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    Old 09-30-2008, 04:04 PM   #1
    InnearPeace
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    Patulous Eustachian

    Hi! Hope everyone finds me here on this new thread for Patulous Eustacian Tube sufferers. This has been very theraputic for me!

    Just got my PatulEnd drops. They are horrible! It went straight to my throat and burned. The taste and burning were terrible! According to the directions this means I did it wrong and just wasted it. It won't be easy to give it another try. What did I do wrong? Tilt my head too much, not enough?? Any advice? Robert, I know you said it was hard to do it right, but was it this unpleasant for you?

    nlaurensays,
    Your positive attitude is refreshing. Thank you! Keeping busy is no problem for me, but I don't think it helps me deal with this. Drinking a lot of water is always a good idea so I am working on this. I wonder if the nasal saline would at least allow me to practice reaching the eustacian tubes without all the unpleasantness, before trying Patulend again?

     
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    Old 09-30-2008, 10:46 PM   #2
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    Re: Patulous Eustacian

    Robert - the last thread closed before I could respond with the supplement info.

    Every day I take 1 250mg Glutathione capsule; 2 100mg CoQ10 capsules; 2 or 3 100mg Grape Seed Extract; 1 1000mg Taurine (I forgot to mention this one; it supports nervous system health); 2 or 3 150mg Magnesium; and 2 500mg NAC capsules. I have not experienced a complete remission (yet), but my symptoms always get worse when I forget to take these, and then significantly diminish when I'm using all of them simultaneously again.

    Not to overextend my own experience, but if I had any kind of troublesome ear condition, and especially PET, I would definitely try all of these out.

     
    Old 10-02-2008, 07:18 PM   #3
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    Re: Patulous Eustacian

    I haven't given up on the Patulend. Sometimes its better than others, but I'm still not liking it. I've started the tea as well. That I can tolerate. Do you think it is OK to add sugar or sweetener? Of course it is too soon to see if any of it helps. I do have a question about the Patulend though. The directions say "use as needed". I'm not sure how often I should use it right now when my problems are constant.

     
    Old 10-04-2008, 05:22 PM   #4
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    Re: Patulous Eustacian

    Robert, no let-up from the constant symptoms since the tubes were inserted.

    I have felt a warm sensation in my ears, but not really any pain or burning. I assume that's a good sign, but who knows. I can barely bring myself to use the Patulend once a day, but I'll see if I can muster up the nerve to do at least twice a day. This is all so frustrating! I won't give up though. Not yet anyway. Let me know how the vitamin supplements go.

     
    Old 10-04-2008, 05:22 PM   #5
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    Re: Patulous Eustacian

    Robert, no let-up from the constant symptoms since the tubes were inserted.

    I have felt a warm sensation in my ears, but not really any pain or burning. I assume that's a good sign, but who knows. I can barely bring myself to use the Patulend once a day, but I'll see if I can muster up the nerve to do at least twice a day. This is all so frustrating! I won't give up though. Not yet anyway. Let me know how the vitamin supplements go.

     
    Old 10-07-2008, 05:53 AM   #6
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    Re: Patulous Eustacian

    Hi Robert. I just haven't had much new to report. I'm taking the drops twice a day, but I haven't noticed much relief from it. I've been so busy lately I haven't had a chance to call Dr. Di Bartolemeo for more advice. The tubes come out tomorrow, so I'll just talk to my doctor about it then. I am anxious to get these out and hopefully at least be back to where I was. I'll let you know sometime tomorrow how it went.

     
    Old 10-08-2008, 11:17 AM   #7
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    Re: Patulous Eustacian

    This is my first posting ever-but I am so pleased to find others with PET. (Or should say I am sorry there are others...)I have had it for 20 years, at times with one ear, at times with both. I have tried grommets, cartilage surgery, allerderm (sp?) injections, tranquilizers, Prilosec tabs, many things over the years. The vent tubes (grommets) have given me the most relief. I'm continually amazed with the state of the art medicine these days that they cannot find a permanent solution to PET, since it impacts one's life so drastically. I think I have developed PTSD because of years of this, never knowing when the "beast " would return, (usually when you least expect it). I see a wonderful doctor at The Michigan Ear Institute, Dr. S. Babu. He is compassionate and attentive. I also try to keep well hydrated and do my best to hold anxiety at bay. I think these may exacerbate incidences. I don't know about the vitamins and herbs and Patul-end you all have tried. Because I am on the slender side, and always have been, I eat plenty of fats in case there is a relationship of diet and low luminal fat. It is more intermittent than in the past, but enough to make life more challenging. I've had alot of depression from this, and have tried to work with those emotions through my studies of buddhism. Anyone had any experience with Dr. Dennis Poe? I see my doctor friday and am going to ask him about him. Thank you for putting your experiences out there for me to read. It all helps

