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.
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!!
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 (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.
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!!!
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
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!!
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.
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.
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!!
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?
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.
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
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
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.
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?
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.
(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.
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
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.
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.
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.
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
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??
Wow, 3 posts since I last wrote. I'm not glad to see that there are others out there with these difficulties, just glad that we all have found this site to share our challenges.
I was so disheartened to read your story rjfmemphis. Wow, unfortunately I cannot relate to your situation at all, but my heart goes out to you. This is one of the reasons that I actually have not gone and looked for help with ENT's, not that they are all bad, but that this seems to be such rare thing that gets overlooked or that doesn't have and easy fix. (Still wanting to know if Pburk's procedure worked- seemed less invasive.) I am just amazed at your persistence in this matter and am sorry about your hearing loss. I wish I had some good advice for you. All I can do is offer some support.
Anyway, I'm able to put up with my PET for the most part, as it comes and goes. If it's in both ears at the same time, then it's pretty awful, but that is usually not the case. That happens once in a great while.
Just recently I've been trying the "drink 3 glasses of water" tip that I read above and I think it works. Since it's so hot right now, my left ear seems to go into echo mode pretty easily so I'm trying to stay hydrated and eat before it happens, but if it goes out, then I just drink a lot of water. I haven't had any really bad days lately, so that is great.
As for nickieb, I have not had any of those symptoms you describe, except maybe some pressure in my ear, but not the cheeks and not any numbness.
To Steve19, that is interesting about the sneeze. I have not thought of that or noticed it, but I'll try that next time. I'll just take a whiff of pepper and see if I can sneeze it out. I agree with you that it seems some things work better some than others. I would almost try anything on my own to make it stop and not have to get professional help. Hopefully I can keep it at bay for now.
Long story short nothing has help my P.E.T. I have not been back to the ent since my last surgery.
I have tried to put it out of my mind as much as possible and just deal with it.Today I thought I would just look to see what else was going on in our little world of P.E.T. I found it very interesting about the humidity and drinking water. I live in Houston so you know it is humid and I am the worse about not drinking enough water or anything for that matter. I am going to try this, I mean really what can it hurt? What if it really works!! I have a vision board with a big sign with a line right through Patulous Eustation tubes so I am adding a little Oprah in the mix. Most everyone I know knows about my problem as weird as it might seem at least I now they know that I have really done all I can do surgically so if I have to hold a finger under my ear to close it myself at least I know they understand somewhat. Thanks for the suggestion
Cheers to all !
Oh no! I'm so sorry to hear that the surgery did not help. I was really hoping that since so much time has passed since then that you were doing well. That is really discouraging to hear, as I thought that sounded like a real plausible solution and something that I'd even try if I could find and ENT to do it.
I know I'm repeating myself here, but yes, the heat really seems to do me in as far as my ears go. I don't understand the physiology behind it, but I know that heat is a major factor. It's not to say that it doesn't happen to me in the winter or when I'm cold, but overheating really seems to trigger it for me. The other weird thing, as I've mentioned also, is that if I'm stressed- it seems to happen more easily too. Always seems to be at the worst moment that my ear(s) will go out on me if I'm having to talk to someone and am a little nervous.
As far as the water- I'm really sticking to keep hydrated right now, but water AND food seem to make a difference for me. I just can't skip meals. Again, I can't see how having food would relate to my tubes being affected in such a short period of time, but it does.
I am so grateful that I learned the head down trick to find relief, if even momentarily, because it just feels so good to know I can correct the problem and hear normally if I want to. Maybe we should all start standing on our heads a few times a day to keep the fat/fluids around the tube??
Well, it's good that people around you know that you have this problem and when you are suffering, but you know it's hard for anyone who does not have this to understand at all what you are experiencing. You said you were a teacher- do you have the hot, humid summer off? That might be a good thing if you did.
Glad you posted (Pburk), but again, sorry about the unsuccessful surgery. By the way, I tried to send you and email recently- did you get it?
No I didnt get an email from you. I have a myspace though, you may be able to reach me there. I dont know how to relay the address though. Yes I do have the summer off. Not related to the P.E.T. I had back surgery a couple of weeks ago. (recovering well)Thats what we do during the summer we have all our needed surgeries!!
I'm not a myspace user so don't know how to do that. I sent an email to pburkatcomcastdotnet, but maybe there was supposed to be a dot between the p and the burk?
