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Avatar universal

worried about ears...patulous euastation tube

Hi does anyone have PET (patulous eustation tube)-when they talk, they hear their own voice very strangly and ears feel like their full of pressure. Does anyone know how to deal with this? Can this be cured? although i know i have eustation tube problems and my ears always feel clogged.
Thanks
Hawk
71 Responses
Avatar universal
I figured I would answer your questions here. My symptoms include, but not everytime: it usually starts with some congestion in my head and nose. I feel pressure. sometimes this leads to sinus headaches- when typical ibrufen doesnt really help it. I also get a weird sensation- like my head is floating or something- I am not sure how to describe this sensation. I call it who-who headed. Sometimes I get dizzy with this. I can sometimes feel/hear fluid in my ears. some mornings I wake up and my ears feel really wet- fluid draining out. I get ear pressure, sometimes pain in the ears, and fullness feeling.

I went to an ENT, she told me I had ETD and that my nasal area looked inflammed. I went for allergy tests- everything was negative. I couldnt figure out what was causing this. She told me to start on the flonase- so I did it for a couple of weeks. After it seemed to clear all up, I stopped taking it. oh yeah- I also went for hearing test which showed that my hearing was fine. THey did a pressure test to show if there was pressure behind my ear drum and there was. she said it was probably fluid. I went back about 1month later- it looked good to the doc. Anyway, I did pretty good for awhile, but I started having a lot of stress in my life again. I am not sure if it is stress/hormone related for me, but it seems to be. I will get these symptoms maybe every few weeks or so.It seems like every month I have something new to worry about. As soon as I wake with that congestion, if it isnt gone by the next day, I will take the flonase for about 3days. This usually clears it up for me. Everyone is different. Also, there are many types of ear/sinus problems. I have a friend who let an ear infection get really bad- and now she is partly deaf in that ear. SO, when it comes to my ears, I dont mess around.

I would suggest allergy tests if you havent had them done already. if you have allergies, if there is any way to avoid them, do it. sinuses and ears are connected. for me, I think for a lot of people, when your sinuses become inflammed, causing more fluid to become logged in your ears. this can screw up those tubes. For me, I just realized that I have non-allergic rhinitis. I really didnt know there was such a thing. My ENT didnt say anything about it. Because it can be caused by stress- which I really believe is my case- I need to learn to deal with my stress. So, I will continue to take my flonase when needed and try different stress techniques. Oh- I have also heard taking large doses of Vit C- might help reduce inflammation in sinuses along with other parts in your body, which will help clear up blockages. I havent tried this yet. That will be next.

Ok, I guess I have gone on long  enough. If you have any other questions please dont hesitate to ask!!
Avatar universal
Thankyou very much for your comments Torque, much appreciated. Yes my next option is to have an allergy test, but even so, my ears just pop and crackle non-stop all day and i do get that same sensation as u, i thought it was just me. My head feels very light and like its not part of my body, if that makes sense.

Have you not had treatment for your Sinusis other than flonase? Is there no operation? and do you get the popping and crackling noices too? I thought maybe the adenoids were blocking this, or even the the muscle behind the eustation tube was not working properly, because sometimes when i yourn, my right ear feels with air and i cannot get rid of this (sounds like an ocean).

Im currently on Flixonase to treat any allergic allergies that may be causing all this, however, does not seem to work. Im going to see an ENT on the 6th, so hopefully i can get some help there.

Thankyou fot your help, once again, hope to hear from you and i hope your symptoms are also relieved.

Avatar universal
Yes, I too get the crackling/popping sound. It is so annoying!! I sometimes get the ocean as well. As for surgery, I am sure they would do some type of surgery, but because I think mine is stress-related, I will not have surgery when I might be able to fix the problem myself. When the doc look at me, I think she said my adnoids were fine, but I am not positive.

