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  • Ear Problem, Please Help!

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    Old 01-12-2007, 07:57 AM   #16
    winterj
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    Re: Ear Problem, Please Help!

    wow, i am reading about myoclonus now...sounds very similar to PET! Guess I'll ask my doctors about that too.

     
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    Old 01-12-2007, 09:28 AM   #17
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    Re: Ear Problem, Please Help!

    thanks for tip about Bartholomew ....there are alot of conditions that can cause autophony....and finding zebra's can be hard. I am unclear on my own diagnosis. My specialist in LA says he has a client with PET...he only get symptoms when he plays tennis. Lucky him....
    The symptoms of PET is often treated by irritating the sinuses with PREMARIN nose drops. It is a female hormone. Cure ?
    When I was 18 years old... in my right ear I also had a rare condition known as bells palsey. Not many docs knew or still know about it's cause...cure etc. It related to the herpes/chicken pox virus in the ear area. It caused facial paralysis in me .like stroke like. I had it for 3 months straight....with a paralysed face..took steroids..and massaged my face rigoursly..also had electrical stimulation for the nerves...no one knows for sure ....all these things are STRESS related...for me...somehow my Open/Clogged ETubes seems related to a virus somehow. It is just my intution...especially since it followed a cold...in early 2005 2years ago I was feeling fine... Then I got a sinus and ear infection. I have headaches since...CT scans, MRI's etc..OSA tests (mild)...then when I thought it was bad I got a cold this last Nov....now on top of all that I have PET, Mylocous, Extremely sensitive hearing, clogged, cloudy, painful, pressure, neck pain, occassional tittinus...
    sorry for the rant...but it's a bit much. thanks

     
    Old 01-12-2007, 10:49 AM   #18
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    Re: Ear Problem, Please Help!

    SingingEar - how do you differentiate between the PET and the Myoclonus? The symptoms sounded so similar on the site I was reading!

    Dr. B. is the one w/ the Ear Foundation in Santa Barbara who came up w/ the Patul-End spray...you've probably seen it on other posts here.

    I've read that a lot of people get PET after sinus/ear infection like you said, but i've never had one that i've known of. However, i do get stressed easily, so i wouldn't be suprised if there's a link there. I also think I'm super sensitive to certain things in the environment and that could be one of my causes. Also, I don't know if I have a viral infection, but my lymph node is often swollen when my ear is acting up, and the lymph nodes are related to infections.

    Anyways, I feel your pain. I always seem to get the disorders that no-one else has and people never understand my problem!

     
    Old 01-12-2007, 01:55 PM   #19
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    Re: Ear Problem, Please Help!

    Quote:
    Originally Posted by winterj
    Sure, sounds good to me. Sounds like we are really close - I am between Sydenstricker and Rolling. When I called to make an appt w/ Dr. Poe, the receptionist said I would need a written referral letter from my doctor diagnosing the problem first; same thing for Dr. Sismanis. Maybe more and more people with these problems are coming out of the woodwork, which would be a good thing. I've also met someone in Fredericksburg who had surgery with Dr. Poe - I think he was the first or one of the first. He said surgery helped a lot, but he still occasionally has symptoms.

    So right now it is humid outside, or maybe it's the air pressure changing since it's supposed to rain. Because of that, my nose feels stuffed, and when I swallow, all of a sudden when I breathe I feel and hear air in my right ear, almost as if it's blocked and the air won't go all the way through. So I'm tilting my head to clear it, but that gets uncomfortable after a while. So I'm also drinking lots of water, which thins everything out and makes my nose feel like I can get air through, which in turn helps my ear. When I talk, the "air" also moves with my voice, and I can hear it in my ear, like a simultaneous echo. My symptoms are also set in motion when I exercise, even just fast or hilling walking.
    hi jenny,
    your right, we are right next to each other, i live in lake forest, its a neighborhood on huntsman lake.
    i also know jim in fredricksburg, we actually went to surgery together in boston when he had his 2nd ear done.
    the air moving with your voice sounds like myoclonus, with p e t you hear your voice and breathing in your ear loudly like shouting, like talking in your ear with a megaphone. i had movement, vibrations and and echo effect, but it was not my voice after all it was the ear drum spasming to my voice. does this sound like you?
    maybe the starbucks at huntsman?
    lib

     
    Old 01-12-2007, 02:06 PM   #20
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    Re: Ear Problem, Please Help!