I'm glad to have reconnected on here anyway. Sorry to hear about the back surgery. What was that for, mind my asking? Guess we have more in common. I haven't had back surgery, but my share of back problems with herniating a disc at age 31. I have to be very careful with stretching and exercises and not overdoing it and have been able to avoid my back going out on me since I was pregnant with my daughter in 2004, and even then it wasn't a bad case.
About PET though- I seem to have been doing well even with the extreme So Cal heat we are having lately. I just go ahead and down the water- drink tons and tons as soon as it comes on or I feel it coming on. Can you feel it right before it happens? I usually can, but it's hard to explain that feeling. I can still hear just fine, but it just feels different. Anyway, I'm liking that it seems to be working with the water, for the most part.
you are right, put a dot after the p and before the burk. I have also noticed there are ways to leave email right on this med help site if you are registered.
I have spinal stenosis now, back problems for years. This thursday it will be 3 weeks since my surgery. This was my second back surgery and a perfect example of never say never thats what I said after my last surgery, I said I would never have back surgery again. I am doing ok, taking baby steps in recovery and sweating like crazy in the brace. I have to wear the brace for 3 months. At the end of September I should be able to ween myself from it.
I am glad to hear you have had good results with the water drinking, something I am having trouble with for sure. Today was a bad PET day so I am feeling really tired and drained, it is so frustrating.
Hi there- Wow, I did let some time pass before checking here again. Read your post on the 8th and intended to write back- sorry! I have your email now in my email addresses- so can contact you that way too.
I wanted you to know that the drinking water thing is REALLY helping me. If I feel it coming on (that my ear is about to open up and start echoing), I just drink tons of water and even if it does start to echo- it's gone in a short period of time! Thank you to whoever said that in a post long ago! I have been paying a lot of attention to it lately and it's been doing the usual where it starts to get messed up when it's super hot here, as it has been in So Cal lately. I just bring a jug of water with me everywhere- when I take my daughter to the park for playdates and it's really hot. My daughter's 4th b-day is coming up and I'll be having another party- so that day will put me to the test. I'll be sure to drink lots and lots, even if it means potty breaks every 10 minutes!
Great to hear that your recovery was going well from the surgery. I am not familiar with spinal stenosis, but I'll have to remember to talk to you when/if I have back problems again. I hope not though! Glad to be PET pals though. Take care!
For Patulous Eustachian Tube (PET) dysfunction, there is a product called PatulEND, available from the Ear Foundation in Santa Barbara, CA. It can (if used properly) abate the symptoms of PET, and if used effectively long enough, can get rid of PET completely.
I posted last February and have since found much relief. My ear problem seems to stem from dehydration. As a result of a different issue (chronic diahrrea that I've also had for years), my doctor told me to cut out caffine and start taking fiber powder. He said the fiber would help my body absorb the extra water my intestines were adding causing my problem. This helped quite a bit with the diahrrea issue, but I noticed an even bigger difference with my PET. I still get PET, but not near as frequent, and it is usually on hot/humid days that I do drink coffee. It also does not take 2-3 glasses of water to stop it - usually a few swallows will do. If you suffer this affliction, you may want to try dropping caffine for a week or so to see if it helps you too. Good Luck all. I love coffee - sob :-( so therefore probably will not be completely cured.
Anything is worth a try but omg giving up coffee!!??? Maybe I will try this gradually, like half and half for a couple of days then go on and do the decaffenated stuff. I am happy to "hear" you have found releif. It is a pain in the ykw. I walk around holding my finger under my ear and pressing the tube closed half of the time. Most everyone at work is aware so I dont have to explain much anymore. Thanks for the tip, I will try it.
Hi Lotus, and Hello to you again Pburk- it's been a long time!
Lotus, I am thrilled that you found some relief to your PET as a side effect of treating something else. That is wonderful!
It's funny how PET has been such a part of my life for SO long and it really goes in cycles- sometimes its all the time it seems- and other times, like now, it is on a break. I am doing well right now and don't seem to be having many episodes, so I sort of forget about it. I am wondering if this is due to the cooler weather. I know that the heat really does me in. Stress is a big factor for me too. That is interesting about the coffee (or caffeine). I am not a regular coffee drinker. I like fancy coffees for treats, but haven't noticed if it makes it worse or not. I do like chocolate though and am not willing to give that up.