I have not heard of the medication you are on. I have a friend who is on three allergy meds- two pills and nasal spray. You might need something stronger or something added. Your ENT will be best to tell you. Just make sure you are up front and tell them everything!! Dont leave out any symptoms. I usually make up a list before I go just so I dont forget. My doc's love to see me coming!! Well, best of luck!!! Keep us posted!!!
Avatar universal
I have similar problems with nose congestion at nite and sometimes my ears are wet in the morning.if you dont mind me asking what does ETD  stand for? they said i have turbinate hypotrophy but in the last few months i get this crackling in my ear usually on the phone or certain pitches . thanks  
Avatar universal
no problem. ETD stands for eustachian tube dysfunction. Its went the little tube that connects your sinuses- nose and ear- has problems. the fluid can get trapped in there- causing problems. there is a ton of info on the web about this. good luck!!
Avatar universal
Thank you for the info.
215092 tn?1215113189
Patulous eustation tube is exactly what the ENT told me I have.  I am seeing another ENT that specializes in the middle ear/inner ear this coming friday.  To sum it up in one word it is so nerve racking. OK, thats two words but that is what it does, makes you crazy.  I have read about premarin drops for the nose, my rheumatologist told me that would swell the tissues and that could possibly cause the tube to close. I have also read about tubes being put into the eardrum to allow pressure to be released. I know exactly what you are going through. I have had it for about a year now and have been to the doctor and been told things like allergies, stress,congestion etc. The ENT told me that congestion would actually help. I can get relief if I lay down with my head lower than my body.  That is just wonderful but I am a teacher and I think that just won't work for me. It consums a big part of my day. It effects my mood, my ability to think and to speak. It makes eating a salad torture.  Thank you for writting about your experiance with this terribly uncomfortable ailment. Keep in touch, I think we need a support group.
Pburk
Avatar universal
I too have been diagnosed with patulous eustation tubes. My ENT said the cause of my problem was due to a sudden and rapid weight loss. I have recently been diagnosed with lymphoma, and have just started chemotheraphy and have lost 35lbs.      
I was experiencing the same symptoms you describe; hearing my own voice when I talked, clogged ears and a feeling of light headedness.  When I told my doctor the only relief I got from the clogged ears was to lie down flat, he knew right away PET was the problem.  He felt that the loss of body fat around the tubes was the reason my tubes were not closing, and this was causing all the problems.  He told me the problem should resolve itself as I begin to gain back some weight.  He also told me that in the meantime, my tubes may adjust to my new weight.  It has been two weeks now, and I have had some relief.  I also gained back about 5lbs.  I don't know what your exact situation is, but hopefully any info I have given you is helpful.  Good luck and I hope your situation improves.
215092 tn?1215113189
An update on my Patulous Eustation tube.....I still have it!! I have had a ventilaton tube inserted and now I have the original problem and now with a cool breeze. Trust me this is the worst feeling. It totally does not help!!  I agreed to buy the premarin drops (a compound made by the pharmacist not covered by my insurance,,,100.00)  I have been so sick with nausea and dizziness the past few days I can't risk taking these drops any longer. On top of that the over load of estrogen has its own side effects.  I am still desparate for an answer. I am sure my ENT specialist is able to sleep at night, and function normally during the day so I have to be the one to research this for hours and hours!!
Avatar universal
I also have Patulous Eustation tube from time to time. I agree it the most irritating thing. I can bring it on almost instantly by eating chocolate or other sugary food, and I can often have a problem free day by have NO SUGAR ALL DAY which is hard, but can be worth it, especially if it is a singing day. Mine does seem linked to blood sugar going wrong or dehydration; lots of water can help. I don't know if either of these solutions will help anyone else; maybe give it a try and let me know?
Avatar universal
