I suffer from Patulous Eustachian Tube
This post was originally marked private by mistake. So some of this has changed.
I suffer from a Patulous Eustachian tube. It’s an ear disorder where my Eustachian tubes pop open and so when I speak, it sounds as though I am shouting into my own ears (it’s called autophony). I’ve had this problem since 6th or 7th grade, but I never knew what it was called until today. I’ve seen a number of doctors about it, even to the point of surgery, but it was never properly diagnosed.
I used to sing and act.
Yes, that’s past tense. In high school I was in 4 choirs, and I was always in rehearsal for a play at the local theatre. It’s part of why I went to college for film and theatre. I wanted to perform and I wanted to direct performers.
But toward the end of high school, the problems with my ears started to get worse. Projecting my voice became difficult because even speaking at a normal volume is the equivalent of shouting when the tubes are open. So I started seeing doctors and specialists about it. They diagnosed me with having a deviated septum in my nose, the result of having broken it as a toddler and the tissues healed side-by-side instead of along the broken edges. That deviated septum was causing constant blockages in my sinuses. Now, those blockages may have changed the pressure levels in my nose to the point that my Eustachian tubes were popping open, and I will say my sinuses are amazingly clear since. But it didn’t solve the real problem.
So when I got to college, I ended up dropping out of choir. I took fewer acting roles and refused to practice outside of rehearsal. There was a “cap” on how much volume I could muster because as I took a deep breath to ready myself, the tubes would pop open. I started breathing more shallowly, using more muscle and less air for speaking, developing a hoarseness to my voice that made singing difficult. I also have severe stiffness in my neck from holding my head in a position that doesn’t let the tubes pop open.
The only time I can speak at a normal volume is when my head is upside down.
This has bled into every aspect of my life. I don’t sing anymore, I don’t act. I avoid speaking whenever possible. I avoid speaking for extended periods. I have a weird facial tic where I am flexing my muscles oddly in order to keep the tube closed. I have a sharp sniffing habit from trying to force it closed by air pressure, which is very dangerous to the ears themselves, but it’s all I can do.
In the past two months, it has gotten significantly worse. Now, my right tube is always partially or fully open. My left tube pops open fully fairly regularly. I became fully aware of how bad it had gotten during exercise walks with my mom. I would find myself unable to speak after a short time because of this. It also came up due to the physical work I am doing for transition: making a conscious effort to relax my neck and shoulders, voice retraining, posture. All these things make it harder to hold a pose that keeps the tubes shut, and it has made me very conscious of why I have been so stiff all these years. When I relax, the tubes open. Cause and effect.
But now I am looking into solutions. It’s been 15 years, so my situation is very advanced relative to those who find help from home remedies like herbal teas and cutting caffeine. The other home remedies are: cut chocolate, cut sodium, cut exercise, gain weight. Seriously. Those are the home solutions.
My ADHD meds would normally make this situation worse, but it was so bad already that there wasn’t much damage they could have done.
At this point, I am probably looking at surgery. I will be trying to schedule a specialist visit next week to take care of this once and for all.
I cannot express how much relief I feel just by knowing that this problem has a name, and there are possible treatments for it at last. Finally, there is hope.
I want my music back. I want my acting back. I want to be able to speak to people without worrying how long I’ll be able to keep talking. I want to be able to relax again.
Wow, I had no idea this had a name or was even a condition. I don’t suffer from your problem, but I have experienced it and it was unbearable. I had an awful cold once and sneezed and the, what I now know given your explanation, is that one of the tubes opened in my ear. It felt like someone had turned up the sensitivity in my hearing a thousand times as I could hear everything in my mouth. Each breath, every swallow. Almost like my iPod headset was playing these sounds at full volume. It lasted about an hour and I was in total panic the entire time…What if it didn’t go away? Well it did after a decongestant and life returned to normal. I can’t begin to imagine how you have learned to cope. Good luck to you!
Thank you. 🙂 Yeah, it’s extremely rare; my ear, nose, and throat specialist hasn’t heard of a case in this region in a decade.
At first it’s something you just get used to since a sharp sniff can shut it again, at least for a while. And then it gets worse so slowly that it took me 15 years to realize how drastically it had affected my daily life.
However, for the past month or so I’ve been using a combination of Premarin nose drops and Jia Wei Gui Pi Tang tea and it has helped immensely. I don’t have days where it goes away completely yet, but I do have days where I realize it hasn’t bothered me for many, many hours. So, it is very slowly healing finally. (The more it can be kept closed, the more the tissue can recover.)
I’ve suffers these symptoms starting around age 59. I am a musician and had stopped performing back in the early 90’s. I recently resumed my preforming at age 74, but when the PET kicks in ( usually in my left ear only) it becomes a challenge to remail on key, and control volume. I have found that if I irrigate my nasal passages with a dissolved half teaspoon salt with about 2oz warm water it will help “rebalance” my tube. If during performance it opens again, during break I reirrigate, and it closes again…so far this works for me…
Hey, I was wondering if you have had any luck fixing your eustachian tube. If so, what helped the most? I have had this problem for years and I’m quite sick of it.
Sadly, no. 🙁
I was prescribed premarin nose drops that kind of helped? Not sure, really. It’s not gone, it’s barely better. It’s getting more annoying the more I do with public speaking and teaching.
I have the same problem after loosing a lot of weight through surgery. I went for two years from specialist to specialist and finally found one that knew what the problem was.. I had lost all the fat off of the Eustachian tube. He prescribed the compound nose drops with the premarin along with other stuff.it has helped but not all the way.. I have been on the drops going on two months and there are days that are ok and then days that are miserable. I spoke to dr. today and the only other option would be surgery which he was not wanting to do.. so we will wait until I go back in December and see whats next..
I know it’s been yrs but I (victor cook) am also suffering with the exact same symptoms, going to several Dr.,is there any progress in trwent or a cure?
Hello everyone… I have some info that may help someone! I’ve been to doctors and specialist for the last year and a half to figure out what’s been going on with my ears. I have constant popping, clicking when I swallow, and fullness, and the worst of it, echoing where I can hear myself talk out of one or both ears, and hear myself breath out of one or both ears. This has been a horrible year and a half for me!!!! I’ve seen 2 ENTs, 2 different allergists and neurology and MRIs. No medical issues with anything. I don’t have allergies and so it was just assumed Eustachian tube dysfunction. Nothing helped! I had been taking Mucinex and Sudafed to clear out what I thought to be allergies but that seemed to make it worse! …. because they dry you out! I started reading about what coffee does to the body in terms of dehydration and that in general most of us aren’t hydrating enough even if they don’t drink coffee. So 6 days ago, I started drinking one gallon of water per day. I fill one of these plastic containers up every morning and pour in a glass throughout the day until I finish it. I also completely stopped taking Tylenol Pm to sleep because I heard it can cause ototoxicity that can affect ears. This is the first relief I’ve had in 1.5 years!!! When I read about how coffee can make
The symptoms worse, it then took me to researching chronic dehydration and it’s affects on the body. I also found articles on people asking why their ears and Eustachian tubes would be affected after excersise or after running a marathon and people said that if they got dehydrated, it would affect their ears. I know for a fact, I never ever drink water. I drink coffee in the morning and maybe a total of one glass per day of water. So I felt it was worth a try between the water and getting the OTC Tylenol and ibuprofen out if my system. I also read that it can take 2 weeks of getting your hydration levels back to normal. Everything in your body feels the consequences of lack of water on a long term basis. Since your brain is made up of mostly all water, if your body is lacking it, it starts to pull water from the brain causing it to shrink and cause issues surrounding the brain. (This is from the readings I’ve done)….. so this made sense to me. I’m on day 7 and feel such a difference that I just had to share it! I’m not fully cured but I have noticed SIGNIFICANT improvement and actually in shock over it! I know it sounds so simple to think that drinking more water can help. But each of you should figure out if this could possible contribute to your own issues. I will keep you all updated if this continues to improve, but for now, I’m staying off the over the counter meds and drinking a gallon of water a day. It’s working!!! PS I still drink coffee but not nearly as much since I know it has contributed to robbing my body of water. Also drinking more water has already made me feel 1000 times better with so many other things including my chronic daily morning headaches, so you have nothing to loose, only something to gain if you drink more. I would just say, give it a shot and be patient! It could really help ❤️
Have you tried Patul-END? It definitely helps close the tube and eliminate autophony most of the time;although, I still have a lot of noise and crackling in my ears. Even though it’s super overpriced it’s definitely worth checking out if it’s getting to you.
