Just dx'd with patulous drive-me-crazy eustachian tube [Archive]

OhMyEars

12-03-2008, 11:03 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. ;)

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tigersaint

12-04-2008, 12:35 AM

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, 03:01 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.

petboyCA

12-04-2008, 03:35 AM

OhMyEars

12-04-2008, 10:11 AM

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.)

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, 12:33 PM

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.

petboyCA

12-04-2008, 04:43 PM

i've also tried the patulEnd drops-- but with no luck... Maybe i wasn't using them correctly, but i actually met with Dr. Di Bartolomeo (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.

tigersaint:

When he showed you how, did your ears ache? If not, then it is possible that the drops did not reach the ET. Did your ears ever respond when you tried to use them yourself? I think that if the ET is not wide open at the time of application, that there is little response of the ear in the form of that characteristic ache/burn/sting. It does take some practice before you can get the positioning of the body & head right. Dr. Di Bartolomeo told me to sniff briskly only ONCE to avoid flowing the drops right past the ET from the velocity imparted by too much or too forceful sniffing. The ET is ~3 inches back from the nostril, so it's hard to get to it properly. I went through about 2 bottles before I began to have some success.

And OhMyEars; the Ear foundation (Dr. Joseph Di Bartolomeo) is the only source for PatulEND, and does not require a prescription. I'm still successfully using them, but have laid off the last few days to see whether a simultaneous ET blockage condition may be affected. Audiology tests have indicated that I have some "Tympanic retraction" or 'negative pressure" at my eardrums. I haven't used the drops for 3 days now, but will probably use 'em today. Haven't had any bursts of autophony, but when my ears start snapping on me (while swallowing or drinking) I use 'em to head off any problems.

I'm sorry to hear that an ET transplant is a fantasy...!

Robert

answersplease

12-05-2008, 01:41 AM

OhMyEars:

About the transplant...is there really such thing as ET transplants? Eustachian tubes are sort of necessary so I don't see that anyone living could donate one...and if so do they really harvest Eustachian tubes from cadavers? I've never heard of this before.

OhMyEars

12-05-2008, 10:49 AM

I'm sorry to hear that an ET transplant is a fantasy...!

I think I'd rather have other fantasies worth my time than this crazy thing, wouldn't you? The whole thing is just so bizarre, and you'd think somebody would have come up with a solution by now.

Robert, thanks for the info re: the drops. Would you say that you truly get benefit from them, or is it more of a placebo effect (which really doesn't matter if it works, huh)? How long have you been using them?

I've gone without tea now for several days, and it hasn't been pretty. My, how the body complains when it doesn't get what it's used to! I'm still getting the PET thruout the day, but maybe it hasn't been quite as bad. I'll still need to continue this experiment a while longer before I'm convinced there's a correlation between the two.

petboyCA

12-05-2008, 10:23 PM

I think I'd rather have other fantasies worth my time than this crazy thing, wouldn't you? The whole thing is just so bizarre, and you'd think somebody would have come up with a solution by now.

Robert, thanks for the info re: the drops. Would you say that you truly get benefit from them, or is it more of a placebo effect (which really doesn't matter if it works, huh)? How long have you been using them?

OhMyEars:

This PET situation is quite monstrous; for many people, the thing is unstoppable because they cannot find any source of help to battle the thing....the PatulEND is NOT a placebo, and when used properly so that the ETs are reached, the relief is essentially immediate. Some have told me it does them no good, despite their being able to reach the ET. But for me and most others I've heard from, the product does work. But it IS HARD to apply correctly.

I've been using PatulEND since 8-13-08, when I went to the Ear Foundation, but my use was relatively intermittent for awhile because I had such a tough time in using the drops to get at the ETs, and I was discouraged about it. Then I began trying harder on 10-17-08, and used 'em every day regardless of whether there were symptoms present. I did that for almost a month. I waited 3 days(during which there were no symptoms), I noted that the pattern of symptoms had changed. Since then there's been no sudden, instantaneous slips into autophony and the popping/snapping events have become less frequent (they still occur, but not as much, at this time). I'm now using it when the popping starts, which makes me nervous, so if nothing much occurs during a day, then I won't use it. I'll do this maybe for awhile, to see what happens, then maybe I'll go back to every day again to see if I can come closer to resolution

The idea behind use of the stuff is that if edema (swelling) can be induced frequently enough, that the ET will assume a permanently swollen aspect, enough to bring it back more toward normal. If you buy the stuff, read the instructions VERY CAREFULLY, and you'll find the statements about long lasting relief there.

Robert

OhMyEars

12-06-2008, 10:40 AM

petboyCA

12-06-2008, 03:26 PM

I'm curious to know why you don't use them every day. I see you did for awhile and then started PRN use - why? And re: side effects, have there been any studies on safety as well as efficacy with long term use?

A recent audiology test revealed some "negative pressure" affecting my eardrums (called "Tympanic retraction"). This means that I present symptoms of both ET blockage as well as ET patency. This was also noted by Dr. Di Bartolomeo when he examined me in Santa Barbara. The sensation is that my voice sounds a bit distant and muffled to my ears. I'd noticed early on that when the drops were effective that this occurred. So I've decided to try to lay off the PatulEND to see if this ET blockage indication will moderate. I'm also going to email Dr. Di Bartolomeo about this for maybe some advice about this. As well, I've an appointment with an ENT who is also an Otologist (a specialist in ears) at UC Irvine. I don't think the drops have instigated this since I was diagnosed prior to commencing use of the PatulEND.