Pburk- I HATE explaining to people what is wrong when I am having an episode of PET. I know they always think my ears are clogged or it's like when you fly and they need to pop. Nobody gets it unless they've experienced it. By the way- how is your back doing??? My husband has been cancer free for over a year now and is doing really well! We are in the process of adopting a baby. We have our 4 year old bio daughter already and want to add one more to the family. So, life is busy, busy, busy and very exciting.
I've been reading all these posts, with great empathy. I too suffer from PET. The only thing I've discovered that provides instant and sometimes lasting relief (2 or 3 days, so far) is a product called "PatulEND". For those who are interested, do a search on "Ear Foundation" in Santa Barbara, CA.
Sorry to hear you both suffer too - and glad you don't give up.
Sounds like we all have humidity/hot climates in common and that those very hot days seem worse. HW is also getting some relief it sounds like from water. I'm not sure if the fiber powder or the less than usual amount of caffeine is doing it for me - so will stay with both. I know the water is a given - it definitely helps me - but I have to force myself to drink it as I've never been a big water drinker. Since HW is not a big coffee (tea?) drinker, perhaps the caffeine isn't as big a deal as I was thinking. However for me it causes irritable bowel which of course caused me water loss. I too will NEVER give up chocolate - so I won't count that caffeine ;-) I take 1 tsp of fiber powder and wash it down with water at breakfast and dinner (yum). I drink water for my first drink of the day and I don't drink coffee until after 10am (then only 1-2 cups - since I just can't give it up). The rest of the day I drink green tea as it has less caffeine than my favorite British Blend - oh well. So far, so good. I've only had a few short episodes of PET and have been able to end them with a small amount of water. I feel your pain and appreciate all the things you've posted. It really is nice to know that others know exactly what I am experiencing. Oh - I keep two bottles of water in the car at all times for emergencies - just in case!
Still not 100% sure PET is my problem but I'm 95% sure. I still have to see an ENT and maybe an audiologist to see what they say. In the mean time it's been 6+ months since the last post. Any new comments, idea's, suggestions, ect...?
Left ear problem since 2006. it's open all the time, not just once in a while. Water doesn't help, bending over does. drink nothing but a cup of coffee in the Am and then nothing but water all day.
Hi there... it has been a long time since a post, but I think about these posts quite often, especially since at the moment, I seem to be having a lot of issues with my PET. I am pregnant, and I know that is part of what is making it so bad. I keep reminding myself that it won't be as bad after I give birth, just like it was after my first pregnancy. I also know that I have had some trouble due to the heat. Being hot and dehydrated do seem to really set my ears off, and for me, even though the drinking water helped sometimes, it doesn't seem to be helping now. When I went to my last prenatal appt though, the OB said my urine showed that I was a little dehydrated, so I'm sure I should be drinking more. I also know that stress does make a difference for me. We were in Georgia last month to adopt a baby (so, yes, I'll have two babies to care for!) and it was very hot and humid and my PET was bothering me all the time. I think some of that was from stress too though. I wasn't "stressed out" worried all the time, but it was a lot going on.
I am sorry that your left ear is open ALL the time. That has got to be so hard. It really upsets me how hard it is for me to hear when one of my ears is open. When two are open- forget it! My husband commented recently that I was "sniffing" a lot. I tried to explain to him for the millionth time that my ears were messed up.
I would love to hear if you learn anything new from an audiologist or ENT. I self diagnosed myself, but I am completely sure that PET is what I have. No doubt at all.
Love to hear from you again. Take care- Happy Wife
OMG! I am so happy to have found you all. It's been a very enlightening to read all of your comments.
My story: I was diagnosed with PET about 3 years ago, but it was going on for about 3 years prior. It's normally only in my right ear and I feel quite lucky not to have the tinnitus some of you have. Just the feeling of "plugged" and the disconcerting hearing yourself talk inside your head. Mine comes and goes, but I would say I have it 65 to 75% of the time. I have always wondered about that - there are whole days when there is great relief to have a normal ear.
I will try all of your recommendations - had never corralated this to sugar (sugar is a food group to me) or coffee (again, LOVE coffee) - but am willing to give up both for a few days to see what happens. Also the water - don't drink a lot of it, but then again I live in near Portland OR and it's not humid here like it is for some of you. Will also check out the Santa Barbara ear place.
Thanks again for being on this site and it's such a relief not to feel wacky all by myself!