Forgive me, for I am not familiar with posting to groups or forums.  I often read them, but don't know exactly how to participate.  I just couldn't help but try to comment here though.  I agree with the person above who said that we need a support group.  I believe 100% that I have PET, and self-diagnosed myself back in 2004 when I was pregnant.  I have had symptoms of PET for as long as I can remember- back in 1988 when I was still 17 years old!  I'm now 36.  My mother, a speech-pathologist took me in for some testing to an audiologist she worked with when I was complaining as a teen, but couldn't find anything.  Through the years, I have just dealt with the annoyance of hearing my own voice and breathing, and the worst- hearing myself chew food.  Again, agreeing with what was written above, it totally alters my mood and I don't want to talk at all.  I can temporarily stop my echoing by sniffing hard enough to close my tube (I guess that's what's happening), but as soon as I swallow, it opens back up and hello echo.  I have been luckier than most of you who have it all the time, as my symptoms have come and gone through the years.  It really peaked when I was pregnant and so I went searching on the net and finally found my problem.  It was at that time that I learned that if I put my head down below my knees that my echoing stopped immediately.  I was SO relieved that there was something that I could actually do to end the echo, even if it was temporary.  Sometimes as soon as I lifted my head up, it would come right back.  Still, I felt like I had some power when I needed it desperately.  True- being a teacher or many other professions wouldn't make it possible to be turning your head upside down all day.  I am a stay at home mom, so I can put my head down when I want to.  Just a note to add to the rest- I find that I can easily go into echo mode when I haven't eaten for a while (skip breakfast or something) and/or when I am hot.  Someone mentioned it being worse in the winter (that might have been another site), but for me, it's when I'm hot.  It really seems to be happening to me a lot lately, and I can only relate it to not eating at certain times and being very hot.  I will take into consideration what I have read about staying hydrated with water, and I will watch my caffeine intake.  Not eating sweets is hard- but I'll do it if I need to.  I'm just so happy to have someone out there know what I'm talking about.  Thanks for letting me share my story.  I wish you all the best.
215092 tn?1215113189
Hi this is Pburk, from a few posts up.  I am still suffering but there may be light at the end of the tunnel.  I have a new ENT that has told me that he can operate and even though it isnt a sure thing, like say a tonsilectomy it may help. He is going to insert fat into the tube or he is going to cuterize the tube.  School started the other day and as expected I thought I was going to not make it that first day. The more I talk the worse it is, and I had parents and children demanding my attention.  I wish I could talk to you all suffering with this on a more personal basis. I don't know if my putting my email in here will work.  In the meantime my surgery is scheduled for October the 10th and I will let you know what happens. The doctor did tell me that he had another lady with the same problem and she seems to be doing well since the surgery. He said it is an out patient procedure and will take about 20 minutes to perform.  I will keep in touch
PBurk
Avatar universal
My husband suffered from sound and pressure evoked dizziness, vertigo, imbalance, tinnutis (sp??), hearing his voice, heartbeat, eye movements, conductive hearing loss & nausea for over 20 years. We finally found Dr. Carey at Johns Hopkins in Baltimore who diagnosed him with superior canal dehisence, a rather recently discovered condition and was able to cure him. It required inner-cranial surgery, but only 1 week after later he is well on his way to being cured. Dr. Carey performed the same tests that has been done repeatedly, but he knows what he is looking for!  Not only is he the greatest doctor we ever met, he is one of the kindest also. I am not a health professional, I just want to tell everyone who may have this condition about our experiences. http://www.hopkinsmedicine.org/otolaryngology/carey.html
215092 tn?1215113189
It is one day after surgery for my Patulous Eustation tube. The doctor cuterized the tube and took fat from my leg to surround the tube. He said if my body cooperates it will build up enough scar tissue to close the tube.  He entered through the throat and so my throat and tongue is sore and a little swollen.  He said it was not a promise surgery, it may or may not work, but I did say I would pass the word to anyone that might be suffering the same thing. Good luck to any of you with the same problem. I will be glad to share any information I can with you.
P.Burk
Avatar universal
Hey thanks for the reply