    Quote:
    Originally Posted by singingear
    thanks for tip about Bartholomew ....there are alot of conditions that can cause autophony....and finding zebra's can be hard. I am unclear on my own diagnosis. My specialist in LA says he has a client with PET...he only get symptoms when he plays tennis. Lucky him....
    The symptoms of PET is often treated by irritating the sinuses with PREMARIN nose drops. It is a female hormone. Cure ?
    When I was 18 years old... in my right ear I also had a rare condition known as bells palsey. Not many docs knew or still know about it's cause...cure etc. It related to the herpes/chicken pox virus in the ear area. It caused facial paralysis in me .like stroke like. I had it for 3 months straight....with a paralysed face..took steroids..and massaged my face rigoursly..also had electrical stimulation for the nerves...no one knows for sure ....all these things are STRESS related...for me...somehow my Open/Clogged ETubes seems related to a virus somehow. It is just my intution...especially since it followed a cold...in early 2005 2years ago I was feeling fine... Then I got a sinus and ear infection. I have headaches since...CT scans, MRI's etc..OSA tests (mild)...then when I thought it was bad I got a cold this last Nov....now on top of all that I have PET, Mylocous, Extremely sensitive hearing, clogged, cloudy, painful, pressure, neck pain, occassional tittinus...
    sorry for the rant...but it's a bit much. thanks
    singingear,
    i want to point out that both p e t and middle ear myoclonus are very rare.
    i have to wonder what the likelyhood of developing both disorders is, i believe one problem is probably to blame, but figuring it out is an adventer.....i know this from my ordeal.
    lib

     
    Old 01-12-2007, 06:45 PM   #21
    singingear
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    Re: Ear Problem, Please Help!

    Lib,
    I know...2 rare disorders?? ..actually that would make 3 for me...but thats another story. In brief 4 years ago I had a benign but often unheard of tumor removed from my knee. It is called PVNS....talk about horror stories....DO NOT READ ABOUT IT.unless you want to be scared...anyway...very rare. and now this...I should play the lottery with this luck!!

    Winterj,

    it's hard to tell exactly what condition (IT) is...and I e-mailed santa barb dr today...guess i could try the drops...couldn't hurt but some stinging.
    I am very hesitant to be convinced of a diagnosis either way at this point because it was following a cold/virus...lots of stress related to the condition itself and my determination to FIND a diagnosis...
    there is too much and not enough information at the same time...PET...or myclonus....both rare..or something else...or a combo.....and there is so much varied opinion ....of course when you hear your own voice in your ear...you gotta wonder..and when certain symptoms match up....what is causing this???? Stress is a factor either way...
    I can't have this...I am a singer/songwriter/musician (as a living & love). with PET I am done. so I just can't have it..or it's gotta go away.

     
    Old 01-12-2007, 07:36 PM   #22
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    Re: Ear Problem, Please Help!

    singingear....do you hear you voice loud like a megaphone? and your breathing loud like a megaphone?
    lib

     
    Old 01-13-2007, 09:30 AM   #23
    singingear
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    Re: Ear Problem, Please Help!

    I don't know about megaphone volume wise...but if you put your finger in your ear and talk....that is exactly how I hear (autophony)

     
    Old 01-13-2007, 12:09 PM   #24
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    Re: Ear Problem, Please Help!

    well that could be from a few different disorders. can you hear your breathing loudly?

     
    Old 01-14-2007, 12:49 AM   #25
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    Re: Ear Problem, Please Help!

    yes somewhat loud ...it drives me batty when it come on.

