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  • Patulous Eustachian tube-Please help

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    Old 06-24-2005, 12:18 PM   #1
    btkirb2
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    Patulous Eustachian tube-Please help

    Hi everyone, last year around November I think, I noticed that my right ear would often times feel stuffy. This has persisted now for about 8 months. I believe I have a patulous eustachian tube. I often find that if I put my head down for a couple seconds or if I lie down my ear will clear up immediately. I also get the feeling of ear stuffiness and popping along with autophony, which can get very frustrating.

    Sometimes I'll have a pretty good day where it will not bother me much at all, while other days it will be hell, with me constantly trying to clear my ears without much success.

    I have been to two doctors so far. The first doctor just looked in my ears and cleaned out some ear wax. He said my ears looked fine. He also gave me a hearing test. He said my hearing is excellent. He gave me a prescription for rhinocort which I had been using on and off for about a month.

    Yesterday I went to another doctor and I printed out some info from the internet about PET because thats what I think I have. He looked at my ears first and also said they looked fine. Then he put something through my nose to see the eustachian tubes and said that my right one was a bit more open than the left. He told me this is pretty uncommon and he wasn't really sure what to do about it. He said he would go through his medical literature or whatever and get back to me in a few days whether he can help or not. He also told me to stop using the rhinocort which could make the problem even worse.

    Does anyone know what to do? Does this ever go away? It is truly driving me nuts and is really starting to take a toll on me. I find myself very down and depressed lately and I think it mostly has to do with this problem. Like I said some days are pretty good but other days are horrible. I wish I could figure out what causes it to act up like this. If you have any ideas or any help please tell me! Thank you for reading all this.

     
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    Old 06-24-2005, 12:41 PM   #2
    becca1987
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    Re: Patulous Eustachian tube-Please help

    I have had the same problems with my ears for the last 3 years...although I have not done any testing except the hearing test and looking at my ears every time I go to the doctor. My doctor said that I had Eustachian Tube Dysfunction...
    My symptoms are:

    CONSTANT DIZZY...BUT NOT THE DIZZY LIKE THE ROOM SPINNING...ALMOST LIKE A SWAYING KIND OF DIZZY...

    Ears full all the time...constantly blowing my nose or trying to POP my ears...

    I don't know what else to do, my schedule is not condusive to having a lot of testing right now...but I am just about to the point where I need to. I have ruled out (through testing) my heart being the cause of my dizziness and also had a MRI of the brain about 2.5 years ago...may have been longer. But yeah, I wish some one would shed some light on this...

    Becca

     
    Old 06-24-2005, 12:57 PM   #3
    lib
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    Re: Patulous Eustachian tube-Please help

    Quote:
    Originally Posted by btkirb2
    Hi everyone, last year around November I think, I noticed that my right ear would often times feel stuffy. This has persisted now for about 8 months. I believe I have a patulous eustachian tube. I often find that if I put my head down for a couple seconds or if I lie down my ear will clear up immediately. I also get the feeling of ear stuffiness and popping along with autophony, which can get very frustrating.

    Sometimes I'll have a pretty good day where it will not bother me much at all, while other days it will be hell, with me constantly trying to clear my ears without much success.

    I have been to two doctors so far. The first doctor just looked in my ears and cleaned out some ear wax. He said my ears looked fine. He also gave me a hearing test. He said my hearing is excellent. He gave me a prescription for rhinocort which I had been using on and off for about a month.

    Yesterday I went to another doctor and I printed out some info from the internet about PET because thats what I think I have. He looked at my ears first and also said they looked fine. Then he put something through my nose to see the eustachian tubes and said that my right one was a bit more open than the left. He told me this is pretty uncommon and he wasn't really sure what to do about it. He said he would go through his medical literature or whatever and get back to me in a few days whether he can help or not. He also told me to stop using the rhinocort which could make the problem even worse.