How are you feeling after your operation? Does it feel any different to before you went in?? (I know its early days already).

I just had a few queries to ask and talk about. Basically ive had numerous pressure and popping sensations with the ears, every day for 5 years. Ive had symptoms of ear pressure, ears feel like they open up when i yourn or shout loudly, popping continuously all day when i swallow or eat/drink and a strange feeling around the jaw area that feels like i need to pop my ears. However, when i pop then, with in three seconds, they feel like they need popping again. This feels like a really annoying cycle that continues all day, every day and never goes away.

The only time this goes away is when i have a really bad cold or blocked up nose. This is where im confused. Do you think that this is patulous eusation tube dysfunction and is your method the best way to dela with this, because when i go to ENT specialists, they say that we can do nothing about your eustation tube problems....They seem to know nothing except put era tubes in. When i have t-tubes in (like present), they never open up when i yourn, however, my jaw are feels like they need popping all the time. Why is this? Is this what you have with PET?

Thanks
Luke
215092 tn?1215113189
This is day 3 after surgery wednesday. My throat is still sore and I have still not had the feeling/sound/autophonic symptoms as before in my left ear.  I am thinking I have swelling in my throat and therefore I think I may have some congestion, enough to keep the eustation tube closed.  I have been very careful how I move my jaw and the volumn of my voice.  As I can tell, you know what I mean about manipulation of your jaw and even my tongue back in my throat in order to keep from having the autophonic sounds.  My right ear pops and cracks, not near as much as the left did before the surgery.I told my doctor that when I would press under my ear I could make my ear click and relieve the symptom of the autophony. He said that clicking was the tube.  I noticed too that when I would raise my voice or sing it would make it much worse. One thing the doctor told me before going into surgery that I found funny was not to be blowing up any ballons.  I asked his assistant about the right ear but she said he would only do one ear at a time and it would be a waiting game to see if it works.  

The doctor did diagnose me with PET,  Patulous Eustation Tube, on the surgical orders it said Dysfunctional Eustation Tube.  I have noticed that my nose isnt constantly running. I know that may seem silly but I was always with a runny nose. I am not a physician but I am thinking that maybe since my tube was never closed that is why I had constant drainage from my left nostril,  I never had congestion except when I would lay flat down or put my head down between my knees. I would trade congestion for that autophonic sound any day.

The doctor did put a T-tube in my ear and replaced the temporary tube that was there. My understanding is the T-tube will stay in place longer and would aid in the resolution of the problem.

You have dealt with this much longer than I could stand. I can't imagine 5 years with this.  I did see 3 ENT specialists before I found someone who would address it at all.  Actually I haven't really been sick that much in the past year. I work in a school and I think I have luckily built up some resistance to germs. The summer of 2006 is when it first began. It wasn't until about October of 2006 before I saw a ENT. Of course that doctor filled me up with nose sprays and decongestionants which made it all that much worse. I am doing a lot of praying this works. Working in education I don't make all that much and even co pays and deductables do me in.  I just wanted other people to know who have this same thing that there may be light at the end of the tunnel and if I can give anyone hope than that is great.  I would be glad to share my doctors information with you.  You can try emailing me at p.***@****
Good luck and I will share whatever I can with anyone who is having this terrible annoying problem.
Pburk
Avatar universal
(tried to post this earlier, but didn't seem to work- wasn't signed in or something- now copying and pasting- hope it doesn't come up twice.)

Hi there...  It's been so long since that first post of mine, and I wanted to thank you for writing back.  As horrible as PET is for us, in the meantime, we've been dealing with my husband being diagnosed with thyroid cancer.  It all happened pretty quickly as he found a lump in his throat on Sept. 10th and then after an ultrasound and biopsy was schedule for surgery for a total thyroidectomy on Oct. 15th, just after your procedure.  Fortunately, the prognosis with thyroid cancer is very good.  He has a long road ahead of him though, with a radiation treatment coming up in a few weeks as well.  Anyway, that's a whole other story, but wanted to mention why I hadn't written back.  I truly appreciate the response and the info I have read here.

How are you doing now since your last post?  I think it's fabulous that there may be something that could work to fix this problem.  You are brave for trying it out and sharing the news with us.  

My PET (self diagnose) has been fairly under control lately, so I am very lucky.  At times like this when it is infrequent, I feel as if I can just put up with it.  There are times that it happens everyday though, and if it gets worse, then I would consider some sort of treatment.  For now, I just sort of deal with it.  

What you mentioned about your nose running was interesting to me, as I notice when I'm hearing the echo, I am constantly sniffing (to close it back up) and find that my nose is a little runny.  I never gave much thought to that until I read what you wrote.  I thought maybe it was because it happened when I was hot too.

Take care and keep us posted.

