Just dx'd with patulous drive-me-crazy eustachian tube - Hearing Disorders Message Board

OhMyEars · 12-03-2008, 08:03 AM

Finally -- an answer to all this weird poppety-pop-pop-pop junk my ears have been putting me thru the last 2 years. But no cure? Not many treatment options? You've gotta be kidding me. There are too many of us suffering for there not to at least be better treatment options. My ENT said I need an ET transplant, but is otherwise unable to help me. Gee, was that even helpful?

Short of going completely cookoo from the constant autophony and swooshing and breathing and heartbeat sounds going on in my head, I'm setting out to find ways to make it better. I've read quite a bit on these boards, I hear everyone's frustrations, so I know I'm not alone. This disorder has brought me to my knees in tears on more than one occasion.

So this is the deal. If anybody has any "fail safe" methods thru personal experience that make this thing any better, I'm all ears. Yes, I really did have to say that.

Personal Experiment #1: This week I have set out to completely avoid the diuretic TEA. I'm from the south, love my iced tea, and drink a lot of it. So far, I've gone without it for one whole day and guess what? No PET problems. Do I think the two are related? Too soon to tell. Normally, I can go days and days and days and get absolutely no relief from PET, making me inch up the walls little by little. Then suddenly, I get an entire day -- 24 whole hours! -- with no PET whatsoever. Anybody else experience this?

It might be interesting to note that I've also got MS, and I've read that sometimes the two can go together due to muscle weakness. Anybody else have any neurological and/or muscle diseases? If so, please share. Maybe we can figure this out by piecing things together. It's worth a shot.

tigersaint · 12-03-2008, 09:35 PM

Hi OME-- Good post; gotta have a sense of humor with this stuff... I have suffered with what I *think* is Patulous Eustachian Tube for over nine years now-- to say that life has been Hell at times would be an understatement. I say i think it's PET because it hasn't actually been diagnosed as such (even though i've been to a PET specialist who said it *may* be PET(?)) but it is definitely a Eustachian Tube problem of some sort. I've been to over a dozen docs, including the aformentioned specialist, a few ENTS and some other various docs-- everything seems to look normal, my hearing's fine-- but it's the popping when i swallow and try to talk (and occasional autophony) that is torture... I don't have all the classic symptoms of PET- my symptoms don't go away when i flip my head down-- but everything else seems similar. I've tried tubes twice, with no luck. Like you, I'm from the South-- but my weakness is coffee. I have tried to quit umpteen times (and am currently in the process of quitting again, ha) but some days my ear feels so lousy and makes me so fatigued that i have to have the coffee to function, and so the cycle continues. I am going to really do it, though, since it's easier to sleep when i haven't had caffiene, and sleep is the only thing that helps my ear feel better. I would also be curious to hear if anyone else has had luck with other treatments or ideas. Good luck!

Jason

answersplease · 12-04-2008, 12:01 AM

OhMyEars and tigersaint,

I've had PET for 3+ months now, and I have been officially diagnosed. It used to be constant, autophony (voice, breathing) and popping upon swallowing, dizziness when standing or sitting up for too long, pressure in ears, and neck pain. The only thing that stopped it was laying down, or putting my head between my knees. However, over time the symptoms seemed to have lessened. Now I only get 2-3 instances of autophony a day lasting anywhere from minutes to hours at a time, but I've also acquired what I think is mild autophony in the other ear (It used to only be unilateral)...

PatulEND drops, Premarin and SKII didn't seem to do anything for me. In fact the PatulEND drops made it autophony come on, and last longer.

I have discontinued use of these products. I now only drink Jai Wei Gui Pi Tang tea, and take a variety of vitamins daily and I don't know if this has helped to lessen the frequency of my symptoms or not...it's hard to tell...but Vitamins might be worth trying.

I have also stopped drinking caffeinated beverages. And stopped taking birth control pills which are said to be a potential cause of PET. I don't know if this has helped either.

OhMyEars · 12-04-2008, 07:11 AM

Quote:

Originally Posted by petboyCA

OhMyEars:

Was your ENT serious when a Eustachian Tube transplant was recommended? If so where is this being done?

Yes, he was quite serious. I even asked him twice because surely I heard him wrong. Unfortunately, he told me he didn't know of it being done anywhere which, again, I found extremely helpful. I Googled this, and ironically, the very first thing re: ET transplant that came up with this post! LOL (Didn't find much on it.)

Quote:

My own personal experience is with the use of PatulEND nasal drops, from the Ear Foundation.

Are these OTC or do you need a Rx? What is the main ingredient that makes them work? Are you still using them with success?

tigersaint · 12-04-2008, 09:33 AM

Quote:

Originally Posted by petboyCA

My own personal experience is with the use of PatulEND nasal drops, from the Ear Foundation. When used properly, so the ETs are actually reached by application, I've had instant relief lasting at first from 4 to 8 hours, and after ~ a month of successful use, lasting 1.5 to 3 days. Nothing else I've tried has done anything at all. But it's hard to learn to use 'em correctly...

Robert

i've also tried the patulEnd drops-- but with no luck... Maybe i wasn't using them correctly, but i actually met with Dr. Dibartolomeo (the inventor of patulEnd) and even though he showed me himself how to use them, they didn't work for me.. He was a great guy, though, and very sympathetic since he is (was?) a sufferer himself-- but ultimately he wasn't sure if PET is what i have.