I’ve had this since i was 15/16(I’m now 19), and frankly, it’s a BITCH to live with. I also have these long periods of horrible autophony that last months at a time, then there’s a month or so where I’m almost fine. None of the doctors or specialists I went to had heard of it, I had to Google my way and have them verify it. In these horrible periods i hardly leave my room, my friends have almost stopped inviting me to anything anymore because of my ears. Plus, here in Norway there’s nothing to do about it, so I’m screwed.
Kelly, I am so sorry to hear that. 🙁
In the past year since I wrote this, not much has changed for me. I’ve tried nose drops and tea because surgery is way out of my budget for the foreseeable future. It helped somewhat, but as soon as I got sick this past summer, all the problems returned with the same force and regularity as before. The difference is that this past year I’ve been doing a lot of public speaking and now I am a supplemental instruction leader which means I give three hours of optional lecture to university students each week. I finally told my class what was going on one day when it got so bad that I had to just pause class and hang upside down a moment. When I said it, a student in one of the upper rows called out that she had that too. I had never met anyone before who had it until a month ago, aside from folks I encounter online.
I think I may try the Patul-END another commenter mentioned, but I don’t know if that’s available to import to Norway.
Just letting you know they have an International Postage Option on their website so they do ship Internationally.
The only question I’d ask is about getting the product through customs of Norway. As Patul-END is a natural product it shouldn’t be a problem but you never know.
I hope you get it cleared up so you can get back into the swing of things.
I have this as well and i want to find all the common areas in people suffering with this to narrow down the real culprit and so i am 23 female never been over weight not very physically active or healthy tho, from tennessee prescribed adhd meds adderal to be specific been on that since middle school .. which i considered as a possible source … I have been experiencing the ear thing for 3 year ..the popping in and out like ur on a mountain or plane ..its like my ear is cutting in and out ..as if for moments i hear myself talking on and off usually my right ear sometimes both … the very first time i was outside on a very hot day and had moved alot of boxes and it just started mid conversation i was 21 at that time ..from then i try to find connections in the flare ups .. exercise brings it on almost it all the time.. sometimes heat ..i was in traffic and had no air and it started cutting in and out something awful .. also if i get really anxious or stressed it happens alot .. i am prescribed xanax for anxiety attacks and it helps the ear thing believe it or not ..I know i need the medicine when it happens but i didnt take it before this started so i have wondered if could have caused the ear thing..i also have lost alot of weight and i am truely underweight ,trying to gain. i had dental problems all my life and migraine head aches started around 3rd grade ..always worsened by smells , lights etc but estrogen based birth control pills caused migraines to the point of torture but progestren birth control shots didnt cause worsened migraines.. only i got significant bone loss after 2 years on it in high school and just stopped birth control all together. a few more things about me that might connect some dots with others suffering ..i am white , i have upper neck and back aches , i dont use illegal drugs , i have some digestive problems occasionally now very painful (probably unrelated tho) i bruise easily , i sometimes feel faint like standing up fast but it can happen without standing up fast.. soemtimes i feel very fatigued and dull and just cant fight it .. i drink alot of cokes .. im prone to bacterial infections and dental absese , i have not had my tonsils out , not a super allergic person at all and i dont have athsma and i am a smoker . please if anyone wants to email me with there info or personal thoughts, hunches , anything about how this was caused ,the doctors dont seem to worried so we have to research our on our own here , i believe there must be more to this thing … my email is sjfsarahfloyd@gmail.com
sorry so long and thanks for reading
Hi – Are you still dealing with this? After 8 years of symptoms, a physician finally figured out I have it and now I’m trying to treat it with various nasal sprays. I also have TMJ and migraine and other issues. I’m also going to try to open up my bite now. Hoping this helps.
Hi! I’m so glad you posted this comment even though i’m writing almost a decade later so I’m not sure if anyone will ever see this. I just wanted to say I noticed a lot of similarities in our stories. My ear popped for the first time when I was younger, around 7th grade, but it happened as I was getting into a very hot car over the summer. All of a sudden my ear just popped. I used to think it was seasonal bc i noticed it more during the summer so I assumed it was allergies. But now i realized that I’ve done the “sniffing” thing so often over these past years (I’m 23 now) that my ear permanently feels weird. basically i can’t get any relief from sniffing in anymore. I also thought it could be closely related to my anxiety but I’m not too sure how. Anyway I just found out the name for this disorder today because it’s so hard to describe and I was never sure what to type into google or tell to a specialist. I’m so glad there’s a name for this, I feel so happy and SO much less alone. I think it has truly affected my life in ways I cant even fully process right now
Hey! I’ve had this as well for about 2 years. I’m a professional musician and my frustration level was going through the roof! I’m a teacher and speaking/singing loudly for 8 hours a day was increasingly painful. I tried TMJ splints and spent more money than I care to think about. My case might not be as severe as yours but I have gotten almost total relief from a tube in that ear. My ENT said it might have been caused by using nasal allergy sprays for many years drying out those inner tubes or long-distance running lowering my fat percentage. I’ve had a tube for about 6 months and I’ve had almost no symptoms since. Yes, the tube does change the hearing in that ear slightly, but in my opinion, it’s totally worth it.
Glad to hear it has helped! 🙂
Where did you have you surgery and did they put a stent in the Eustachian tube ?
So I had this procedure done called eustachian tube dilation a few months ago for stubborn ETD (clogged ears that wouldn’t pop) they were actually getting better until I would travel by plane or mountains and my right one would slam shut. Well a few months later my ear was popping easier however when I swallow I’m left with this crunching Velcro pulling sound in my tube..and my tube hurts all the time.. Well sense I’m
Always trying to unclog my ear, I move my jaw around a lot to get it to feel unclogged so one day it just pops open and I can hear my voice in my head and breathing in my ear, loudly. Then I freak out and try to suck it shut which I don’t think works well.. Does it for anyone? My tube feels stuck a lot of the time where I have to lay down to get it to unstick and it hurts a lot when it does that. Anyway, it’s popped open 3 times sense the procedures been done and all three times I get this weird sense of my ear feeling full and that sticking sound stops when I swallow then it just pops open. It only happens at home for the most part and it did happen when listening to very low music with headphones on but only with head phones on. I use to be able to pop open my ear open on demand which would help with the clogged feeling but I could shut it too but that was before the procedure was done., I’m not sure what’s going on.. But if you can pop your ears at all and you have ETD not PET than don’t ever do the dilation.. Get a tube or just find another way to deal with clogged ears. I have severe post nasal drip and mucus issues that I’m thinking of not treating anymore so I don’t end up with this PET all the time. I have heard that tubes can help PET, anyone try that? I live in the US and have Kaiser health coverage so my ENT does surgery for this, just not sure what that is.. Or if it works. Anyway, I found a video on you tube on the DRS. Tv show had a girl on there who got this from losing weight I believe and they sent her to Dr. Poe in Boston to try and fix it. But I can’t find her follow up.. I’ve noticed when people get better they don’t come back and post their experience; anyone here have any luck?