Thanks, Andreana
215092 tn?1215113189
It is now two weeks and 3 days since I had my surgery.  I started back to school (as a teacher) this past Thursday. I almost went into a panic mode because the more you speak the worse it gets and I was so afraid to trigger anything. There were times during the day thursday that I felt like the tube was open just a little, nothing to the extent it was before surgery.  I am trying my best to remain optimistic because if the plan was to cause scar tissue to form that has to take more than 2 weeks for sure. I see the ENT on November 6th.  I am real anxious about that visit because he will be the one to look and see if he sees a difference.  Sometimes I hear a hollow sound in my neck on that side. I had that before the surgery too.  I have been so afraid to manipulate my throat or press on my neck because I dont want that stinkin tube to rely on me being the one to close it.  Sounds silly but having PET you must know what I mean.  
I can say for certain that since my surgery I have not experianced the very wide open sounds like before so I am feeling good about that.  I will still hug my doctors neck when I see him, I have felt relief and that is good news.  I know what you mean about good days and bad days. In the past few months I would have the bad days more often without relief.  Early on I would think that if it didnt get any worse then I would just deal with it and I probably could have but it did progessively get worse, and it was like a losing battle. I knew that I had to do something for sure at open house at school and I was speaking to so many parents. It was so terribly uncomfortable.

On the way home yesterday from work I was feeling pretty good about not having problems communicating with parents or children.  I am still praying for a successful outcome.  I would think that 6 months down the road I will know for sure.  My doctor said it might be 6 weeks.  
I have noticed that my nose hasnt been so runny but I have felt drainage in the back of my throat now and then.  I scared myself the other day when I was eating some baked fish with breading and I guess I inhaled the bread crumbs and caused myself to have a coughing/ sneezing attack.  I thought oh gosh I probably really blew it.  Stuff like that happens though I have to be able to function with some sort of normal I cant be afraid to sneeze or cough.  
I hope your husband recovers soon.  I have heard that if you are going to have cancer than Thyroid cancer was the easiest to cure.  It is still very scarey for you and him I am sure.  Cancer is such a mean disease. Good luck to you both.
I will keep you posted on my outcome.  I guess we are not supposed to share email addresses in this forum.  That's a shame
Pburk
pburkatcomcastdotnet
Avatar universal
Have had PET for eight years.  No popping ears, but stuffiness and amplification of voice in left ear.  Have learned to live with it, but as a singer it sometimes causes me problems especially when singing loud.  How is your ear doing now.  Do you feel surgery has been sucessful?  Who was you doctor and where was surgery performed.

Thanks
artfesst
Avatar universal
I have suffered with this for about 18 years (I'm 45 now).  It is almost always in my right ear (only one week in that time did I suffer both).  I can hear myself breathe in stereo (what a horrible feeling).  It is hard to focus on anything else as all I can hear is me talking or breathing.  It feels like I'm underwater talking if that makes sense).  I too get a funny light headed feeling as it comes on - an unreality.  It seems to happen when the weather is hot and humid or even just humid.  It also comes on when I'm doing a lot of talking and is particularly troubling when at work as it is very distracting.  I saw an ENT years ago and he asked if I'd lost weight at that time - I had lost a few pounds below my usual 120 (which I guess was substantial for me), which he thought was helping with the pressure imbalance in the Eustation Tube.  If I sniff hard, it will immediately clear (only for a few seconds to maybe a minute or two), if I put my head between my knees it will clear immediately too - but comes back within seconds when my head is back up.  The ENT suggested that I drink a lot of water and in my case although he hated to recommend it, add salt to my diet to help me retain liquid think.  I now buy Thermatab (salt pills) from the pharmacy (usually kept behind the counter) and when I know the weather will be hot or I'll be doing a lot of talking, I take 2 in the morning and drink 2 full glasses of water - it usually works.  At least my fix is cheap, but it is not permanent.  If I'm at home and get it, I immediately start drinking water and after the 2nd full glass, usually get relief - sometimes it takes 3 glasses.  Good Luck to all with this annoying problem.
Avatar universal
It's been a long time since I've posted here- wanting to find out how you are doing pburk.  Interested about what you said, Charlene, about just drinking a lot of water and having it go away.  That was something that I learned from this forum- that staying hydrated was important, but I thought I had to do it ahead of time, and if I didn't, then it was too late.  I will now try to have several glasses if it still happens.  

During my last daughter's birthday party, it was hot, I was stressed (from planning and hosting) and sure enough, my left ear went out on me and it was driving me crazy.  I was doing the hard sniff thing, to get it to plug up, but just had to do it over and over and over.  Later that night, we watched the video of my daughter opening presents and all I heard was myself sniffing and sniffing and sniffing, since I was the one taking the video.  How awful that sounded!  I never realized how much I did it, and how I must sound to other people.