Robert

answersplease

12-06-2008, 09:35 PM

OhMyEars

12-11-2008, 10:39 AM

petboyCA

12-11-2008, 03:35 PM

Getting back to the original post here... My experiment of going without tea has shown some interesting results. I've been without this joy juice now for apprx. 10 days, and I think the PET has been better. I had several days with very minimal symptoms. But after 3 days of this "reprieve" (and no tea), WHAM! I'm hit with it hard from out of the blue, all day and most of the night. So, it's probably too soon to tell about the tea theory.

Now, a friend of mine suggested that maybe the weather - barometric pressure in fact - could have something to do with the fluctuations in symptoms. Interesting idea. I'm going to start a journal of what I've eaten, the weather, etc., and how my PET symptoms are. Has anybody here done this before? If so, what did your results show?

I've noticed that rapid variations in ambient pressure (such as driving up or down an incline on the freeway), can have an effect; on a few occasions this has caused an eruption of autophony. The drive from Riverside, CA to Santa Barbara, CA to the Ear Foundation, has (in both instances) caused severe autophony to occur either right afterward or a day later...due to a long, rather steep and rapid drop to the coastal area leading to Santa Barbara.

Robert

answersplease

12-12-2008, 02:55 AM

OME:
Keep us updated on how the tea experiment goes! Even though it might not be getting rid of your PET, it may be eliminating further weakening of the tissues sorrounding the ET or the ET itself.

Robert, I haven't heard from you in a while. Have you recieved my emails?

OhMyEars

12-12-2008, 10:09 AM

Yeah, we can probably just forget about the tea theory. I've gone without it for awhile now, and the last two days have just been horrendous with PET. I'm curious as to why you would think that it could be weakening the tissues around it? Did you read this somewhere?

My husband seems to think it's because I'm not getting enough fat in my diet and that I'm too thin. I eat primarily chicken and fish, fruits and veggies, almost nothing fried, very few sweets, but on the rare occasions I eat something high in fat, my ears "seem" to be better the next day (as noticed by hubby, not me). Anybody else here notice that?

Robert, interesting about driving on inclines. Perhaps a change in barometric pressure can exacerbate it as well. We've had rain the last 2 days here, and guess what? The PET has been unbearable. The forecast is for sun the next few days - stay tuned to see if the symptoms get any better...

tigersaint

12-12-2008, 11:20 PM

Tigersaint:

I was looking back over your older postings, and in March 2007 you said that your allergist took some blood, did some tests, and determined that you might have Common Variable Immune Deficiency (CVID).

But you never said whether or not you tried treating it, or what the results were? Did you actually have CVID? Did the treatment help with your Eustachian Tube problems at all?

Thanks!

Cami

Hi Cami-- Sorry for the slow response; haven't checked in in about a week... Yes, i did post almost two years ago that i was going to an allergist and she thought i might have CVID- but it turns out that i didn't. Even though it would've explained my symptoms, i was very relieved to find out that i didn't have it since the treatment involves being connected to an IV machine 3 or 4 times a week- which would seem to interfere with normal life even more than PET(!) My PET (or what i think is PET) has continued to be a problem, but on the bad days i try to focus on the positive things that i do have , like relatively good health, instead of the negatives that go along with PET-- as trite as that might sound. But if you, or anyone here, thinks that your immune system might be compromised- then by all means get tested for CVID; there's lots of info on it on the web, but a couple things i remember learning aboout it was that it is congenital (you are born with it) and people who have it usually have a lot of ear problems as young children (i had tubes 3 times, which is one reason the Dr. thought i might have it.) Good luck!

Jason

answersplease

12-13-2008, 02:11 AM

OhMyEars

12-13-2008, 10:11 AM

but I assume any foreign chemical can do harm. What I know of tea is that the caffeine can cause dehydration which can increase the severity of PET symptoms.

Gee, I wasn't aware that tea was a "foreign chemical." It comes from a plant for goodness sake. How foreign can that be? I'll buy the dehydration theory, though. That makes more sense to me. Good suggestion. I'll definitely increase my water intake and see if that helps.

Sunny day yesterday and only mild symptoms....

answersplease

12-18-2008, 04:26 AM

Gee, I wasn't aware that tea was a "foreign chemical." It comes from a plant for goodness sake. How foreign can that be? I'll buy the dehydration theory, though. That makes more sense to me. Good suggestion. I'll definitely increase my water intake and see if that helps.

Sunny day yesterday and only mild symptoms....

Yes, tea is not a foreign substance. I think I was unclear somehow. But I think dehydration is the main issue with tea...I'd also suggest no coffee, caffeinated beverages of any kind (certain sodas).

answersplease

12-18-2008, 04:30 AM

Hi Cami-- Sorry for the slow response; haven't checked in in about a week... Yes, i did post almost two years ago that i was going to an allergist and she thought i might have CVID- but it turns out that i didn't. Even though it would've explained my symptoms, i was very relieved to find out that i didn't have it since the treatment involves being connected to an IV machine 3 or 4 times a week- which would seem to interfere with normal life even more than PET(!) My PET (or what i think is PET) has continued to be a problem, but on the bad days i try to focus on the positive things that i do have , like relatively good health, instead of the negatives that go along with PET-- as trite as that might sound. But if you, or anyone here, thinks that your immune system might be compromised- then by all means get tested for CVID; there's lots of info on it on the web, but a couple things i remember learning aboout it was that it is congenital (you are born with it) and people who have it usually have a lot of ear problems as young children (i had tubes 3 times, which is one reason the Dr. thought i might have it.) Good luck!

Jason

Jason,

Thanks so much for following up.
I had some blood tests done by an endocrinologist, and everything checked out fine, so I don't think I've got any issues with my immune system. That IV deal does sounds horrible too!

Cami