I have had this for close to 3 years now. It started when I went on a commercial flight for the first time, and my ears were completely screwed for about a week after. Just blocked and it felt like I had a cold. I go partially deaf every time I fly. After the deafness cleared up, I was left with ETD, which never went away.
The frustration of trying to figure out what was wrong with my ear is something else. It now makes me angry (actually angry) to talk about to the point where I cry because the feelings of being misunderstood and dismissed by doctors and specialists over the years is so stressful. It’s like a bad dream – you’re talking and people aren’t listening. There is definitely something wrong but you can’t explain it – it’s a tricky one to put into words.
And the un-reality sensation. Hearing yourself breathe in, breathe out, *click*, breathe in, breathe out, *click*. The rush of air to the middle ear and the click click noise drives me MENTAL. It’s like I’m in a bubble and I can’t communicate with other people. I am acutely aware of how this condition has affected my interactions with people. I drop out of conversations. Hearing myself speak causes me to self-censor. I generally don’t enjoy speaking with other people, especially in large groups because it’s difficult to pay attention.
The amount of money I have spent on medical attention is unbelievable. I have tried every nasal spray, ear drop, throat spray, pill and herbal/home remedy on the market. Steroids, anti-immflammetries, antibiotics, decongestants, moisture sprays steam baths, ear candles. Heck, I even tried acupuncture for a while.
And every time I see a new doctor I have to explain all over again. And once again they suggest the sprays, the pills, the breathing exercises. Once again I am told that it will probably resolve itself and I should just wait it out.
Recently I saw a new specialist who recognised it as ETD. Nice to finally know what it is. But am skeptical of any treatment working since he has never actually seen it before in a patient, and all the treatments are extremely risky or they flat-out don’t work. I am at my wit’s end.
Like you I used to act and sing. I used to be active, exercise and enjoy getting out and about. Now it’s downright painful. I know you wrote this a few years ago now, and I’m sorry to take to the comments to have a big complain. But I am wondering if you experienced any kind of medical treatment since which has helped? I would love to know.
Regards, Suf
Suf, I’m really sorry to hear about all this. 🙁 You have my knowing sympathies. I’ve had it so long it’s hard for me to pin down when it started, though around the age it started I was getting both chronic sinus infections and had traveled by plane many times in a 2 year span. So roughly 18 years ago, now. I had surgery to correct the sinus problems but the PET didn’t go away or get better. It remained stable for almost all of that time, suddenly worsening a few years ago which finally culminated in me seeking information and discovering it was PET.
Since then I’ve tried the drops, and had discovered for myself that hanging upside down fixes it temporarily. However, since it is at its worst during social situations when I’m speaking, I tend to fall back on the sniffing fix, even knowing the problems with it. It’s just not usually a situation where I can hang upside down and continue the conversation as though nothing was amiss. The ENT I saw about the problem 2 years ago prescribed the premarin drops which frankly cost way too much for someone with limited insurance, since it has to be compounded each time. The ENT hadn’t had a patient with my problem in a decade, and of course the pharmacy had no idea what an appropriate dose was.
The premarin drops helped a bit. The jia wei gui pi tang tea tastes disgusting but it helped about as much as the drops did. Together they actually controlled it for about three months until I had to stop due to cost of the drops. The tea alone didn’t do enough, and the drops alone didn’t do enough. And in both cases, it wasn’t enough to keep my PET from flaring up when running.
What complicates things for me the past 4-5 years is that I’m taking two different medications, both of which have diuretic side effects. So I’m in a constant race with my body to stay hydrated, which grossly acerbates my PET. I’m in the process of switching off of both, though to do so involves one surgery and one significantly more expensive medication that I’m trying to get covered. Hopefully the switch will be enough, but I doubt it.
I really hope you find something that works! I’m sorry I don’t have any answers either. :-/
I just discovered I have the same problem. My ENT told me to press on my neck which creates blood constriction, which is why hanging our neck down helps resolve it. Sure enough when I’m talking I press on the left back side of my neck towards the ear and it goes away. It’s annoying, but better than hanging my head when I talk
When I write ETD I mean PET. Still getting used to the new diagnosis…
Thanks so so much for posting this! I have been suffering with this since 2006. I can’t pin point the exact cause, but I also agree caffeine/sugar make it worse. I have literally cried out of frustration of being misunderstood by doctors and near depression. Like you, I fully realized this year the immense effects of thi chronic ear disease on all aspects of my life. I didn’t see others mention if they had prior surgeries but I had three tympanoplasty mastoidectomies with reoccurring cholosteotomas…. my most recent one this past July. Im actually printing this entire blog post to read aloud to my ENT because aside from the singing aspect, everything you posted is my EXACT feelings. Thanks so much, I finally can put a name to my ear problems
Gosh, I’m so sorry to hear another person who has gone through the wrong surgery to fix it. I wish I had better news about prognosis now that you know what it’s called, but we don’t have good options yet. I hope some of the ways to manage the condition are enough to help! <3
I have PET too. I tried a low gi diet last year and found that it seemed to help my symptoms a lot, but I couldn’t fathom why that might be and in the end I put it down to coincidence. So it’s interesting to hear you say you feel sugar makes your pet symptoms worse. Can you elaborate please? Also, do you have any idea WHY sugar and caffeine might worsen symptoms?
I’m going through the exact same thing and it’s affecting my life so much I can’t stand it. Funny you mentioned hurting your nose… I tripped once when I was little while running and fell flat on my face scraping it and my nose pretty badly. I can’t help, but wonder if that has anything to do with it. I’m a teacher now and use all sorts of strange methods to keep the condition under control to try and have it not affect my speech too badly. I use a saline rinse so my sinus allergies don’t affect it, I “pop” my ears by holding my nose and breathing gently into them (lasts a few seconds at most), I bend over so my head is lower and that helps for a short while. I don’t know how much longer I can take this.
Did you go for the surgery? Did it help?
No, I would never be able to afford that. :-/ I haven’t found anything that really helps, other than the same sniffing and hanging upside down tricks you have. I’m really sorry. It’s so hard when speaking is a huge part of your job. <3
Hello everyone. Like you I have been diagnosed with PET and thankfully after being refered to my ENT Doctor, finally have a name for this nusance. He pretty much told me up front that the medications probably wouldn’t help but tell me to try something that sounded very strange. He said to go to a pool or jacuzzi that is chlorinated scoop it up in my hands and suck it up through my nose until it reaches my mouth and spit it out and do it a couple times. He says there is something in the chlorine that bulks up the tubes. I thought he was kidding but he said he saw more success with that then with surgery. It’s worth a shot. I’ll let you guys know how it goes
That sounds incredibly dangerous but if it works, I’m willing!
I suppose it has to do with salt in a way. The only real relief I’ve had is when I use a saline rinse through my nose. Yummy… and coffee definitely makes it worse. I’m cursing myself right now for drinking two cups of the stuff this morning and is completely ruined my day.
