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Medical Forum / Diseases and Disorders / Tinnitus / June 2005Patulous eustachian tube treatment?
Hello, I think I have patulous eustachian tubes. I feel autophony most of the time, and I'm becoming so stressful. I have gone to a lot of doctors but they did not help me because. I would like to know where I can find information and if anyone could share with me possible treatments, COuld you please use simple English. What is autophony? Tinnitus is a pain in the neck Elly's Tinnitus Resources http://www.eebee.net/ http://www.tinnitusrelief.net/ For email: elly at eebee.cjb.net >Hello, > [quoted text clipped - 5 lines] >I would like to know where I can find information and if anyone could >share with me possible treatments, >COuld you please use simple English. >What is autophony? ............... Autophony is abnormal hearing of your own voice or breathing. Probably the most common cause is a Eustachian tube problem. smn There are several approaches. One is to get estrogen to the area to build up the membraes Another is to deliverately cause rhinitis medicamentosum - over use of nose drops and get a secondary swelling to the area. Another is to surgically inject teflon into the tube opening to close it. Murray Grossan, M.D. http://www.ent-consult.com I have seen references to PET being caused by oral contraceptives and pregnancy. Does anyone know if there is a connection to Hormone Replacement Therapy? One person mentioned estrogen directly applied to the ears. So do those of us with PET need more estorgen or less? FJH > Hello, > [quoted text clipped - 5 lines] > I would like to know where I can find information and if anyone could > share with me possible treatments, Hi Rita I was told 5 years ago that I probably had patulous eustachian following a blow to the ear and side of my head. I also have autophony continuously from that moment on, and I can truly sympathise with just how annoying it is - getting anyone to believe you can be just as annoying. For 5 years Drs have messed about with checking my eustachian tube with every test in the book, I even had an op to investigate the middle ear - but they found nothing abnormal. They've now decided that the blow to my ear must have caused a hairline fracture of the temporal bone which has caused a tiny opening above one of the semicircular canals - apparently this can have the same effect. You don't mention how your condition started, if you've had any head injury no matter how minor (I'm told that even sudden changes in air pressure, or a violent sneeze can cause this condition), I'd mention the possibility to your Dr if you have no luck with the eustachian theory. Can you relieve the symptoms by changing you head position - lowering it for example? Do your eyes feel as if they flinch when you speak or hum? Two sure signs of this condition. Anyway, good luck and I hope you get sorted. Chris christopher dot owen at btopenworld dot com Hello, Thank you all for your answers. I can't understand when and why this has started. I have the feeling to ear my own voice and my own breath louder inside my head. When I have this I "sniff" continuously to get relieve but it starts again in a few seconds. Sometimes, after lunch it gets better. Lying down and turning my head to the side I have this it gets relieve too. I can not understand in which conditions this starts, but the thing is that I don't have this always. It's worse in the mornings, but sometimes it lasts all day long. I have maid a septoplasty (an operation to correct a deformity of the nasal septum) , because my doctor thought my septal desviation was the cause. But i still have this, and my doctor can not understand. It's getting really stressful and annoying. That's why I have tried to find help with persons that have this too. Because maybe someone has other solutions, and experiences that could share. Regards Hello, Thank you all for your answers. I can't understand when and why this has started. I have the feeling to ear my own voice and my own breath louder inside my head. When I have this I "sniff" continuously to get relieve but it starts again in a few seconds. Sometimes, after lunch it gets better. Lying down and turning my head to the side I have this it gets relieve too. I can not understand in which conditions this starts, but the thing is that I don't have this always. It's worse in the mornings, but sometimes it lasts all day long. I have maid a septoplasty (an operation to correct a deformity of the nasal septum) , because my doctor thought my septal desviation was the cause. But i still have this, and my doctor can not understand. It's getting really stressful and annoying. That's why I have tried to find help with persons that have this too. Because maybe someone has other solutions, and experiences that could share. Regards I have been having these same problems for 4 years. Long story short, I was just diagnosed with PET last week. While it was wonderful to FINALLY have an answer to what was causing the problem, the novelty has worn off. Reality is setting in and I'm having a difficult time adjusting to the fact that I am going to go through this every day for the rest of