Patulous Eustacian Tubes-Help!

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I am a 33 year old female who has been struggling with PET for about five years now.  I have tried gum chewing, saline, estrogen, patulend, and tubes with no success.  I am now on my third ENT, who wants to do a nasal endoscopy and refer me to a neurotologist as well.  A few questions.  What will the neurotologist do?  What happens if my ears aren't doing it when I have the nasal endoscopy?  Any other temporary relief ideas (besides head between legs or laying down, because I can't do that at work)?

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  • Posted

    How did the PET begin for you? I'm getting symptoms for the past 3 days after a middle ear infection. I have constant autophony. I'm petrified that it is pastulous eustacian tubes and hoping that it's just a part of the recovery process.
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    • Posted

      I lost a lot of weight (like went from 155lbs to 108lbs) when my mom was in hospice.  It happened in like a month and they think that is what did it.  I truly hope you don't have it, because it is the most isolating, horrible issue to live with daily.  I don't want to be around people when it is happening and it even messes with my breathing because I find myself trying to hold my breath so I don't have to deal with the noise.  I don't know how that works with inner ear infections, but I don't think from all I have read that PET could come from that.  I may be wrong though.  Have you spoken with your doctor about it?
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    • Posted

      Thanks for your reply. It sounds awful, I really can sympathize with you - I pray you find a way to cope with this condition. Have you tried patulend drops? Throughout my crazy few days of researching this condition I have come across a lot of people that have benefitted from using these drops.

      I went to my ENT doctor today. He did a tympanograph (or whatever it's called) and found that there is a lot of pressure in my left ear (which is where I have the PET symptoms). He said that the tympanograph suggests that I don't have PET. he apparently sees a retracted ear drum which means my eustacian tube is congested. He told me to take decongestant nasal spray and antihistamines. I don't agree with what he says because I feel that my eustacian tube os fully open ALL the time. The symptoms don't go away when I lie down or when i put my head down either. He's called me back tomorrow for further tests so we'll see how it goes. Xx

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    • Posted

      With PET the symptoms will go away when you lay down, due to a change in the pressure.  So that's actually a good thing that it's not, because it means it isn't PET.  Hopefully the decongestant/antihistamines will help.  Sadly, I have tried Patulend, an array of estrogen and steriod combos, and even tubes with no relief.  So the new ENT I am seeing said there was one other thing he wanted to try (he wanted to do a little more research) before I have surgery.  I don't care what I have to do, I just want it to stop!
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    • Posted

      Hi betsywalter,

      I went to another ENT who looked at my eardrum and saw it moving with my breathing and therefore concluded that I do in face have PET. I'm so devastated right now can't eat or sleep. It tends to get better in the evenings - my autophony is worse when I make 'mmm' or 'nnn' sounds. I don't know whether mine is bad because I have it pretty much all day. I'm scared to try patulend for fear it'll clog me up and I've heard it's painful to use.has yours got progressively worse? Is there a chance it will expand from one ear to another? I'm just terrified that I'll have to cope with this for the rest of my life. I've had for over a week and it's driving me nuts.

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    • Posted

      You don't have to worry about it "spreading".  At least for me, I lost too much weight at once (my mom died and I was depressed), so i lost the fat in my eustacian tubes that gave it the ability to close. PET means the tube stays open all the time, or more often than not. So there is no correlation between the two tubes that I am aware of.  Patulend did nothing for me, although I have heard of people having great results.  It didn't hurt.  In all honesty though, even if it had, if it worked I would have gladly gone through the pain.  I am at work right now and trying really hard not to cry because both of my ears won't stop doing it.  I truly wish you luck, this is a miserable way to live life.
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  • Posted

    Have you all searched the Facebook page for this? There are so many people on there that have this and some have tips to help. Just thought I'd recommend it
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  • Posted

    I am much older than you but I have PET and if you have found anything to help please let me know
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    • Posted

      I have had PET for about a year, saline spray will work temporarily(tilt your head to the affected side spray the saline, then pinch your nose while trying to inhale through your nose to suck the saline into the tube) I have gotten the best results from: limiting caffeine, I drink an herbal tea called Jia wei gui pi tang, and using patulend drops(they burn like crazy but will eliminate my symptoms for days at a time)
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  • Posted

    hopefully you have found some relief from your PET, here are the things I have done to limit my symptoms: limiting caffeine, I drink an herbal tea called Jia wei gui pi tang, and using patulend drops(it can be difficult to get the drops into the tube and they burn like crazy but will eliminate my symptoms for days at a time)
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  • Posted

    Hi Betsywalter.  I have just seen your message.  I am a sufferer like you.  Have you found any relief in the past 12 months?
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