Can you drink decaf coffee???
Hello,
I have had the same problem as all of you for roughly the last five years. I have noticed it becoming increasingly worse in the last six months. It happens every day and it is VERY frustrating. I’m embarassed to talk every day. I know my face and voice look and sound funny when the eustachian tube opens. Have any of you heard about the collagen/cartilage injection surgeries? I’ve only been able to find a little bit about it through the internet.
Thanks
Im thinking of getting this surgery as well.
I have had the injections. It helped with the autophony but not with the palatal clicking.
Just found this Japanese doctor’s page on Facebook where he does give some great advice… or at least more than your average doc. It’s not all that active anymore:
https://www.facebook.com/pages/Patulous-Eustachian-Tube-Sympathetic-Nerve/231436096880121
Apparently Jia-Wei-Gui-Pi-Tang (a calming herbal tea from China) has shown evidence of working wonders.
Hello !
I had this same problem .
I always played sports, but at 16, when I practice karate, I began to feel this problem . It was like the air went out of my ears, was released very bad. This happened just in training, when I began the exercise.
I went to the otorhinolaryngologist doctor and he told me to look for a cardiologist, but he said that this should be seen with one otorhinolaryngologist…
I did not know what to do and went looking on the internet. I saw a post where a specialist this problem related to weight loss and I was very skinny. And I believe he was right, because with 1.80m I weighed 63 kg and was underweight.
Today, after eight years, I returned to training. Now I’m fatter with 80kg and have the same height . Thank God I’m not feeling anything.
God healed me is what I can tell. I also gained weight and that helped too.
I wish you all healing and try to see the issue of weight gain .
Sorry for the english.
I liked that ( God helped me) and I am waiting for this miracle. As I suffer the same PET.
Hi everyone, Sorry to hear how painful PET has been for everybody, but glad to know that I’m not the only one (even though it has felt like that for quite some time).
I have suffered from PET for about 10 years now, it was only in the last 12 months or so that an ENT mentioned that it could be PET (But didn’t seem overly concerned or helpful).
I am always hearing my breathing and my voice in my right ear but sometimes I’ll start hearing it in my right and left ear at the same time. Sometimes I even hear my heart beat. This is the source of great frustration in my life and stops me from talking with people and makes it very difficult to pay attention to anything when there is a constant wooshing sound with every breath.
The doctors I’ve seen only seemed to think that it was a sinus issue and just gave me nasal sprays. And anybody I spoke to about it would just brush it off as though it didn’t matter even in the slightest bit.
But, Finally an ENT suggested I look into PET as it was most likley the issue.
YES! Finally, my own personal hell has a name: Patulous Eustachian Tube.
Anyway,
After a lot of internet searching, Looking at medical research and any kind of herbal treatments/remedies, I stumbled upon a video on youtube of a man who claims he has healed his own PET with some exercises:
http://www.youtube.com/watch?v=NhKyJqERcF8
I have just started these exercises to see if it helps and wanted to share it with others who could hopefully benefit from it.
Thanks for reading this little summary of my struggle with PET (Sorry it was a bit long).
All the best.
— Jeff
This may be way out of left field, but does anyone also have troubles staying sufficiently hydrated or any sort of kidney issues? I’ve had some intermittent kidney pain for some time and haven’t been able to figure out what it is from (with Drs.) but I wonder if the two things are related. In my memory, they started around the same time.
Just curious.
I have PET as well and was working with a doc for a while who was willing to experiment with me to try to figure it out. We agreed to use some estrogen drops in my ears for a while to promote the growth of fatty tissue on my eustachion tubes. It worked wonderfully, but the side effects of the estrogen so close to my brain were too much, so I stopped using them after about 6 weeks. (I’m generally sensitive to artificial hormones such as birth control, etc.) The positive effect has persisted for a while…its been almost a year, I think since I stopped…but I think I need to do another round of treatment again now as I’m starting to have symptoms again. Best of luck to everyone with this as I know how frustrating it can be.
Hi Taryn, This all started with me during pregnancy. I’m still pregnant and this is ongoing, currently with a retracted ear drum.
Coming from a background of illness and medical problems I knew IMMEDIATELY to get second opinions and to looks for personal stories online so I am grateful to read yours.
You may want to look into natural estrogen boosting supplements or cremes used to treat postmenoposal women. This may be a better, more natural alternative to the synthetics.
Taren,
Can you let me know how these drops were applied in your case? Was it up through the nose or down the ear canal?
Aaron
hi life in neon (and everyone else):
… how´s everyone doing? if anybody’s finding any new ways to get relief, please do update us!
best of luck,
pete
This happens to me from time to time, usually after exercise or if I haven’t eaten for a while. For a while had low blood pressure and it was worse, so I thought it might be related to that. It usually improved if I ate salty foods. I read that sometimes it is related to dehydration or weight loss, so that’s something to consider, too.
hello
i had a PET from last 3 years started with my right ear reason was
that my ENT specialist drained my sinus as it had fluid in it and i use to had cold almost all year around.
regret that .
but now from last few days my left ear showing the same symptoms.
i am so scared .. don’t know war to do? how to save my another ear .
i don’t drink coffee cutter sugar from my diet nothing helps .
Jeff,
I was wondering if you we’re able to get any relief from doing the excercises you posted from the you tube video. I’ve been suffering from PET for two months now its taking over my life. I don’t quite understand what he is doing in the video and wanted to know if you could explain.
Thank you,
Gurpreet
I started having PET last year after an ear infection. It’s not as worse as most of the comments I’ve read since I get relief from putting my head in between my legs and I don’t always have it. It just comes and goes and it’s mostly in my left ear. However, I do understand the difficulties. It is such a pain since it strikes me at almost any time of the day. I can’t always put my head between my legs so I have to wait until I get to a private space (like a bathroom or my office). I hope they find an effective cure for this that doesn’t cost much.
Just wanted to share with all of you I finally have an appointment scheduled to see a Dr. Poe over at Children’s Hospital in Boston. My ENT doc’s over at Tufts New England and Boston Medical (I have had ear surgery at both places) have agreed that he is the guy to hopefully help me and also officially DX my PET. I personally have all these symptoms and then some ( my breathing is significantly effected, possibly due to my deep sniffs and pauses in my regular inspiration/expiration to “fix” my autophony), but it is in a little over a month away and I have been having a lot of discharge from my ear due to my last ear surgery being a canal wall down ( previous two were canal wall up) so I hope this is normal and not another infection that will need to be treated with more rounds of antibiotics. Can anyone explain what happens during this visit?
lastly,
Does anyone else use headphones? Or notice when you listen to music, talk on the phone, put ear buds in, that the vibrations, or the volume of it causes a flare up of symptoms? Is anyone else in pain, or has had other surgeries relating to your chronic ear problems?
Stephanie – did you have success with Dr. Poe?
Hi Stephanie, can you let me know if Dr. Poe helped?
Hi Stephanie!
Seeing as though you wrote this in 2014 – I am doubtful that you will receive this but I am hoping you do!! I was diagnosed with PET “finally” in 2018 after years of doctors thinking I’m crazy, looking in my ears saying “everything looks good” and doing hearing tests and “pass with flying colors”. I finally found the correct ear doctor who knew about this and referred me to Dr. Poe and a Dr. out of Yale (currently i cannot even remember his name), as they were the only two surgians in the country that even did the surgery. Dr. Poe was booked out like 8 months, and there was an issue with my insurance, so I had a consult at Yale with the other Dr. Long story short, I received the surgery from him at Yale in 2018 (my left ear). It helped tremendously, It was probably 90% cured! He told me there was a 60-67% success rate or something so I was nervous about it but I didn’t even care, I needed to have some relief.