my life. I'm 32, I already have a vision problem (I'm legally blind) and my hearing was what I relied on. Yes, my hearing is still fine, but I just can't get over how annoying this is. It's actually pretty depressing. My biggest problem is the autophony... I have very little pain. I already tried the tube before we even knew what the problem was and that didn't work at all. My new doc has informed me that there is really nothing that they can do that has proven to be a successful treatment. Oh yeah, when my husband asked if it would go away, he did say, "Yes, it could, if she gains weight." and drink plenty of water....No confirmation on exactly how much weight though. Although I weigh a very normal weight... did I mention I'm a recovering anorexic???? Oh, the irony... So, what now? I feel so hopeless. He told me if I get to the point where I want to jump off a bridge, come see him... but who has this and DOESN'T want to jump off a bridge every day??? Not that I would do that of course, but you know what I mean. This is making me crazy. How do you guys manage? I have 2 small children (which I'm told is how I got this... losing the baby weight from the first child) and when the baby cries, it's piercing. I have such a difficult time giving them baths because the sound of them playing and the water running and the echoes of the small bathroom are too much. This is turning my life upside down... I just can't believe this is it.... Did you guys feel like this? How did you move on and just accept it? Thanks for listening... doctors, friends, family.... no one gets this unless they really have it. They just don't get how ANNOYING it is. Take Care, Raine Hi Raine, Could you consider the idea that it is all related to a muscular problem - in the neck and shoulder area. My daughter started showing signs of tinnitus after the birth of her fourth child, but that was mainly when she was breast feeding or when she had to pick him up off the floor. I re-arranged her seating position with extra pillows to hold the weight of the child. That made a big difference. Can you get a massage from a trusted therapist? That will ease the initial pressure. It will also confirm the muscle tension. Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ For email: elly at eebee.cjb.net >I have been having these same problems for 4 years. Long story short, I was >just diagnosed with PET last week. While it was wonderful to FINALLY have [quoted text clipped - 33 lines] >Take Care, >Raine At this point, I'm willing to consider anything! LOL! I do have some minor issues with my neck, but I never really paid it much mind. I sit at the computer a lot and being that I have poor eyesight, I do a great deal of "leaning in" and straining. I get a lot of headaches so the doctor wanted to send me for a neck x-ray next month so I guess we'll see what they say - I haven't seen her since this last diagnosis. I neve thought the 2 problems could be related. But, then again, I never in a million years thought I'd hear that giving birth and losing weght could cause my ear problems. So, who knows! By the way - forgive me for these naive questions, but since I have PET, do I have Tinnitus? I just learned about PET last week so this is all new to me. Not much info on the web. The doc told me it was extremely rare and that must be true because I can't find much stuff about it.... just some posts like these. Are they related somehow or is PET a form of Tinnitus? Just curious. I'm trying to learn as much about this as I can. Thanks for your reply. Raine What is Tinnitus? It is a sound when can hear when there is no external sound present. Do you hear any sounds? Neck issues, computer, headaches, etc, they all point to neck and shoulder muscle strain. Can you get a massage from a trusted therapist? That will ease the initial pressure. It will also confirm the muscle tension. Have alook at http://eebee.net/TinnitusIsaPainintheNeck.shtml email me if you want to. Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ For email: elly at eebee.net >At this point, I'm willing to consider anything! LOL! > [quoted text clipped - 17 lines] > >Raine I have been having these same problems for 4 years. Long story short, I was just diagnosed with PET last week. While it was wonderful to FINALLY have an answer to what was causing the problem, the novelty has worn off. Reality is setting in and I'm having a difficult time adjusting to the fact that I am going to go through this every day for the rest of my life. I'm 32, I already have a vision problem (I'm legally blind) and my hearing was what I relied on. Yes, my hearing is still fine, but I just can't get over how annoying this is. It's actually pretty depressing. My biggest problem is the autophony... I have very little pain. I already tried the tube before we even knew what the problem was and that didn't work at all. My new doc has informed me that there is really nothing that they can do that has proven to be a successful treatment. Oh yeah, when my husband asked if it would go away, he did say, "Yes, it could, if she gains weight." and drink plenty of water....No confirmation on exactly how much weight though. Although I weigh a very normal weight... did