     
    Old 10-08-2008, 02:25 PM   #8
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    Re: Patulous Eustacian

    Hey Crazyears...Yeah all of us feel for you. But hats off to you for giving everything a shot. You mentioned that grommets give u the most relief. How is that? I am planning to try grommets too. What kind do u have? Plastic, metal? And how long are they? You have PET in both ears?
    Keep us posted.
    Thanks
    -Kunal





    Quote:
    Originally Posted by crazyears51 View Post
    This is my first posting ever-but I am so pleased to find others with PET. (Or should say I am sorry there are others...)I have had it for 20 years, at times with one ear, at times with both. I have tried grommets, cartilage surgery, allerderm (sp?) injections, tranquilizers, Prilosec tabs, many things over the years. The vent tubes (grommets) have given me the most relief. I'm continually amazed with the state of the art medicine these days that they cannot find a permanent solution to PET, since it impacts one's life so drastically. I think I have developed PTSD because of years of this, never knowing when the "beast " would return, (usually when you least expect it). I see a wonderful doctor at The Michigan Ear Institute, Dr. S. Babu. He is compassionate and attentive. I also try to keep well hydrated and do my best to hold anxiety at bay. I think these may exacerbate incidences. I don't know about the vitamins and herbs and Patul-end you all have tried. Because I am on the slender side, and always have been, I eat plenty of fats in case there is a relationship of diet and low luminal fat. It is more intermittent than in the past, but enough to make life more challenging. I've had alot of depression from this, and have tried to work with those emotions through my studies of buddhism. Anyone had any experience with Dr. Dennis Poe? I see my doctor friday and am going to ask him about him. Thank you for putting your experiences out there for me to read. It all helps

     
    Old 10-08-2008, 02:50 PM   #9
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    Re: Patulous Eustacian

    Robert

    I really hope the supplements help you. I think they will.

    And yes, I take them (along with several other basic supplements - multi, C etc.) with breakfast, on the suspicion that they are most readily and fully absorbed at this time.

     
    Old 10-08-2008, 04:15 PM   #10
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    Re: Patulous Eustacian

    Hello fellow PETers. So, the tubes are out! It seems as though I might be back to the way things were before the tubes. I'm sure it will be a few days to heal, but already the autophony is almost completely gone! My ears still feel a little full, but not as bad as they did yesterday. I'm tired though, so this will be short.

    Robert, my doctor said I should only use the Patulend once per day. She encouraged me to give it a couple more weeks before trying something else. So, for now I guess I'll stick with it.

    - Melissa

     
    Old 10-09-2008, 08:28 AM   #11
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    Re: Patulous Eustacian

    Hi Kunal
    Thank you for responding. Back in '88, when I first developed the autophony, I went to a general ET and he had no idea what it was but suggested trying vent tubes. (I imagine everyone knows it's the same as what they insert into children for infections for drainage). It took away the autophony. To this day, I'm not sure what function they have but I believe it has to do withsomehow compensating for pressure equalization or lack thereo, so the ET doesn't open. My ETs never stayed open permanently, but would, could, for hours, days on end, until I ate, cried, or layed down, all the classic symptoms. I have a permanent opening in my left due to so many years of tubes, so as long as that doesn't close up, I let that be. I developed the same symptoms in my right ear in '98 and for anyone who has experienced that autophony, breathing, resonance, sounds in both ears at the same time knows that hell. So for many years I had tubes in both ears and that helped, but there were times that they didn't and my ETs would just "open". I've had 4 different doctors and none of them has ever been able to explain it. The grommets are plastic. They are quite small. Your ENT should have them in his office and can show you. They do it right in the office. They can numb the area. They go right through the eardrum and stay in place. They can last months to couple years before they fall out. I know for others, sometimes they help, and sometimes not. Don't know why. Some say it helps to channel out all the amplification. But they are easily removed. Hope this helps

    Crazyears51

     
    Old 10-09-2008, 09:10 AM   #12
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    Re: Patulous Eustacian