It is now 2021, and the past 8 weeks or so, its been slowly coming back 🙁 and pops open a handful times a day now. Doing continuous sharp sniffing to make it stop..
I was wondering, have you had success with it???
Hi All,
I empathise with all of you deeply. I also have PET and have had it for the last 6 months. I get all the symptoms, ear fullness, tinnitus, popping, crackling, autophony you name it. I’ve gone through anxiety and depression but am now coping and I want to share this because we can’t let this beat us guys. We have to get on with our lives, love, laugh and enjoy it as best we can. Here’s what I have done to help me cope.
1) I wear hats, headphones and have a desk fan at work and at home which blasts cool air onto my ear which helps mask the discomfort of the stuffed up ear. I massage my ears as and when I want to, I lie down when I feel I need to.
2) Talk to those who will support you the most. Make them understand what you go through on a daily basis. For me thats my mum. She’s the most amazing woman ever, she’s been there for me since the beginning, been my shoulder to cry on when it gets bad and is always at the end of the phone line when i need to let off some steam when it pisses me off.
3) This is important. I don’t let it stop me from doing any of the things I enjoy. I just spent two weeks in Japan seeing the sights – it showed me theres so much to live for – Japan is an incredible country, its beautful, interesting and very peaceful in places (we spent some nights in a buddhist temple with an outdoor natural hot spring… soooo relaxing). I still go and play poker, I still see my friends, I still play video games (good distraction), If I want to do it.. i do it.. life is too precious to let a medical condition ruin it.
4. I listen to meditation music to help calm me. Check out Deepak Chopra – he is awesome.
5. I always have options on the horizon. I keep up to date with the latest surgery for this. Check out Brian Rotenbergs paper on his shim insertion for the treatment of autophony.. it looks promising and was only written this year (June 2014). I keep in touch with Dr Poe, Dr Rotenberg and the eustachian tube institute to stay on top. One day they will fix this.
6. I go to church. God can take this away from me I know it.. and he gives me the strength to deal with it when its bad.
7. I eat haha. I love food and it helps take my mind off it. I used to worry about calories and looking trim.. now I eat what I want cos it makes me happy.. bring on the burgers 😉
8. I get massages and I take hot baths – these help relax me and stimulate other senses other than my ear.
9. I help others. I actively look out for opportunities to help others no matter how crap I feel at times. this could be giving a homeless guy my sandwich, helping push a broken down car to a safer place.. whatever.. my mantra is to make just one persons day every day and that makes me feel good.
I guess my point is.. there are ways of coping with this.. find yours.. don’t let yourself become miserable with it.. whats the point? I’m not saying its going to be easy but do as much as you can to help yourself and you’ll see life isnt so bad after all. We all get dealt a hand.. unfortunately ours is a pretty lously one at times.. but it doesen’t stop us from doing things we used to and still do enjoy.
I hope this helps people. If you want to get in touch or even meet up I live in the UK and would love to meet others.
Cheers,
Aaron
Hi Aaron,
Fellow UK sufferer of PET FOR 20 years now and have read tons of posts and research articles but have to say your post is the most uplifting I’ve heard!
Good on you for posting, it just cheered me up as I am having bad time with ears at the moment and although it’s going to be hard, you’re right we can’t give up!
Much appreciated M.
How have you been doing? I have been suffering for a few months now. I know you wrote this years ago but it helped me to start thinking outside of myself. I am trying to finish my prerequisites for the nursing program and am having anxiety worrying that my life is over..I am 43 and finally able to go back to school…..
Thank you so much for this by the way. It has made me feel valid when I feel like nobody is listening
Hi all. So glad to come across this website! I’m 28 and have been suffering through ear problems for about 4 years now. I’ve been to the ENT countless times and have had every test done under the sun to determine the problem, but to no avail. My ENT actually told me there was nothing more he could do for me and to not make another appointment because all the tests came back normal.
it’s so nice to finally have a name for what I’m suffering with. What I’d like to know is why after searching for 10 min online I was able to find a diagnosis that the ENT couldn’t tell me about!!
My left ear has progressively gotten worse in the past year. What started out as only being an occasional popping and fullness in my left ear has now become painful and constant. as I sit here I have such a headache due to the fact that my ear has probably popped 100 times today. Even when it pops, I still don’t feel any relief from the pressure build up. Actually, I sometimes can’t decide which is better; pressure build up without popping, or popping until the ear becomes patulous and no pressure.
has anyone else noticed a lack of sensation in the affected ear right before your symptoms flair up? For me, I can always tell when my ear is going to become patulous because I lose the sensation of swallowing on my left side. I can feel the muscles working on my right side, but not my left. Also, when my ear does become patulous, I have a hard time breathing through my nose because my nose starts running and doesn’t stop until I lay down to releive the symptoms.
Jeff, I too have seen that video and was wondering if you have had any luck with it?
Stephanie, how did you appointment go?
One last thing, has anyone been on an airplane with this condition? I love to travel but have been too afraid to get on a plane like this!
Sorry all for the long rant, but it’s so frustrating! Any help would be appreciated!
hi
have the same problem in right ear. as u asked about traveling, i travel with this many times no problems at all.
didn’t use any ear plug at all just kept my face to side (any side) while takeoff or landing.
cheers have fun
Hi everyone,
I’ve been suffering from this in both ears for years. So long that I don’t know when it even started. I’m 19 now and in college to become a teacher, and I’m struggling to follow through because I can’t stand talking anymore. It’s basically ruined so much for me. I’ve seen two ENT’s and I got tubes put in thinking that it would help, but it did nothing. I just don’t know what to do anymore. I’m depressed and frankly don’t know if I can deal with this for the rest of my life. Has anyone had any success or relief from anything other than lying down? That’s the only way I ever get relief since both my ears are constantly this way and never feel better. I’ve done a lot of research since I discovered the real problem and I’m looking into trying to find estrogen drops or take Potassium Iodide supplements. I just don’t know what to do anymore. I wouldn’t wish this on anyone, but it does help somewhat knowing that I’m not alone in this. Hopefully one day there will be a 100% cure.
Breanna,
You are the first person I have seen that suggested the potassium Iodide Supplements. I have PET as well and the specialist in my area prescribed them for me and they did not make any difference. Did you have any luck?
I have had this problem for about 3 years now. It affects my personality by making me less patient and frequently on edge.
I believe mine started after taking my 2 young Son’s on a ride at a fair. Following that I suffered for many months from severe vertigo, and the increasingly worsening PET.
I find the comments regarding caffeine and coffee very interesting as I own and operate a Cafe. Not only do I drink a couple of coffees per day but I breathe in and probably absorb it every day for the past 3 years.
This week I’m going to be trying acupuncture and I intend to try auvedic treatments later this year also.
I usually try to explain to people that this ear issue is like living with your head inside a plastic bucket, talking inside that bucked, having everyone else talking inside that bucket along with 1000 crickets…
Good luck all. Remain calm. Find you’re own peace and quiet time. And if you find a definite and permanent cure, please let us all know.
Hey,
I’m clearly quite late to the conversation here but I need to talk with someone else who has this. For the last half a year or so, I’ve had this, but I just found out what it was today. The main problem is that there is a rumble in my right ear when I breathe with my nose. I have/had tonnes of other symptoms, tinnitus, hyperacusis (that was really awful), fullness etc etc. There just seems to be no real cure to it either.