Just hearing the other stories here really helps me to not feel so crazy.  All the time, I'll put my head between my knees, just for that short bit of relief and my husband will say, "What are you doing?" even though I've told him many times.  I just say, "My ear isn't working right."  No one understands though, unless they have this problem.  So, I am just so grateful to not be alone and have someone understand what I'm saying.  Most of the time if my ears are "messed up" (is what I say), I just don't want to talk, and especially not chew and swallow.

I know this is not a busy forum, so not sure when anyone will read here again.  I'll try to check more often.

My best wishes to everyone.  Thanks for the tips!
Avatar universal
I can`t believe that 10 years of suffering all the stuff I`ve been thru,there`s a place to find others like me. Funny that I`ve used this computer for everything else except to try to find help for my crazy head issues(medical not mental) ! Mine is a very long complicated story, but I`ll do my best to shorten. About 10 years ago I had a sinus infection that went awry.My ear felt like there was fluid in it, crackling & popping like it was trying to drain, but I couldn`t pop it like on a plane. All of this is & has been right side only. Pressure under the right eye like my sinus cavity was full & if someone could just drill in there & suck that stuff out it would be all better. after the first ENT went all up my nose with a scope several times & tests, he passed my to his partner that was more ear doc, he tested for meneres` , pressure tests , injected my eardrum with cortisone several times, then threw up his hands. the next one put a tube in it, nope! not the answer. Can`t tell you how many drugs & spray were prescribed. was sent to allergist...nope!, oral surgeon about tmj ,had it, but not the answer to this. Two more ENTs & I was finally told it was my eustachian tube all along,it was stuck open & we needed to permantly plug it & have to keep tube in forever.Even this didn`t help the feel of sinus fullness, headaches & by now there was so much nerve damage to my ear, I had lost ALOT of my hearing.Enter doc #6, who just helped me keep the tubes in(they never lasted more than 2 to 3 months).As i was trying a hearing aid by now, it caused infections & fungus cuz it blocked the air flow. You can`t have both!! He & I made the decision to remove the plug & fix the permenant hole now in my ear so I could wear the hearing aid, being more important to me, since the plug didn`t help anyway. of course by now this doc, whom I really trusted, quit taking my insurance !! enter doc#7, over 65 & friend of doc #5 that put plug in.Surgery #1 to remove plug & rebuild eardrum;4 hrs. Sinus pressure finally gone after 7 yrs, but most all hearing gone & he damaged the taste gland badly(denied,denied) & after 10 months my new eardrum was sucked in concave against my middle ear. surgery #2, remove scar tissue from prior infections on the small bones that need to vibrate.This time flap cut in new eardrum did not lay down & heal, had to numb & recut & glue it down.It has been 1&1/2 yrs since then, I have 80% hearing loss,have to wear a mouthpiece because my taste was so damaged on the right that there is a constant feeling someone put a sweetart in my right jaw, so it waters & I suck on it constantly, leaving tongue & cheek raw.Recently paid to go back to doc #6, now I have a cyst growing in there & eardrum is still sucked in concave. I have to have the cyst removed & was suggested that tha damaged gland be severed to give relief. Left works fine.But only doc I trust is still not on insurance.  Told you this was a long one, this was just the hi-lights. PLEASE ,anyone with advice ?????  rjfmemphis
Avatar universal
Guys with your ETD-which i also have does anyone get a funny feeling of either pressure around the ear/cheek or numness of the most affected ear?

Im getting this and wondered if its related?
Avatar universal
Hello everyone,

I really appreciate reading through these comments and tips. I have read many other websites where people like us have posted, but never posted myself.  I'm sure there are a lot of folks out there that suffer like we do and appreciate reading our tips and comments.  Thank you to everyone for all your suggestions.  I like to write them down and try them out.  It seems some ideas work for some people and other ideas for other people.  
I have PET and do really well in the allergy season.  The congestion is helpful.  When I get a cold its great too.  I've thought if I could just find a way to get congested that this might solve my problem.  I try to make myself sneeze thinking this might cause the eustachian tube to swell or become inflamed. What does everyone else think of this?  Anyone tried that.  Any luck with ENT's you've seen or suggestions they've made??
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