Discussions By Condition: Ear conditions

Patulous Eustachian Tubes

Posted In: Ear conditions 11 Replies
  • Posted By: yorkere
  • September 23, 2008
  • 04:06 AM

Is there anyone on this Forum who is experiencing Patulous Eustachian Tube (PET) dysfunction?

I've been afflicted with this condition for about a year & a half now; seen several ENT Doctors, and am currently taking medication, with no real changes....I'd like to hear from any others who are trying to cope with this condition...

TIA!

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  • For information, here is a recent journal article abstract regarding surgical intervention to resolve PET and as well, provides some useful information on it's cause: Diagnosis and Management of the Patulous Eustachian Tube Otology & Neurotology. 28(5):668-677, August 2007.Poe, Dennis S. Abstract: Objective: The patulous eustachian tube (ET) seems to be caused by a longitudinal concave defect in the mucosal valve at the superior aspect of its anterolateral wall and causes troublesome autophony of one's own voice and breathing sounds. Patulous ET reconstruction was evaluated to analyze whether submucosal graft implantation to fill in the concavity within the patulous tubal valve may produce lasting relief of symptoms. Study Design: Prospective trial. Setting: Tertiary referral center, ambulatory surgery. Patients: Fourteen ETs in 11 adults with 1 or more years of confirmed continuous patulous ET symptoms refractory to medical care. Intervention: Endoluminal patulous ET reconstruction was performed in 14 separate cases using a combined endoscopic transnasal and transoral approach under general anesthesia. A submucosal flap was raised along the anterolateral wall of the tubal lumen up to the valve and mobilized superiorly off of the basisphenoid. The pocket was filled with autologous cartilage graft or Alloderm implant, restoring the normal convexity and competence to the mucosal lumen valve. Main Outcome Measure: Autophony symptoms were scored as 1) complete relief; 2) significant improvement, satisfied; 3)significant improvement, dissatisfied; 4) unchanged; or 5)worse. Results: All 14 cases reported immediate complete relief of autophony. Results with an average follow-up of 15.8 months are as follows: 1 (7%) case had complete relief; 5 (36%) had significant improvement, satisfied; 7 (50%) had significant improvement, dissatisfied; and 1 (7%) was unchanged. There were no complications. Correlation between patulous ET and other conditions was strongest with previous tubal dysfunction. Autophony of voice, but not breathing sounds, was also found to be experienced by 17 (94%) of 18 patients with superior semicircular canal dehiscence syndrome and could be easily mistaken for patulous ET autophony. Conclusion: Patulous ET seems to be caused by a concave defect in the tubal valve's anterolateral wall. Submucosal graft implantation to restore the normal convexity to the valve wall seems to provide lasting relief of symptoms. Long-term study is needed. It is important to differentiate between the autophony of semicircular canal dehiscence syndrome and patulous ET. (C) 2007 Otology & Neurotology, Inc. Note: I do experience breathing sounds, but infrequently (about 2 or 3 times) almost ALL autophony is voice, so far.I'd like to hear from others who have this condition!
    yorkere 5 Replies
    • October 12, 2008
    • 00:04 AM
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  • I got patulous eustachian tubes about 2 months ago (also had them in 1999, but they went away for a while???).I have managed to stop it by going off the pill and changing my diet.They say that weight loss can cause patulous eustactian tubes, but mine was actually caused by a change in diet. So have gone back to how i was eating before and my ears have been heaps better.
    Anonymous 42789 Replies
    • November 6, 2008
    • 05:38 AM
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  • I got patulous eustachian tubes about 2 months ago (also had them in 1999, but they went away for a while???).I have managed to stop it by going off the pill and changing my diet.They say that weight loss can cause patulous Eustachian tubes, but mine was actually caused by a change in diet. So have gone back to how i was eating before and my ears have been heaps better.PET:Thanks for your reply!Can you describe your current diet? As well, what was the change in your diet that caused the onset of symptoms? Did your diet change eliminate your condition, or just mitigate it?TIA!Robert
    yorkere 5 Replies
    • November 7, 2008
    • 05:19 AM
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  • I have this EXACT same thing.If i go on a healthy diet, with lower calories i get Patulous Eustachia Tubes (drives me crazy). This is when i eat more vegetables, salads and fruit etc, and no breads or sweets or chocolate!If i want my ears to get better, all i need to do is binge on bread and chocolate, and they are fine again.I know this is probably not typical, but its interesting that other people get the symptoms with diet change.
    Anonymous 42789 Replies
    • August 25, 2009
    • 10:08 PM
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  • In 2002 I first began having the symptoms of this condition with my pregnancy. It was horrible then but seemed to get better after I had my baby. I hear my breathing in my ears and also my heartbeat sometimes. It occurs of and on and sometimes lasts a few days. Sometimes it makes me feel like gagging for some reason. I finally decided to look it up and see what the heck was wrong with me. It is good to know that it has a name and other people have this too. I'm just glad it isnt all the time for me. It's just off and on. It is especially bad when I exercise or go on a diet. I would rather hear my breathing than be fat though lol.
    Anonymous 42789 Replies Flag this Response
  • Same happens to me. When I try to get in shape and get on a low calories diet I get patulous eustachian tubes. I have seen 2 doctors and they both recommended different remedies. Nothing is working for me...anyone as any ideas?