The worst part is, my whole life revolves around music and sound. I study music technology at University, I DJ, and I produce and create music for hours a day (until the last few months, that is). There’s not a lot in my life other than music, and I try really hard not to let it get in the way but it gets to me every day.
Has anyone had any kind of relief/solution to this? At the very least I am glad to have found this page and seen that other people are going through the same thing. I’m a patient person most of the time but I am almost at the end of my tether.
Like everyone else I’ve suffered from the affects of PET and have so for over 8 years now. When my ENT diagnosed it he literally just shook my hand and said good luck there’s nothing we can do for you (devastating) I do have a process that offers the most relief and last the longest. Some days it lasts the entire day plus. It’s the power of the netti pot. I have the squeezable style, but even the tea pot looking pour style works (squeezable is just a quicker process) the trick is DO NOT do both nostrils or the tube’s open all day. My PET affects my left ear so I netti up the right nostril out the left. (Netti the opposite nostril of the affected ear) Use the whole bottle (pot) with 2 salt packets. Blow nose after to clear excess saline. Enjoy the relief (even if it is temporary)
I believe I am also a sufferer, although its hard to be taken serious by the doctors. I had a horrible cold and my hearing went muffled, 4 weeks late my hearing continues to be muffled particular bad the right side, I have tinnitus anyway which makes it worse. i am constantly dizzy no sprays, drops antibiotics decongestants or steroids have worked. My job has been affected I talk a lot and I can only here myself and not other people. the fullness in my right ear is unbearable. I feel like I have an entire ocean in my ear and the worse thing is if i tap my forehead eat chew or bite my teeth together i have a hollow sound that won’t go. Cant believe i have to live with this permanent disability for the rest of my life
I’ve had this for 5 years. It came on suddenly when I moved to a humid climate. I thought it was allergies…of course it wasn’t. I have trolled blogs for years. I tried patulend drops once, but it burned so much I was hesitant to do it again.
I randomly read about a guy who found relief by Overhydrating. I tried this and it worked for me. It increases your venous pressure, which closes your eustachian tube.
This is not a cure. It likely won’t help everyone, but it works for me. I drink a liter of tap water (still water works best, carbonated water doesn’t work for me) as soon as my ear pops open. I drink it VERY FAST. It takes less than 10 min. Sometimes less than 5. I wait 15 minutes and drink another half a liter. If that doesn’t work, I wait 15 more minutes and drink another half a liter.
I accidentally poisoned myself with water once trying to make it work. That can easily be fatal. This measured method is what I’ve found helps me the most without causing water poisoning.
Your body can process about a liter an hour, so it is easy to go overboard. Be very careful & find out the symptoms of “water intoxication”.
After my second full liter, I wait 20 minutes an then drink water 8 oz at a time with breaks of 10-15 min, up to the third liter, if my ear hasn’t closed. Usually it closes after the first liter – liter and a half.
I wait an hour after the third liter, if nothing has worked. Then I start from the beginning.
So far, I’ve been able to close my ear with 1-1.5 liters unless it’s very humid outside or unless I’m exercising. I almost never make it to the third liter that quickly, as my ear closes.
If I can close it with a liter, I drink a liter every 1.5 hours to maintain it. I usually only need up to 6 liters a day. And access to a bathroom at all times, obviously.
I find that pounding a liter as soon as I wake up can prevent my ear from popping open for at least an hour or two unless I exercise.
I’m throwing this out there in case I can help anyone. Before you try this, please research water intoxication, as it’s easy to do and is quickly fatal. I was so hell bent on closing my ear that I poisoned myself. It was horrible.
Bending over or hanging upside down increases venous pressure around your Eustachian tube, which is why that helps. Drinking enough, but not too much, still water may have the same effect, as your blood volume & venous pressure increase.
With a measured approach I’m able to manage the problem nearly every day. It took 4 years to find this strategy.
I hope you can find some relief. Good luck! I’m thinking of all of you. This is a horrible condition to bear.
Hi there,
This a wierd condition. I had it for about 2 years and it stopped for 2 years and a bit more…. and now Is started mildy again.
When I first had it, I was going through an stressful time, so I guess that is a factor… I read a lot of things online and start doing most of the advices i found like: keep me hydrated, trying to relax as much as possible, practice yoga, lay down for 15 min 3 times a day, doing jaw exercises like opening and closing the mouth, also moving it laterally, neck and head excersises, pepermint candies, chicken soup, also reducing alcohol beverages and chocolate intake, . I guess most importantly having a positive attitude towards this experience, having a positive mind it will be healed.
I think it all helped, since after a few months of doing everythin the condition star to subsided in my case and didn’t happen for more tha 2 years,, and now that it happens again I will start doing all those things again, hopefully to get well once more.
Best wishes,
Caro
So happy I found this site while googling estrogen drops. You all understand me and the struggle! I do not want to take the drops as I do not want to gain weight. I struggle daily with weight and honestly don’t know which is worse – the PET in my left ear or an additional 15 pounds or so.
I have been able to somewhat control the PET in the last couple of months. I drink water like my mouth is on fire – that seems to be the most beneficial. I’ve narrowed down the “breathing hour” as I call it to pretty much the morning. I wake up after not drinking for several hours and usually exercise in some capacity for an hour. Within the next hour – the symptoms appear but I can usually chew gum and drink it away after about an hour. I do drink coffee after exercise – but now after reading this – I will eliminate the coffee.
I do not want to take the drops – perhaps I will try the tea – has anyone else had successful results?
Sometimes I pray for a head cold. It is the only time I can go an extended period with no internal head noises.
I
While I don’t suffer from PET, I did suffer from a condition where my eustachean tube “flaps” would stay open after exercise, similar to PET although mine would evenually get back to normal.
I wound up getting relief from a specific type of chiropractic care called “upper cervical chiropractic” or NUCCA. In a nutshell, it focuses on the top two bones in your vertebrae (atlas and axis) and realigns them properly. The results are quite amazing as it basically unpinches any nerves that may be interfering with proper body function for a variety of ailments. I found it to attempt to resolve a minere’s disease diagnosis, and while it has helped to reverse those symptoms, it had a binus effect of fixing my open eustachean tubes after exercise as well. Worth looking in to if you have tried everything else. There are many NUCCA chiropractors across the US.
I was officially diagnosed with patulous eistachian tube today. Just wanted to thank you for this blog post because this is what confirmed it for me that I had PET. Now that the drs. Are on board I will try out the different treatments and possibly surgery as mine is rather advanced. Im just relieved I was right and it has a name. Thanks again! I had posted in this thread earlier over the last year or so. Feel so much better knowing I’m not alone.
Stephanie
After once having suffered from this regularly and now rarely experiencing symptoms, I feel obligated to share that my symptoms drastically decreased and situation improved almost immediately after I quit taking the birth control pill. Believe me, I have nothing against the pill, and don’t think people should flippantly stop taking it, but it’s been about seven years since I quit the pill and seven years since I’ve really experienced PET (and I was ready to go to Boston to have the surgery). Something to consider if this might apply to you or if it helps you troubleshoot in some way.
Lauren, look up SCDS Superior canal dehiscence syndrome .
I have this problem too. Does anyone else sometimes feel like you can’t hear yourself talk from the ear that’s affected? I have that and then the echo like it’s too loud and sometimes hear myself breathing loud. Also does anyone else at points get a sore throat for a while and lose your voice too if talking a lot? I have sinus issues also and allergies but my nasal spray almost seems to worsen this condition.