    Hello Robert
    I first went to the MI Ear Institure in Farmington Hills in '03. I was treated by Dr. Elias Michaelides, who has since left and moved to Boston. He was one of the first doctors to study this condition, and he wanted to rule out possible causes and so put me on the Prilosec and tranquilizers. No suprise to me they had no effect. He'd just returned from (?)Switzerland to do cadaver studies of the eustachian tube. He and one other doctor at that time had developed this procedure of removing a small piece of cartilage from behind my earlobe and inserting it into the nasal end of my ET. It was an out-patient procedure. He had to reinsert a vent tube (grommet) because of swelling, and after a few weeks he removed that. The perforation healed and voila, as I'm doing grocery shopping, the ET opened like always. Took me a few days to recover from that disappointment! So that didn't work, but it confirmed my experience of needing a vent tube because once that was back in, the frequency of events was greatly reduced. I started with a new doctor there, Seilesh Babu, and he was getting more referrals for this condition. He tried the Alloderm injection in both nasal-end ETs. That was '05 and although I have had many incidences since then, it's hasn't been as bad as before. I would always know when my vent tube would be clogged (ear wax, etc) or it had fallen out and the perforation had healed over, because my ET would open. That's how I always describe it, because one minute is ok, then i hear a slight click, and the symptoms are there. At this moment in time, I have a scarred perforation in my left due to years of tubes, and the right had no tube or perforation. The vent tube can create its own set of problems and as long as the incidences don't get out of control I'll try to go without. The tube would amplify my carotid and I'd hear whoosing and my heartbeat all the time, which was always unneerving. To have one more symptom to deal with was almost too much, so it's a trade-off. It's nice not to have to wonder if the tube will clogg, fall out, etc. I also have tinnitus in both ears and reduced hearing in my left. This could also be part of normal age changes, but I think it has exacerbated it. I've often wondered about ligating the ET somehow so it doesn't open, or what about the inner ear end of the ET. Dr Babu says it's more risky to go into the end with nerves and having to enter in through the back of the ear to get to the ET. He also considered lifting the eardrum and packing the area but we at the last minute conceled the surgery, as he couldn't know if it would help or not. From what I've read about Dr. Poe, I think he does the cartilage and alloderm work, haven't read that he does anything else. Anyone heard or experienced ligating the ET? Sorry this is so long. Hope it answered some of your questions. Feel free to ask anything. I'm an open book.

    Crazyears51

     
    Old 10-12-2008, 12:37 AM   #13
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    Re: Patulous Eustacian

    petboyCA:

    Is this the same Robert from [url]http://www.healthypages.co.uk/forum/forumdisplay.php?f=87?[/url] known as Yorkere? I noticed the same name and that you were from Riverside.

    I just replied to 3 PET threads over at healthypages.co.uk. I am also in Riverside for part of the year, and any local resources would be much appreciated!

    I had some questions for you that I posted and was wondering if you could give me your personal experiences.

    Anyone's personal experiences with what worked and what didn't, and what they have yet to try will mean the world to me.

    I have self-diagnosed myself over the internet as having PET after over 3 weeks of experiencing these symptoms, and I'm anxious to know what to do about it because mine is constant. The only thing that gives me relief from the autophony is lying down, and even sitting up for a good 5-10 minutes makes me dizzy. And there is intense pressure in the affected ear even when I'm supine.

    I can't imagine living for years with this and not finding a cure or effective relief! Please help me out!

    Thank YOU!!!!

    Last edited by answersplease; 10-12-2008 at 12:37 AM.

     
    Old 10-12-2008, 01:49 AM   #14
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    Re: Patulous Eustacian

    Another question:

    About the Patul-end Nasal drops.
    I was reading on The Ear Foundation Santa Barbara website
    and it seems like they are no longer manufacturing Phase II Patul-end
    and the only way for a patient to get it is to participate in their current "Phase III studies"...But then there is an order form for the product with a working link.

    So can I buy Patul-END drops right now?
    Has anyone else bought them from the website recently?
    How long did they take to ship?

    And please, if you have tried them, how effective were they? As in did you feel a decrease in symptoms? Did you feel complete relief? And for how long? How often did you have to administer drops?
    And what are the drops meant to do? Essentially, how do Patul-END work to close the tubes?

     
    Old 10-12-2008, 03:16 PM   #15
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    Re: Patulous Eustacian

    Crazyears51:

    I also want to say thanks for posting your experiences.
    I have a few questions about your recent post:

    Quote:
    Originally Posted by crazyears51 View Post
    Hi Kunal
    Thank you for responding. Back in '88, when I first developed the autophony, I went to a general ET and he had no idea what it was but suggested trying vent tubes. (I imagine everyone knows it's the same as what they insert into children for infections for drainage). It took away the autophony. To this day, I'm not sure what function they have but I believe it has to do withsomehow compensating for pressure equalization or lack thereo, so the ET doesn't open.
    So when you say that putting the vent tube in your ear took away the autophony, for how long did it take it away? And did it disappear completely for this period of time that you had the tube in? If it worked, why did you eventually remove it?

    Quote:
    I have a permanent opening in my left due to so many years of tubes, so as long as that doesn't close up, I let that be.
    So there is a permanent opening in your ear drum where the tube was removed? And does this opening still keep the autophony from occuring?

    Do you still have a grommet in one of your ears? How often does autophony occur despite the tubes? Do you think this would be as affective if you had suffered from constant symptoms of autophony (I do).

    Thanks!

     
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