    diogop 3 Replies
    • September 23, 2010
    • 08:52 PM
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  • In 2002 I first began having the symptoms of this condition with my pregnancy. It was horrible then but seemed to get better after I had my baby. I hear my breathing in my ears and also my heartbeat sometimes. It occurs of and on and sometimes lasts a few days. Sometimes it makes me feel like gagging for some reason. I finally decided to look it up and see what the heck was wrong with me. It is good to know that it has a name and other people have this too. I'm just glad it isnt all the time for me. It's just off and on. It is especially bad when I exercise or go on a diet. I would rather hear my breathing than be fat though lol.I have the same exact thing when I exercise or eat less! It is a horrible feeling and especially annoying if I am working out. Interestingly enough, it usually goes away if I eat a meal and temporarily goes away if I bend over (with head upside down) or lay down for a while (which is not always convenient if I am out or at work for the day). I am with you though, I would rather have occasional "autophony" than be over weight. It is nice to know what this is and other people have similar symptoms.
    Anonymous 42789 Replies Flag this Response
  • Newly diagnosed with this condition. To me, the autophony is just horrible. I would gladly gain weight just to get rid of symptoms. I have only had it a short while. Does it ever just go away on its own? I have ordered some drops (Patul End). Not sure what to expect. I have young kids and am worried about my quality of life.I think mine could be related to TMJ problems (been told by a dentist I have this but never had any problems until now). Anyone experience relief with TMJ relaxation exercises?
    Anonymous 42789 Replies
    • August 15, 2011
    • 00:27 AM
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  • Newly diagnosed with this condition. To me, the autophony is just horrible. I would gladly gain weight just to get rid of symptoms. I have only had it a short while. Does it ever just go away on its own? I have ordered some drops (Patul End). Not sure what to expect. I have young kids and am worried about my quality of life.I think mine could be related to TMJ problems (been told by a dentist I have this but never had any problems until now). Anyone experience relief with TMJ relaxation exercises?I have PET, TMJ and Meniere's Disease and have had Autophony my entire life...or at least since middle school when I remember first being so annoyed with it in running track in school that I repeatedly complained to my parents. (I'm 37 now) Back then my PET symptoms only seemed to occur during very strenuous physical activity and only in one ear, but over the years it has evolved into something that happens every single day as soon as I lift my head from my pillow and in both ears. I've learned how to conveniently hold my breath during conversations, how to press my tongue to change the pressure before I speak so I can have a mini break in the autophony for a few words and how to "sniff" to temporarily relieve it as well (which also lasts for a couple words). The only time I have relief without actively doing some weird maneuver, is when my head is below my heart. All other times, it's either fully causing autophony or it's going in and out every couple of words. If it didn't come and go mid sentence, that would certainly help quality of life. Yes, there is absolutely a quality of life issue and I've suffered socially because of it. People think I'm super shy because I talk quietly or miss their words, or my volume drops unexpectedly. I have tried PatulEnd for years without really any reportable results, but I suspect my condition is so severe that I might be a special case. The directions say to use one or 2 drops, but I've been so upset and annoyed that I've used about 5 drops every 20 minutes and after about 3 hours of that, I noticed some relief and didn't have autophony for the next 2 hours or so...HOWEVER, what I ended up with was "plugged" ears. Meaning the "plugged" sensation you get when you go up in elevation and can't "pop" your ears. So, while I couldn't hear my own voice or breath "in my ears", all external sounds were muffled and I felt like I needed to plug my nose and blow or yawn or something to unmuffle it. I think that new symptom was worse only because I'm at least used to living with the Darth Vadar sound in my head all day.I vow that when I die, I'm donating my head to science for them to figure out what the heck is the problem and how to fix it for good!
    Anonymous 42789 Replies
    • October 8, 2012
    • 05:00 PM
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  • I am the originator of this thread (yorkere)...Robert E. Yorke.after ~2 years of use of the PatulEnd, it did rid me of this affliction...it takes awhile to learn how to effectively apply the PatulEnd, but eventually you can learn how to get to the Eustachian tubes with it...You MUST be persistent; the stuff WILL work for you...if anyone needs help with the technique, look me up on Skype...I live in Riverside, CA...
    yorkere 5 Replies
    • October 26, 2012
    • 08:22 PM
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  • Hello YorkereThis is a sufferer from PET from Spain.I haver received the PATULEN drops and dont know how to apply them.Please could you help me? thank youI am the originator of this thread (yorkere)...Robert E. Yorke.after ~2 years of use of the PatulEnd, it did rid me of this affliction...it takes awhile to learn how to effectively apply the PatulEnd, but eventually you can learn how to get to the Eustachian tubes with it...You MUST be persistent; the stuff WILL work for you...if anyone needs help with the technique, look me up on Skype...I live in Riverside, CA...
    marjaca 1 Replies
    • August 18, 2013
    • 09:08 PM
    • 0
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