienced this themselves.

Thanks in advance to anyone else who has PET and can tell me if the echoing stops briefly after they hold their nose and blow til the ears crack.

 
Old 09-14-2007, 10:16 PM   #6
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Re: Would someone who has PET answer this question please?

Sorry I didn't answer the question, Myrtle. No, that does not happen. Plugging my nose and blowing makes it worse. I'm so sorry for what you're going through, and how it's non stop and does not quit. Mine is intermittant and it's horrible, I can't imagine it being nonstop. Keep us posted and I hope they figure it out!!!
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Old 09-15-2007, 03:59 PM   #7
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Re: Would someone who has PET answer this question please?

Thanks Azunprinzess. That's exactly what I was wondering. Sometimes I feel like I have the opposite, some kind of odd congestion because I also 'hear' some fluid (air?) moving in my ear when I move my head suddenly. But surely the dr could see that. (?)

I'm also wondering if I could have that myoclonus because now that I am watching for it I do notice some twitching in the ear, clenching in the jaw and something that causes sudden bell like noises when I am falling asleep.

Anyone else with PET or perhaps with another diagnosis want to tell me what happens to the autophony when you try this? I really do appreciate the answers. Dr's just don't have time or enough experience with some of these oddball things to answer and differentiate it seems.

Last edited by myrtle59; 09-15-2007 at 04:01 PM. Reason: add something

 
Old 09-16-2007, 10:20 AM   #8
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Re: Would someone who has PET answer this question please?

Myrtle, I don't have any of the symptoms you described. Sounds like it could very well be something else. Sucks. Sorry, maybe it's something curable though.
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