” I drank (with water) & SNORTED some BLACK PEPPER, and the PET went away. Infusing in water & spraying could be a better option. Trying this is your own responsibility…
Folks:
– Too much clogging foods in the body bring it out of balance, create mucus & infections, which can result in PET.
– Consider taking care of your kidneys, kidney problems affect the ears (chinese medicine). If you’re stressed you get PET.”
Not necessarily a cure, but a treatment that works… Here’s what you do. First invest in a Neti Pot, available either locally or online. Amazon has them for around $20. Get one that is ceramic and looks like a miniature Aladdin’s lamp. Skip the ones that look like a teapot with a bulb on the tip of the spout.
In a Pyrex measuring cup, heat one cup of water until it feels quite warm when you stick a finger in it. It will cool slightly while you mix in one-quarter (1/4) teaspoon of salt and a small pinch of baking soda. (Be precise; too much or too little salt will be uncomfortable.) Stir until dissolved. Pour half of the liquid into the Neti Pot. By now the mixture should be barely lukewarm. (Note: If your tap water isn’t the greatest you might want to boil it first, then let it cool and reheat to the proper temp. Microwave is fine.)
Lean over the sink and bend your head sideways. Place the Neti Pot spout tightly against (but not inside) the uppermost nostril and slowly pour in the liquid, allowing it to drain out the lower nostril. Do NOT snort it up your nose. If a little goes down your throat just spit it out. Pour the rest of the liquid into the Neti Pot. Turn your head to the other side and repeat with the other nostril. This takes a little practice and can be messy until you get the hang of it. Gently blow your nose when finished.
I find that this immediately normalizes the autophony caused by occasional PET. My problem is due to allergies, post nasal drip, and periodic TMJ. It might not be effective if something else is the cause or if the problem is long-standing, but it’s definitely worth a try.
I was just diagnosed with this in my right ear. ENT Dr knew right away when I told her about the echo. I am s flight attendant and have no problem flying. Dr. Told me to try cayenne powder in saline nose spray. .25 to 2.0 tsp in 45 ml spray. It is meant to shrink est tube. Like I said. Just found out yesterday and tried spray once. OMG. It sure wakes u up. I started with .125 tsp. And will work up to 1.0. I can’t imagine having it in both ears . Will let u know how the spray works. Ron
I developed PET about a month ago. Coincidentally, it arrived about the same time I developed a very stiff neck. I’ve also had a problem with TMJ for the past several months. I am convinced they are all related.
Stress = tense, sore shoulder and neck muscles = TMJ due to jaw being pulled out of alignment by tight neck muscles = potential ET dysfunction.
This makes much more sense to me than the absurd theory that weight loss causes the ET to become too “skinny” to work properly. I wonder what idiot thought that one up. The medical profession is fond of barking up the wrong tree, and this is no exception. If weight loss were the culprit, PET would be very common. Instead, it is quite rare. My ENT said he sees maybe 3 or 4 cases a year. Yeah, he did ask if I’ve lost a lot of weight recently. For the record, I have not. I am of normal weight and have no problem keeping it there. I do have a lot of stress in my life, however, and am frequently battling muscle and joint pain that seems to settle in my neck and upper back.
IMO Allergies can also play a role, as does too much time hunched over a computer (which I’m trying not to do while I type this). I’ve had allergies for years, although I try to avoid what triggers them for me. Strong coffee can cause ear problems for some people, but I don’t drink coffee. I have one cup of green tea in the morning, and that’s it. Maybe even that is too much caffeine.
My neti pot worked for a while, but the results don’t last as long any more. I am currently using PatulEnd but it’s too soon to know if it will work. I don’t like it because it burns my throat. Hopefully some of it is getting into the ET. I’m also doing Egoscue exercises for TMJ, and to loosen my tense neck, shoulder, and upper back muscles. The ENT did offer a bit of hope. He said PET usually goes away on its own. He’s a fairly conservative sort and was reluctant to prescribe anything. He suggested Nasacort, which is available OTC. It’s probably about the same thing as PatulEnd, but I think PatulEnd is preferable since it contains no chemicals.
For those contemplating some sort of cockamamie surgery for PET, please keep it as a last-ditch resort. The MD’s don’t have much of a clue what causes it so it stands to reason they won’t know how to fix it. Chances are good that any kind of ET surgery will only cause additional problems.
My ENT finally put a name to my condition and explained what was going on. Just got Premarin drops (expensive) and eager to see if that helps. After being told weight loss can cause Patulous ET i realized it all started several years ago right after a significant weight loss. And I can assure you I am NOT gaining it back just to fix the ear issue, so crossing fingers that Premarin helps. What a freaky little condition! In the grand scheme of things I realize things could be worse, but this has been making me crazy for YEARS! It really does affect your day. I can totally relate to everything you said in the blog. That is my life: not wanting to talk, constantly trying to equalize the pressure in my ear with muscle contraction, the insanity of hearing your voice and breathing inside your head all day. I wouldn’t wish this on anyone.
Hi all, I have had PET for over 20 years with all the symtoms you have described. My PET is always triggered by stress and is aggravated by weight loss. Interestingly my mother also has this condition and hers is triggered by stress as well. We both have generalised anxiety disorders. When you are anxious your body goes into fight or flight mode and this in turn causes the blood in your body to go from your extremities to your vital organs, its a survival thing. This takes fluid away from your head and as a consequence the opening to the eustachian tube in your throat…which means the opening does not close properly. It is a valve. This is why when you lie down the symptoms can dissappear, blood floods to the head engorging the tissues around the opening to the eustachian tube.
When I am relaxed I rarely get PET. I have found that a small weight gain combined with relaxation techniques really helps. The ideal would be to treat the root cause which in most cases is triggered by anxiety. I think this is a far better and a more natural way of dealing with the condition than surgery or meds.
Hope this helps.
Hi all! I suffer from crackling in my ears, and have for so many years now I can’t recall when it started. I had many sets of tubes in my ears when I was a kid, had my tonsils removed at 8, ear infections were commonplace for me. I grew up with a pool, so swimming was normal also. So, alot of damage from that, plus I shoved some of that wax plug stuff through my right eardrum when I was 10. That eardrum has scar tissue, both ears crackle all day, swallowing, eating, talking… I almost don’t notice it anymore. Is there any home remedy out there? I will not allow another surgery.
I knows how it feels. I got it these days probably due to a mandibular joint misalignment. Don’t know if you all have seen this exercise but I feel slowly it does benefit and it’s very encouraging. Hope you can try it and it helps. All the best.
https://www.youtube.com/watch?v=NhKyJqERcF8
Yes!!! It not only helped me, it completely fixed my PET. See my comment at the bottom of the page. The exercise is FREE. It doesn’t involve pills, nasal sprays, or medical treatment. I have also had problems with the TMJ (opposite side), but I really think it was long-term use of NSAIDs, specifically ibuprofen, that caused my PET. NSAIDs have been linked to hearing loss recently. It isn’t much of a stretch to connect them to PET as well, and possibly also to TMJ/TMD (which is a weakening and subsequent misalignment of the jaw hinge). I have been getting Feldenkreis treatment for the TMJ problem. It is helping quite a bit.