I mention I'm a recovering anorexic???? Oh, the irony... So, what now? I feel so hopeless. He told me if I get to the point where I want to jump off a bridge, come see him... but who has this and DOESN'T want to jump off a bridge every day??? Not that I would do that of course, but you know what I mean. This is making me crazy. How do you guys manage? I have 2 small children (which I'm told is how I got this... losing the baby weight from the first child) and when the baby cries, it's piercing. I have such a difficult time giving them baths because the sound of them playing and the water running and the echoes of the small bathroom are too much. This is turning my life upside down... I just can't believe this is it.... Did you guys feel like this? How did you move on and just accept it? Thanks for listening... doctors, friends, family.... no one gets this unless they really have it. They just don't get how ANNOYING it is. Take Care, Raine Do you have any allergies? If you are allergic ot cat, stroke the cat and this will swell the nasal tissue. Or you could use Afrin to cause Rhinitis Medicamentosum - where the nose is congested from the Afrin rebound. Speak to your doctor about this. Murray Grossan, M.D. http://www.ent-consult.com Nope, no allergies. I'll run that by my doctor. Not sure I understand this, though because my ears feel "full" and I hear my voice in my head even when I'm congested. In fact, sniffling sometimes makes it start. I don't know. The Pennsylvania doc also told me that I had to drink plenty of water. THIS could be my problem as I am most likely dehydrated all the time. I am not exaggerating when I tell you that I'm lucky if I drink 1/2 cup of coffee and 1 full glass of liquid a day. This is probably a good explanation for the headaches too! I'm working on drinking more fluids so hopefully.... HOPEFULLY, that will swell the tissue around the tube and close it up a bit. Raine hi, the person to see for patulous eustachian tube is dr dennis poe in boston mass. he has solved p e t for several people. he is a wonderful, smart, careing doctor who can do what no others can....he is my life saver! good luck > hi, > the person to see for patulous eustachian tube is dr dennis poe in boston > mass. he has solved p e t for several people. he is a wonderful, smart, > careing doctor who can do what no others can....he is my life saver! > good luck i think your suggestion is the best so far. it is *who* is performing the treatment that counts more than what kind of treatment performed. FP ================================= Libby, I have been looking for you! We met on the other site, and I have wondered how you made out with Dr. Poe! To everyone else, I also have PET, and I do know how unbearable it is. BUT -- I have found a cure that works for me! Libby, I did call Dr. Poe, and he sent me an introductory letter that had some information in it that I have tried...I don't know how much I can say without violating any rules here, but at this point, I won't even need to see him! I have found a simple way to stop PET!...I'd want to tell everyone about it, but can I, according to the rules here?...It's a product you can buy. I no longer suffer every day! LynneR This is an open forum. There are no rules. Anyone can say anything they like. It is not monitored. Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ >Libby, I have been looking for you! We met on the other site, and I have >wondered how you made out with Dr. Poe! To everyone else, I also have PET, [quoted text clipped - 5 lines] >tell everyone about it, but can I, according to the rules here?...It's a >product you can buy. I no longer suffer every day! LynneR Well, then I am anxious to share the cure that has worked for me! It is a nose drop made by a Dr. DiBartolomeo in California. It costs $50 plus $10 shipping, but that is nothing to pay for the relief it brings from PET. It burns a bit when you first use it (the literature says it's supposed to..), but the irritation it causes makes the eustachian tube close! It takes a few days to get the hang of positioning your head so the drops hit the ET, but once you figure that out, relief is immediate, and for me, lasts all day. I have been using it for 2 weeks and I feel like a new person. (By the way, just so you know this is legit, this product was recommended by Dr. Poe, in Boston). It's really like a miracle drug for PET, and the wierd things is, no one seems to know about it! I hope everyone with PET tries this to see if it will work for them. The # to call is 805-569-1111 (leave a message -- they will get back to you). You can also e-mail them at earfdn@aol.com. Good luck! LynneR Dr Dr. DiBartolomeo of Santa Barbara is a highly respected otologist. Glad he was able to help. Murray Grossan, M.D. http://www.ent-consult.com >This is an open forum. There are no rules. Anyone can say anything >they like. It is not monitored. There are so rules. The charter of this newsgroup forbids commercial posts. Susan Whose rules? Where is the charter? Tinnitus is a pain in the neck Elly's Tinnitus Resources http://eebee.net/ >x-no-archive: yes > [quoted text clipped - 4 lines] > >Susan
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