     
    Old 01-14-2007, 09:52 AM   #26
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    Re: Ear Problem, Please Help!

    lately what happens most is..when i swallow both ears feel extremely cloggy...like the e-tubes move abnormally.....also when I belch (burp)
    and the feeling is almost a spasm in both ears...(but when I read about mylocous) it doesn't seem to describe this either...so it really confusing.
    I don't know...very strange...trying to describe these symptoms to someone else is sometimes like trying to tell a blind since birth person what purple is.

    ..not so much autophony in left ear in the last 2 weeks (thank god)...this is my main problem when it happens ...

     
    Old 01-14-2007, 03:40 PM   #27
    winterj
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    Re: Ear Problem, Please Help!

    hi all,

    Today has been miserable for me - very muggy weather out, and i made the mistake of going for a long walk in it - afterwards, my ear wouldn't stop "popping", and my nose was super stuffed, so i drank lots of water and sprayed lots of stuff up my nose - PatuelEnd and lots of saline...of course a lot of it dripped back down my throat, so that's burning now, and I think I'm lightheaded from all the sniffing/sniffling. Ended up canceling my evening plans cause it took my energy away, not to mention it's kinda hard to socialize when your throat's burning and you feel lightheaded.

    Anyways, I don't know anymore about what I have, but at least my allergist agreed to the prescription referral for Sismanis. I say I feel "air", but I don't know if that's what it really is - maybe it is my breathing. I'm always trying to think of how to explain this to other people, and "air" just seems easier for others to comprehend. Also, I don't think most people out there realize how debilitating these problems are since they can't "see" the symptoms, and I'm not sure if my explanations actually get the point across.

    Anyways, LIB - Starbucks at Huntsman would be good, maybe one evening this week?

    I know the guy in Fredericksburg as James, so it's probably him.

     
    Old 01-14-2007, 04:39 PM   #28
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    Re: Ear Problem, Please Help!

    Quote:
    Originally Posted by singingear View Post
    lately what happens most is..when i swallow both ears feel extremely cloggy...like the e-tubes move abnormally.....also when I belch (burp)
    and the feeling is almost a spasm in both ears...(but when I read about mylocous) it doesn't seem to describe this either...so it really confusing.
    I don't know...very strange...trying to describe these symptoms to someone else is sometimes like trying to tell a blind since birth person what purple is.

    ..not so much autophony in left ear in the last 2 weeks (thank god)...this is my main problem when it happens ...
    well i guess ill solve your problems......yes in fact i can tell for sure that with myoclonus when you swallow or burp it will trigger the spasms, ahhh another clue.....and no you will only find a few things out there that they write about burping and myoclonus, one paper was by dr epley, he had 2 patients that had sx with burping, but i have found at least a dozen or more....i am one of them.
    funny as you continue to add sx to posts it matches more and more....
    i believed mine to be p e t related......turned out it was not, it was myoclonus.....hope this helps.

     
    Old 01-14-2007, 04:57 PM   #29
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    Re: Ear Problem, Please Help!

    hi jenny,
    funny i was getting popping today as well today, i think it can be weather related too. but i do better in the summer, not sure why.
    yes that is jim, i know him, we email a bit, and instant message, and went to surgery together in aug 04. he is better, he was the one who called poe after our surgery, and said i was the same, we went back the next morning together and poe the wonderful dr he is, brain stormed and figured me out.
    jim was a huge help to me....
    i think air is myoclonus because there is no mistaking autophoney......i thought what i was feeling and hearing was autophoney, but after surgery dr poe said it is hearing your voice and breathing like a megaphone in your ear, loudly and clearly......mine was noises and sensations, movement, vibrations and distorted.......a bit different, but not by much..
    tomorrow is a holiday......are you working?
    lib

     
    Old 01-14-2007, 05:08 PM   #30
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    Re: Ear Problem, Please Help!

    i feel like i'm playing the game "taboo" in here!

    koyla - what do the breathing exercises help w/, as far as ear problems go? I have a friend who does them and was showing them to me the other day.

     
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