    Does anyone know what to do? Does this ever go away? It is truly driving me nuts and is really starting to take a toll on me. I find myself very down and depressed lately and I think it mostly has to do with this problem. Like I said some days are pretty good but other days are horrible. I wish I could figure out what causes it to act up like this. If you have any ideas or any help please tell me! Thank you for reading all this.
    hi,
    explain your autophoney, are you hearing your voice loud in your ear? and your breathing?
    also, what kind of popping? can you describe it better...what triggers it?
    dr denis poe an amazing dr, is in boston mass....he is the expert in p e t, where are you located?
    lib

     
    Old 06-27-2005, 04:10 PM   #4
    moniqu1
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    Re: Patulous Eustachian tube-Please help

    Yes, you definitely have the symptoms of PET....I have the same disorder and it is horrible....it has been the root of my current anxiety & depression. I don't think there is much surgically that you can do. My doctor said she could take a piece of cartilege from another part of my ear and use it to make the tubes smaller. She is a specialist from Pgh., PA. However, the several patients she has done this procedure on are not completely cured. I know gaining weight can help, but who wants to do that!!! Also, try to steer clear of decongestants. My Dr. recommended Mucinex to loosen the phlegm and it doesn't cause your ears to open any more. It seems to work a little for me. On days that both of my tubes are open, I feel very spaced out and off balance when I try to walk, and of course, hearing your own voice is very disturbing also. It took me three years before I was diagnosed. I thought I had a brain tumor, or some other disease of the inner ear. It caused a good bit of anxiety and I also had panic attacks from the dizziness. Some days are going to be better than others, so hang in there, you are not alone!

     
    Old 06-28-2005, 04:48 AM   #5
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    Re: Patulous Eustachian tube-Please help

    Could gaining and losing lots of weight affect e tubes? I weigh about 55-60 kilos normally. But have been pregnant 3 times (full term) in the last 10 years. When I am pregnant I am enourmous. I put on about 20 kilos each time and lose it all when the baby is about 6 months old. When I weighed 80 kilos during my last pregnancy I could hardly walk and was like a barrell with legs - I am about 160cm tall (5 foot 2 I think). I am now about 61 kilos but my weight is not where it used to be - I have a bigger chest than I ever used to have and my legs and arms and stomach are way thinner. My face has also lost a lot of it's fullness. Could this affect my ears?

     
    Old 07-07-2005, 05:14 PM   #6
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    Re: Patulous Eustachian tube-Please help

    Actually, PET is worse when you lose weight. When you are heavier, your tubes are closed more. I don't know of any other conditions that are affected by weight except for PET which is what I have.

     
    Old 08-25-2005, 10:47 PM   #7
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    Re: Patulous Eustachian tube-Please help

    I have had great success with nose drops for Patulous eustachian tubes. Dr. DiBartolomeo in Santa Barbara at the Ear Foundation of Santa Barbara has developed the drops. They have given me back my life. Pet is awful. I saw 5 doctors before I was even diagnosed correctly. FJHAM

     
    Old 09-24-2005, 11:23 AM   #8
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    Re: Patulous Eustachian tube-Please help

    Hi FJHAM
    Can these drops be purchased online? I live in NC. and suffer greatly from PET! Any thoughts would be great.

     
    Old 09-26-2005, 05:21 PM   #9
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    Re: Patulous Eustachian tube-Please help

    Quote:
    Originally Posted by mcdaniel
    Hi FJHAM
    Can these drops be purchased online? I live in NC. and suffer greatly from PET! Any thoughts would be great.
    Yes the drops can be purchased from The Ear FOundation of Santa Barbara ( removed - no websites or emails ) They were patented by Dr. Joseph DiBartolomeo who suffers from PET himself. I actually went to see him in August. He is a wonderful person as well as highly respected otologist. ( removed - no telephone numbers ) Sorry I was slow in replying. I couldn't remember where I had posted the message. The drops are for the nose and are a little difficult to administer. If they are not given correctly they will not work. The people at the ear foundation are so nice and helped me over the phone before I visited Dr. DiBartolomeo. I am now at the point that I only use the drops every few days. At first use them daily until your eustachian tube becomes irritated enough from the drops to close. Please let me know that you received this message. PET is a horrible condition and people who don't have it cannot understand. The dr. who finally diagnosed PET for me had never seen it before and he is at a big university hospital. FJHAM