One more thing I forgot to say - I did accupuncture for about 9 months to try and relieve menopause symptoms and did not have the ear thing the entire time. I stopped because it got too spendy. But it was awesome for those 9 months.
I was diagnosed with PET about 2 years after a bad upper respiratory infection that triggered an autoimmune reaction targeting my small arteries (vasculitis). My eustachian tubes opened after taking large doses of prednisone to treat the vasculitis. I took prednisone for about 1 year and thought that maybe my tubes would close once I discontinued the medication, but that has not been the case .Today the vasculitis is gone, but I am still having ongoing low grade autoimmune issues, possibly lupus, but no definitive diagnosis. Anyone else have any autoimmune issues along with PET?
Okay, it's been a while since my last post. Having added fiber powder to help prevent dehydration and finding some relief, I've again started having more episodes of PET - probably because I could not take life without good coffee! I think I will take Yorkere's suggestion and try Patul-End nasal drops. I liked the write up on PET at Wikipedia -http://en.wikipedia.org/wiki/Patulous_Eustachian_tube. It just sort of reinforces all we go through! Happy Ear Health for 2010 and best wishes to you all.
I have had 14 surgeries for ear/sinuses. I had the mumps when I was 2 which caused my Eustachian tube to stay straight like an infants instead of growing in the back of my throat like an adult, I am 29 years old. I have had 2 tympanoplasties (New ear dums), 10 sets of tubes, my sinuses worked on and my tonsils and adnoids removed. I still suffer with retracted ear drums, take prednisone, clears up and comes back. Life time user of Nasonex, surgery every 10 years for sure, as these surgeries are not permanent.
Years ago there was suppose to be a new surgery that would pull my Eustachian tube down into my throat, has anyone heard of this?
I was thinking of trying the Pastul-End drops, but they are pretty pricey, so I thought I'd try plain old water up the nose first - and surprise of surprises it works for me. I tilt my head to my right shoulder (since my problem is my right ear), and sniff up enough water (perhaps 1/2 tspn) until I feel it sting my right ear area - sort of like the feeling when you get a nose full of water in a swimming pool and it smarts. I can actually feel a sting at what I think must be where the eustachian tube comes out in the ear, and also a sting in my throat where some of the water will exit. Interesting - don't know if this might help any of you out there, but it knocks it immediately for me and doesn't come back that day at least. Perhaps it fattens up the tube temporarily???
Congratulations on your discovery! I hope this keeps up for you...I've been using the PatulEND for about 2 years now, and the autophony has not presented for months now; the pops & snaps still occur but the PatulEND keeps it away from 2 to 6 days or so now...
I'm a fellow sufferer with PET and I live in Cyprus where the climate is warm or hot and humid 8 months in a year. The autophony (right ear) showed up in my childhood, probably after my tonsilectomy when i was 11. I also had wax removed with pressurized water around that time, something that I suspect might have also contributed. For years, the symptoms appeared around springtime, so I thought it was an allergic reaction to the weather change. Then it went away completely until next spring... When i was about 20 I had a hormonal imblalance so the doctor prescribed estrogen pills. At the same time i lost weight (5-6 kilos, which is a lot for me, as I'm quite thin). The combination of the two, along with anxiety must have been what aggravated my PET to the point that it became a permanent condition. I'm 34 and for the past 14 years it's been with me all the time. In the winter I get some good days, but I have learned to anticipate the bad days. I think this is the tragic of this situation. That we somehow get trapped, it becomes a habit and we can't let go. Of course doctors haven't been able to help me. Most of the ENTs I've seen in the past just didn't know anything about it. I felt like some of them were thinking that they were wasting their time with a hypohondriac. I actually convinced myself that I was a hypohondriac and that i was overeacting, until i started going online looking for solutions about a year ago. I found other people with the same problem and realized that this is actually an objectively bothersome condition.
Through my experience i have reached the same conclusions that you have. That stimulants, dehydration, emotional stress, physical exercise (which causes dehydration), pregnancy (therefore hormonal havoc!!) can cause or aggravate this condition. I found that the measures that i have taken have enabled me to manage but not to cure the PET.
I have read some books on Ayurveda. That information has shed some light. I bet we are all thin body types, with a sensitive nervous system and a tendency to be restless. That is a vata (air)type. We need a lot of water and good oil in our diet (olive, sesame, clarified butter).
