Posted , 7 users are following.
I've had this for about 8 years and it's steadily getting worse. I have it in both ears and have trouble speaking due to the distraction from this. Does anyone have advice?
0 likes, 11 replies
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dianataylor linda8134
Posted
linda8134 dianataylor
Posted
Where is Dr. Poe located? I'm from central PA.
anne05078 dianataylor
Posted
Hello, not too sure if you've read my messages to other peope on this subject. I think for all of us that suffer Eustachain Dysfunction it's a problem we just have to live with. I've suffered more on than off for the past thirty years.....contracting bacterial meningitis because of it. Get your GP to put you on a course of Prednisolone, the reducing method and when they've finished try Flixonase nasules. They both helped me. I'm now using Flixonase steriod based nasal spray and it seems to be doing the trick. Horrible condition to suffer with and unless people suffered, they have no idea just how dibilitating it is.
dianataylor anne05078
Posted
I don't think i have read many of your other posts-i just got an alert on this new thread. I know i'm one of the lucky ones. My ETD was fixed with the balloon dilation. I had the opposite problem than patulous. I couldn't pop my ears. I understand how all ETD can affect your quality of life. They are finding new things all the time. Hopefully one day they will have an easy fix for everyone!
mikescape linda8134
Posted
Dr Dennis Poe Boston Children's Hospital and Massachusetts General Hospital
maureen05275 linda8134
Posted
Hi Linda. I'm sorry that I have nothing to say that will help you as I too suffer from this and so far have found no relief but I live in Australia so you may have more luck. People tend to confuse blocked tubes with patulous tubes so sometimes advice given can be the opposite of what you need. I have read that Dr Dennis Poe, already mentioned here, has a technique that may help. I was wondering if you experience the sound of your breathing and also pressure that is painful as a result of normal breathing. My experience is that this condition is not allergy related, took over a decade to get to the autophony stage and and may be related to another disease from which I suffer. The fact that it gets worse (for me also) is concerning. I am currently looking for an otolargyngologist in Melbourne to help me; most ENTs are dismissive. I will let you know if I do find any help.
anne05078 maureen05275
Posted
Hello Maureen,
I've never heard of Patulous and will google what it is.....interesting !!
linda8134 maureen05275
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Hi Maureen,
Yes, mine has gotten to the autophony stage in my left ear with little relief. It's getting worse on my right side. When both are bad, I feel like it's impossible to talk-I don't know how loud I'm speaking. It's not been fun. I'll look up Dr. Poe. Keep me updated. Thank you for responding-I've not talked to anyone else that had this. Yes, Otolaryngologists are dismissive.
anne05078 linda8134
Posted
Hi again, I sometimes suffer the same whee I can hear my own voice an heart beating too. I always thought and felt likenit's un-equalisation of the air pressure. I suffer mostly from blocked ears. Sounds like yours is harder to treat. Hope it gets resolved for you as I know how horrible these things are.
dizzyear linda8134
Posted
Hi Linda,
Really sorry to hear you suffering from this. While I don't have PET, I do have a different condition that causes the Autophony symtpoms in my left ear. I have found the best thing to do is avoid loud environments where I would need to raise my voice. Hope you do find a Dr that can help.
kentlily linda8134
Posted
I've had this disease for 20 years. No doctor has been able to cure it in anyone who has had it. I look at groups all the time and a lot of people who get surgery end up worse than when they came in. So I don't recommend it at this time.
I have 3 big things I do to control it. Try these to see if they help you. First thing is to do my breathing exercise. Do it every hour of the day if you have to. Get a watch and lay down on the ground. Breath in and out your mouth 5 minutes, then breath in through your nose and out your mouth 5 minutes and finish by breathing in and out your mouth 5 minutes. That's it. With this disease you have to learn to be a mouth breather. I only breath in and out my nose when I sleep at night.
Second. Take one teaspoon of iodized salt and mix it into water or juice, about 6 oz. Drink it. The iodine will help close the eustachian tubes. Do that about 3 times a day if you can handle it. Do it every 2 or 3 hours.
Third. Buy Patulend. Look it up on google. Learn to get it into your eustachian tube properly and it's worth it. I like to sit in my car seat when using it. I lay back at a 45 degree angle, put the drop in my nose, lean my head towards the back of my shoulder, let my head sag, feel the drop going back into the tube, the lay down on my side and look up at the sky while moving my jaw open and close, then I sit up straight and snort the drop into the tube. It works for me and closes it.
Other than that learn self massage, some tai chi, don't run or do any cardio other than brisk walking, don't do heavy exercise or any thing that will make your tube open.