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    Old 05-12-2003, 01:18 PM   #1
    Jay Werner
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    Post Patulous Eustachian Tube

    I am a suffer of patulous eustachian tube of five years and seek anyone who may have this same rare ear disorder. I have seen many ent doctors without any good advice or solution. May symptoms are fullness in the ears with crackling and popping sounds. I've been told that the eustachian tube is always open which is the reason for the loudness of my voice. Under any sort of duress my ears pop open and my voice gets extreemly loud as if my vocal cords are right next to my eardrum.
    This has been very difficult to deal with since the loudness is so distracting that it effects my concentration and speaking ability. I totally avoid social engagements and dread holding staff meetings as my job requires. I am very curious to know if anyone else has this disorder and what may be the cause.

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    Old 05-25-2003, 12:13 PM   #2
    eman22
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    Your answer to your problem from what I have been told is Dr. Dennis Poe in Boston MA. From what I have been told he is the EXPERT in PETD and all other ETD problems. I myself have an appointment with him this month. I have spoken to many people who have our problems and they all confirm that he is the doctor to see when all others cant seem to find a solution.
    I don't know if this helps, but if your like me, any news is good news. ETD problems are maddening and most ENT are unable or unwilling to help.

     
    Old 07-21-2003, 07:40 AM   #3
    Jay Werner
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    Hello Asian eyes,
    I'm still receiving post from Healthboards.com. Tell me about your symptoms, how long and and what you do for relief.

    Jay
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    Old 07-23-2003, 12:24 PM   #4
    Jay Werner
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    eman22,
    I'm interested in talking with Dr. Poe and possibly setting up an appointment. Do you happen to have his
    Phone number? Also, let me know how your appointment goes.

    Jay
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    Old 07-24-2003, 08:53 AM   #5
    eman22
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    Due to the fact that the moderator wont let me pst phone numbers on this site, you will have to do a search for Dr. Dennis Poe. He's real easy to find. Just do a google search under Dr. Dennis Poe, Boston MA. Unfortunately I had to cancel my apt with him last month and I rescheduled for Oct 2nd! Be prepared to wait a LONG time to see this man. All I can say, is that from talking to SEVERAL people, he is THE man to see for P/ETD problems. I guess I'll just to have to see for myself.
    I have made and appointment with a doctor from the Johns Hopkins Medical Center in Maryland. Dr. Carey is his name I beleive. Anyways, He is one of the few ear doctors that I was told look for specific problems that others tend to over look. At this point, I just want to see someone who specializes in eustation tube dysfunctions, PERIOD! Im hoping there are some answers I can get other than "I can't find anything unusual."
    I will let you know how my apointment goes next Wednsday. Like you all, talking on this site and sharing ideas and treatments have been a real source of comfort for me. Hopefully I will be able to gather some treatment options that may help everyone else as well.
    Take care

     
    Old 07-29-2003, 07:21 AM   #6
    Jay Werner
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    I've got some questions for anyone that has been diagnosed with PET and is willing to answer - Tough questions but important to know.

    1) Have you ever had an eating disorder where you vomit on a regular basis for longer than 1 year?

    2) Ever have a drug addition to cocaine where you snorted through the nose for longer than 6 months?

    3) Have you been diagnosed with any type of allergies? Food or otherwise? Milk? Specify types.

    4) Do you have high blood pressure or hypertension?

    5) Do you have any type of stomach issues with digestion?

    Everyones reply would sure be appreciated.

    Thanks!
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    Old 07-31-2003, 08:39 PM   #7
    slynnb
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    jay,
    i have had pet since the age of ten. over the past sixteen years, it has progressed very slowly to a point where i am without the symptoms only when i lie down. i hear my voice and respirations in my left ear at deafening volumes. i have tried sniffing chlorinated water, drinking iodine tincture, and have been doing allergy shots for sixteen months without relief. i am interested in what you find during your appointments. please keep us posted.

     
    Old 08-03-2003, 11:13 AM   #8
    AndyPandy
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    I think I have PET, My ear pop and feel "full", they always have done.

    When I was young an ear doc said I might need gromets, but I didn't get them.

    These days I control it by holding my nose and mouth shut, and then trying to sniff really hard. I guess the pressure causes the eustachian tube to shut.

    If I get a cold it doesn't work as well, but usually it does.

    Hope this helps someone!

     
    Old 08-04-2003, 12:45 PM   #9
    Jay Werner
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    Basatum,
    I am very interested in how the Prozac works out for you. Someone in the past (can't remember who) suggested trying to use an antidepressant drug. I never tried, but might consider it if there is good results from others like yourself.

    Questions:
    What percentage of relief are you getting while on Prozac?

    How long have you been depressed? Is there a possiblity that you were depressed prior to PET?

    Good Luck to you, this is encouraging news.

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    Old 08-06-2003, 07:07 AM   #10
    Jay Werner
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    Basatum,
    Did you by any chance snort cocaine during your college years? Is it possible that tissue around the eustachian tube may have been damaged if you did.
    Just a thought...

    Anyone else out there with the same history?
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    Old 08-25-2003, 09:35 AM   #11
    jodevine
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    Hi,

    I am taking Jia Wei Gui Pi Tang right now for PET. I have been taking it for almost two weeks. So far, no improvement. Has anyone had any recovery from PET. My doctor says its because I lost 15-18 lbs in a short period of time. Says to gain it back and it would go away. I put 5 lbs back on but hasn't helped. This is driving my crazy. I am looking for someone to say that they have a cure.