I found quite a lot of relief by sniffing up sesame oil and letting it settle while lying down (this is an ayurvedic practice). I mentioned this to another group on another site I was writing. One of them asked her doctor and he told her that it might actually be dangerous in the long run, if some of the oil ends up in my lungs. I still do it from time to time, but i got a bit scared.
Which brings me to the water up the nose technique, deviced by Lotus B. Sounds great but what if the same risk is entailed? Are you seeing an ENT Lotus B? Can you ask, perhaps?
I saw an ENT last week. Palestinian who studied in Germany and has connections with an Otorinolaryngology Centre in Germany. He actually knew quite a lot about my condition. He was against the standard proceedures (fat, silicone, tube insertions). He said he performed them in Germany but the patients only had temporary or no results. There is also risk involved... He said he was going to call the centre and try to find what is considered most effective now. He called me last night with news. He said he looked into alternative solutions, because he didn't find any of the surgical solutions to be effective. He said that what he found that actually works (many patients have had good results) is a type of physiotherapy for the ET. I told him I had read about it (someone had mentioned it on another site). First the patient has to check whether the ET has atrophied and then there are are therapy sessions where the patient learns how to train the ET to function properly. Unfortunately it is not offered in Cyprus, but he said he will gather more information when he travels to a conference on the 23rd of March and he will call me again.
As soon as I have more information i will let you know.
Unfortunately i cound sound very motivational at the moment. It's springtime... but i know you... of all people, can at least understand.
So far so good with my water sniffing! Thanks Robert as if it weren't for your posts about PatulEnd actually giving true relief, I might not have tried anything up the nose! I researched them after your posts and being too cheap to buy them ;-), tried the water instead and am so happy I did. In fact, on occasion now if I'm doing something important that day and I don't want to deal with PET, I'll sniff a bit of water to assure I won't get it that day. It seems to last a few days at a time - but I've only been doing it for the month now (this summer will tell). I will report back on this later in the year.
For GlarosE - Glad that you didn't give up and found all of us who suffer with you and that you continue to look for solutions! I saw an ENT in 1996 (he was good and diagnosed it right off and suggested water (drinking) and salt to retain water. I've ended up water-logged trying to stop the PET - but it did work if I drank enough water for the most part. I don't think water up the nose is a problem as they sell saline solutions for sinus over the counter, which is water and salt; and the Patul-End drops must be water based too (maybe Yorkere will let us know what the ingredients are if the bottle says - also do they sting?). I did try the saline drops the same way I sniff up the water, and it too worked immediately - however it stings big time and I would end up with a slight earache (although no PET). Water only has the initial sting at the ear and goes away quickly. Since I only sniff up a tiny amount from the palm of my hand I can't imagine it causing a problem as it is water and should readily absorb into the body. Keep us posted on what your ENT says!
I have just self diagnosed myself with this horrible inconvenience. It has only been less than a week. Seeing the ENT tomorrow. I started with cracking noises like wax build-up shortly after having my jaw surgery for TMJ 5 years ago. Sometimes the sounds were like clicking 2 rocks under water very quickly. While in Florida 2010, I caught a really bad cold. Lost my voice, congestion really bad. I was using over the counter stuff and 4-way spray. (used nose spray 14 years) My left ear got blocked which was the first time from a cold. I had my ears flushed with water to remove wax and still had a blocked ear. Went to see my Doctor who prescribed steriod nose spray and another decongestion. I was outside in Mass. recently on a warm day and started walking. That was the first time I heard my voice, breathing, soooo loudly. Comes and goes just like the majority I read here. I'm moving to Florida this June and find that the hot humid air is not good. Figures. I was also going to learn how to dive. I'm going to ask ENT tomorrow about the water sniffing. And I'll check out PatulEnd. Thanks for having this site.
I am so happy to be reading these posts! I have had this problem for many years, and only "hard sniffing" or putting my head toward the ground helps. I only looked on the computer today to see if there was anyone else out there after one of my partners at work jokingly asked if I was sniffing cocaine! I didn't even realize my ear was plugged and that I was sniffing to get rid of it. I probably do it all the time. I am now going to try drinking more water.
Okay, I've been sniffing water up my right nostril for the last 4 months on and off as required to stop the PET in my right ear. I sniff about 1 tspn of water up my right nostril while tilting my head to the right (awkward but it works for me). When I feel that sting by my right ear, I know I hit the right spot. Water will run out of your nose and you'll have to blow - so keep a hanky near! I had PET today again - 92 degrees and very humid; I sniffed up a bit and it was gone and did not come back the rest of the day. It seems to last a few days, and I don't seem to get it as often as I did. Not a permanent solution, but the best I've come across yet .... and no more drinking multiple glasses of water for the same goal. Good Luck to you all.