    ( please read and follow the posting rules )

    Last edited by moderator2; 09-26-2005 at 05:53 PM. Reason: please do not post websites that sell products - use the product name only

     
    Old 09-26-2005, 08:32 PM   #10
    FJHAM
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    Re: Patulous Eustachian tube-Please help

    McDaniel_ ( removed ) The drops are called PatulEND. They are great. Good luck. FJHAM

    Last edited by moderator2; 09-26-2005 at 08:45 PM. Reason: no websites - use the product name only - follow the posting rules as you agreed

     
    Old 10-05-2005, 04:44 AM   #11
    mazomatic_r
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    Re: Patulous Eustachian tube-Please help

    Hi FJHAM,

    it īs good to hear from a PET-Sufferer having success with Patul-End. Can you tell me how long you suffered from PET before you got the drops ?And how long did you take the drops until you could feel an improvement ? I have PET for so many years itīs very annoying.

    Thanks,

    mazomatic

     
    Old 10-05-2005, 06:11 PM   #12
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    Re: Patulous Eustachian tube-Please help

    Quote:
    Originally Posted by mazomatic_r
    Hi FJHAM,

    it īs good to hear from a PET-Sufferer having success with Patul-End. Can you tell me how long you suffered from PET before you got the drops ?And how long did you take the drops until you could feel an improvement ? I have PET for so many years itīs very annoying.

    Thanks,

    mazomatic

    Isn't PET the worst? It was turning me into a recluse because I couldn't stand to talk. I think the most annoying symptom was hearing myself breathe. It just started one day after an airplane flight. Of course , like most pet sufferers, I consulted 4 doctors before getting the right diagnosis. I was also treated for TMJ for several months (which I did not have). It took a few weeks for the Patul-end to work. Part of the problem for me was applying them correctly. Once I got the hang of that I now get immediate relief from the drops. Initially I used them daily. Now I use them as needed which is every 4 0r 5 days. Also I will reapply them two or three times until the symptoms are relieved. I also consulted with Dr. DiBartolomeo in his office. He showed me how to use the drops properly. I feel so fortunate that the drops have been effective for me. PET was making me crazy and extremely crabby. My symptoms only went away when I was sleeping. Have you tried the drops? FJHAM

    Last edited by FJHAM; 10-05-2005 at 06:12 PM.

     
    Old 10-06-2005, 02:45 AM   #13
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    Re: Patulous Eustachian tube-Please help

    Quote:
    Originally Posted by moniqu1
    Actually, PET is worse when you lose weight. When you are heavier, your tubes are closed more. I don't know of any other conditions that are affected by weight except for PET which is what I have.
    Actually my point was that I have LOST heaps of weight since I was last pregnant. I am now at about 52 kilos down from about 79 when last pg in 2000. I have lost the weight slowly though.

     
    Old 10-06-2005, 06:20 AM   #14
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    Re: Patulous Eustachian tube-Please help

    Could any one explain , whats the correct way to put the Patul-End drops. I got a leafllet from the Clinic showing how to do it but i am still not clear.

     
    Old 10-06-2005, 08:43 AM   #15
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    Re: Patulous Eustachian tube-Please help

    KSM 79 - I called the clinic in CA a couple of times to get help in applying the drops. I have more success using them while sitting. I sit on a couch whose back is at my neck. I tilt my head to the side at 90 degrees and then slightly lift my chin up. If you taste the drops you are not applying them correctly. It was difficult to get the hang of it. I already posted that I did see Dr Dibartolomeo in person and he showed me how to use the drops, too. Sometimes I have to repeat the drops several times when I am having trouble. Hope this helps. FJHAM

     
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