     
    Old 07-10-2004, 12:19 PM   #12
    petpeeve
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    Re: Patulous Eustachian Tube

    Hi: I am new to this site and have been going through as many posts as possible to see if I could find someone with symptoms similar to mine. It sounds like most of us have some of the classic symptoms like fullness and the autophony where our voice sounds amplified. Your note is one of the first that complained of speaking and avoiding social engagements. I find that the speaking has become almost impossible in any setting outside of a quiet room with no background music, tv etc. i have become isolated socially and occasionally feel housebound and try again only to come home and say it isn't worth the discomfort. My voice seems stuck in the soft mode although I could speak loudly if it was critical but over time have just learned to be quiet. That has not been easy but any sound inside my mouth is amplified. I find the electric toothbrush horribly loud and I can't hear anything someone is saying to me if I am brushing my teeth or talking or chewing. Otherwise my hearing tests are perfect. I have tried earplugs and that helps the resonance in my own head but people still have a hard time hearing my soft voice and the problem is everyone is muffled at that point. I even tried to buy one of the amplification systems hoping that I could speak softly but my voice would be loud enough for others to hear. The problem with that is you have to speak at least loud enough that the vibrations can be amplified and I found that the only thing comfortable for me was to have speech that was soft and didn't vibrate as much. So it did help others to hear me but didn't help my situation of speaking being uncomfortable. I just went back to one on one and quiet environments. It must be really hard if you have to give presentations. I find the phone is the easiest way to communicate because I don't have to project my voice --it feels even more comfortable than sitting across a table in a quiet room trying to talk. Just that little bit of distance seems to make a big difference inside my head. Have you found any ways of doing your work and presentations since your last post? I am really anxious to see what others are doing about the speaking problem. Thanks

     
    Old 07-17-2004, 09:21 AM   #13
    Sinthetic
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    Re: Patulous Eustachian Tube

    Jay -

    Historically, I fall into everyone of your noted scenarios with the exception of the first one (weight loss). Very freaky.

    Recently diagnoses with ETD and cervical adenitis...

    Curious to know if this is also your background as well...

    Does this board facilitate private messages? - I wasn't able to find it...

     
    Old 07-28-2004, 09:16 AM   #14
    petpeeve
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    Re: Patulous Eustachian Tube

    Quote:
    Originally Posted by Sinthetic
    Jay

    Does this board facilitate private messages? - I wasn't able to find it...
    Hi: I am fairly new to the board also but from what I read about the rules there are no private contacts or web links etc--there is a section you can go in and read about policies that is very helpful.

    I read the posts in this thread and someone had asked about symptoms like weight loss and stress and a few other things. I looked at the list and didn't match up with any of those. I have had allergies when I was young but never any ear infections or problems with the ears. This PET condition is certainly stressful and irritating to say the least but I am about as calm and chilled out as they come. Even on the worse days of ear pressure I still enjoy life but I have had to make some major changes in how I interact with people. I speak softly so friends know to stand close if they want to converse. Forget trying to chat with someone across the parking lot or even at a distance of 6 feet. Not worth all the noise that I hear inside my own head. I have never read anything that relates PET to stress but we all know that stress impacts the body in lots of ways --certainly can't help. The allergies I had were treated with nasal sprays to reduce inflammation so perhaps that contributed but no evidence. My nose is always stuffy on the side that has the PET. But even if that side was completely blocked a healthy ET should open when I swallow or yawn. So who knows? Sure would be nice if we knew what caused it or even what made it worse. I have tried all sorts of things to see what triggers bad days but it always seems to be the same from the moment I wake up until I go to bed. I get no relief from putting my head between my legs or lying down like some folks do but that is probably due to the fact that I have patulous vs semi-patulous. The only help seems to be drinking lots of water and I mean lots!! Something about hydration --drinking lots only makes it slightly better but being dehydrated really cranks up the symptoms. Anything that dehydrates me like teas or coffees or alcohol worsens the condition so I avoid them now. Anybody else notice that dehydration worsens their ear pressure?

     
    Old 08-11-2004, 04:37 PM   #15
    ericstolp
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    Re: Patulous Eustachian Tube

    I have PET. I'll explain.

    2 1/2 weeks ago I hit the water very hard while water skiiing. I immediately felt pain in my right ear along with a plugged up feeling. This was quite annoying and has lasted for the 2 weeks following.

    A few days after the injury I went to an ENT. He explained that I had fluid in the middle ear and that there was nothing I could do but wait. I understood this because a couple years ago I received a blow to my head which caused the same thing and it went away in a few weeks.

    Here's the problem. Now I have the exact symptoms of PET. After a couble of weeks following my injury, my eustachian tube has finally opened to release some of the fluid in the middle ear. However, now the tube will not close. For about 3 days I have been suffering all the symptoms of PET that I have been researching on the internet. The PET problems are worse than the original. It's driving me nuts.

    Symptoms Include:
    Popping and crackling in ear all the time
    roaring tinnitus, synchronous with respiration
    feeling of fullness in the ear
    voice is heard clearly though the auscultation tube and has a rough, hollow quality, or alternatively stated as my
    voice is too loud, distorted, or has an echo-- this symptom is called "autophony (This is what is really annoying for me)

    Unlike many other people I have read about, I know that my skiiing injury caused my condition and that because of this I hope that this is short term problem. I sure feel for those that have had PET long term.

    Well, I shouldn't say that my injury caused my PET. As I stated above, it caused my ear to be plugged and filled with fluid. I was so annoyed by this that I tried a number of things to get my eustachian tube open. Some of the things I tried were:

    Excersing hard (I've subsequently read this can make PET worse)
    Shaking my head
    Holding my nose shut and blowing nasally to "pop" the tube open.
    Taking flonase
    Taking a decongestant.

    I wonder if any of these actions has induced my PET symptoms?

    I just wanted to post this in case it helps anyone in anyway. I know it was a relief to me when I discovered this thing called "Patulous Eustachian tube" My ENT did not mention it. I found it on the internet.

     
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