Doing great with the water sniffing. So far it has worked every single time and lasts a few days. If anyone else out there is trying this, please let us know your results. I have experienced no problems at all with this - it feels just like getting water up your nose while swimming.
I am currently on Premarin nasal spray twice a day for about a month (compounded) for the treatment of PET. Now for about the past week I am waking up at around 2:15 every morning and can't go back to sleep. I am also having some headaches. Does anyone know if these are side effects? It seems to be working except for a few times. My Dr. said he can take fat from my neck and put it thru my nose to my eustation tube to "fatten" it up, but it may cause hearing loss. If my insurance will cover it, I am about so desparate I may try it. What do you think about that and do you think the insomnia and headaches are side effects of the Premarin spray?
I almost cried when I read your entry. I have the exact same symptoms and have been told by two ENT's that they can't help me. The second went as far as telling me that after having these symptoms for 4 years it would go away if I put a hot towel on my neck! I am a medical professional myself and so had thought I would be taken a little more seriously. I can't take it anymore. I am constantly bending over to clear my ears only to have them clog again as soon as I swallow. Have you made any progress? Is there anything I can do?
I've been living with PET in one ear for several years now and thought it was from getting water in my ears when swimming. Being diagnosed was a shock, and the thought of surgery was a big u-uh moment! So I've just been living with it to the best of my ability. Well, long story short, yesterday I noticed that sucking/chewing on a large peppermint lifesaver seemed to make my tube close. I deliberately ate a couple when my ear went off today, and each time it worked! Is it the peppermint oil? I dunno, but I don't care why it works. It just works for me. Just had to share this in case someone else finds the information useful.
I am a sufferer of PET and I must say, it is driving me absolutely crazy. I cannot stand the feeling of air going out of my ear; the autophony (that really gets to me) and just everything about it. I went to an otolaryngologist three time within 4 mos. and he nor his otolaryngologist brother could diagnose my problem. I finally started doing what I do best and researched it myself - Sure enough - I am a text-book case of one who has PET -- CONSTANTLY. The otolaryngoologist doctor told me on my last visit that he couldn't help me b/c he didn't see anything wrong and my hearing was super fine. He said whatever it is, "you're just going to have to get used to it." He further went on to say that he has to "pop" his ears all day long - "just ask my girls who work with me, they'll tell you." I said when you pay me a $15.00 co-pay, then I'll listen to your problems. I have suffered with this annoyance for more than 4 years now. I am going to see a chiropractor (he's not just a chiro - he's extraordinary - if anyone can help me or at least send me in the right direction, it would be him.) I have tried all of the above, absent surgery, and the ONLY relief I get is when I lie down - yes, if I put my head down and let the blood/fluids "run up," I am fine....for about 3 seconds and it's back. PLEASE, if ANYBODY has any other info to get rid of this "rare but benign" problem, please let me know. BTW, I lost 30 lbs. within a month (weight I could not afford to lose) when my nephew passed - I put the weight back on, plus some, and still, no relief - that was 5 years ago when I lost the weight - the PET happened well afterwards.
The product is known as PatulEND, and is sold by Otologist Dr. DiBartolomeo of the Ear Foundation in Santa Barbara, CA... 805-563-1111
It sells for ~$50/small bottle, with no need for a prescription.
It does work although it may take over a year to rid you of the condition completely...read the instructions completely! It's hard to learn how to use it correctly; the fluid must reach the Eustachian tube to sting it shut after properly squirting it into the nostrils.
Has the operation worked and are you still teaching? I am a teacher and am diagnosed with PET. I do not know what to do as it has affected my teaching ability. I am on sick leave but want to go back. It has happened when I lost a lot of weight due to an illness. I am trying to put the weight back on but no change in my condition. This has affected my life and my family. I find it hard to converse alot and am alittle depressed. I should have taken better care of myself. Please reply.
I have all the classic symptoms of pet and am ging crazy! In addition, I also have begun getting a pressure in both ears and some facial discomfort. The ent told me to see another dr. who treats sinus problems..Can pet create sinus pain? Do any of you have similar ailments?
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