Hello PET sufferers…I am in the league with all you guys..Suffered now as a result of a bad cold, December 2014..Tubes are Open, never close…It is a daily issue, one that really gets me down..I could weep sometimes..I have really bad, almost daily, heat flushes, attacks, body sweats..I am 66 years old so I am wondering if this problem is causing heat flushes, sweats..Those are so bothersome…I had a mastoidectomy in 2015..A result of this condition..Anyone had this surgery?..My Ear Doctor, Specialist gives me no hope for cure…I welcome any e-mail replies..Thanks !!
Greta,
How did the Mastoidectomy help with PET if at all? My specialist too said there was nothing to be done for the disorder. Hence the Blogging!
I was finally diagnosed with PET after many visits to regular doctors and ENT doctors. I’m relived there’s a name for it and all but this sucks that’s there is no solution. For about 12 years I’ve had it come and go, usually for just a couple days and it would clear up and come back the next week.
Now it’s every single day for over 3 months, driving me CRAZY.
ENT still just giving me different nasal sprays and could not provide me with any steroids.
It doesn’t make sense because I have no caffeine in my diet at all, I stay plenty hydrated, I’ve gained weight not lost any 190 lbs., and I do light exercise nothing over the top.
I’m wondering if there’s anyone who has had surgery that has healed their PET.
Please there has to be someone out there who afforded it and went through with it.
T-tubes in the eardrum solves this problem (pressure is equalized). It’s a pretty easy procedure. Also, temporarily, for me, sniffing can close the eustachian tube (see: https://www.ncbi.nlm.nih.gov/pubmed/21659936).
Just stumbled across this thread while looking for PET connections with TMJ and any new discoveries on this topic. I’ve had a PET for almost 5 years. I finally saw an ENT in 2015. He referred me to an ear specialist in Nashville, TN. I had several tests performed to confirm the PET. When it was confirmed, surgery was listed as my only option. I had the surgery to inject collagen into the ET and hopefully “close” it down enough to rid of the symptoms. I had the surgery and my symptoms were relieved for 3 days. Then they returned. So devastating. They accessed the tube through my nose via scope and performed the injection. Since this did not work, the next and last option was to perform the surgery again. This time through a cut behind the ear and they couldn’t inject “too much” collagen as to not shut the tube down completely. I opted to not have the 2nd surgery since there was no guarantee it would work. I’ll be honest and admit that it’s still on my mind as this condition is absolutely horrible to deal with mentally. No one understands. You look and seem completely normal. Even physicians tell you that it’s annoying but not life threatening. I disagree. It can be as life threatening as addiction or any other debilitating disease. If anyone hears of new advances in this field, please share!
I have had PET for 7 months and am so frustrated. I have been to 3 ENT’s in Houston, none of which could diagnose it. Recently, I found a doctor in Ft Worth, who specializes in PET, Dr Dean. He studied under Dr Poe (Boston) and has injections/surgeries which are effective treatment for 80% of patients. I am going in a week for my evaluation and treatment, and am hopeful for some relief. It is out of network, a bit worried about the cost, but worth trying.
This has worked, recently, for me.
My left eustacion tube likes to open around 10:00 a.m. everyday. Like a lot of people, tilting my head to the side has helped for a bit. I also hold my nostril closed on the good side and exhale through the affected nostril-side. I do this perodicaly during the day, especially in the later morning.
I thought this might be associated with acid reflux at one point because it never happens when lying down, so I tried baking soda, a half teaspoon, in the morning. Kinda worked…
I now use a saline nasal sprayer and douse the bad nostril with 10 or more sprays while pointing my head down, up, all around. I hold the good nostril closed and just saturate the bad side until I can feel it doing down my throat.
I go to the VA for my health care and they tried putting cigarette paper on the ear drum. Twice! I now know what a sharp stick in the ear feels like. All to no avail; didn’t do a thing. They asked me if I could live with it…
So, I am trying the saline dousing in the bad side nostril and, so far, it hasn’t come back. So far.
Hey I’m wondering how has continuing the nasal spray worked? Thanks!
Greetings, dear people. Within your posted comments you have described my suffering as well. There is something healing in knowing that others have gone through the same baffling experience. Among my many challenges brought on by the development of PET over the past ten years or so (constant and severe in my right ear and relatively mild in my left) the greatest source of my frustration for me is having the sense that the medical community, especially the ENT community, doesn’t care. Thank you all so much for your contributions to this conversation. I feel understood, and so much less alone. – Paul
I’ve had PET off and on for a little over a year now. I initially ordered PatulEnd and it did work after about 2 weeks. The PET was gone for quite a while and then returned following a bad cold I had a few months ago, with a lot of nose-blowing.
I completely disagree with the idea that PET is caused by weight loss or exercise. Half the people in the country are trying to lose weight or exercise at any given time, but very few ever get PET. Correlation isn’t causation, and the medical profession should know that. I did not lose weight and the only “exercise” I do is very light, such as stretching or walking. I also do not drink coffee. However, I do have allergies, which I have ignored off and on, possibly to my own detriment. I have noticed lately that the PET seems worse when I eat a lot of bread over a period of a few days, and I know I’m allergic to yeast. I also have longstanding problems with postnasal drip, TMJ, and tight neck and trap muscles. I suspect those things are somehow the real culprit. I am going to go a Feldenkreis practitioner to address the neck/trap muscle problems. I did this previously and am thinking it might have helped get rid of the PET the first time around, even though that wasn’t why I went.
I have ordered another bottle of PatulEnd since it loses its potency after about 6 months. I was using the old bottle and wondering why it didn’t work like it did previously, then I noticed it had expired months ago. Dr. DiBartolomeo (who invented PatulEnd) swears it works if used properly. The downside is that it’s quite expensive. I’m waiting for the new bottle, which I hope will come today.
Meanwhile, I find the PET annoying and it does affect one’s sense of wellbeing, but you CAN get used to it. You can get used to almost anything. It just takes a bit of attitude adjustment. In my case, the PET tends to come and go during the day. Sneezing gives me brief relief; so does lying down. It goes away completely overnight and for quite a while into the next morning. I would definitely NOT opt for any kind surgery, which sounds like a real crapshoot in my opinion, and could potentially cause worse problems. My ENT said PET usually goes away on its own, “usually” being the key word, of course.
I’m sorry Shary, but you have had PET for a little over a year. You are not in the position to say that we can get used to anything. It’s just awful and I’d rather live in pain than have PET. By the wat: I do know pain, I also have chronic migraines.
I have had PET for 22 years. I live in Europe and what I don’t understand: in the USA are a variety of clinics that offer surgeries. Why don’t the people on this “blog” go to these clinics? They have very good references.
I have been suffering from PET for almost a year and It is comforting to know that there are other people that can relate to the agony I am going through. I was getting used to the autophony and no longer being able to sing Car seat Karaoke, but then I began to have frequent dizziness spells. Has anyone else experienced this with their PET?
13-year PET sufferer and I have reached my wits’ end. It came on rather suddenly and has been constant (100% open all the time) ever since. Vertigo, voice/breathing echoes in my ear, the whole deal. Over the past 3 months it has gotten worse to the point that just walking on the concrete creates a rumbling in my ear and I can barely speak above conversation level due to the pain from the noise.
I have been to, probably, 5 different doctors in Southern California, including Loma Linda University and House Ear Clinic. LLU just put a tube in my ear drum (the opposite of what I needed) and HEC prescribed me Premarin (which, by the way, was a $200 bottle of horse pee just so you know). Nothing worked. I am back on track to try to find a cure for this and I’m willing to travel to wherever I need to go but like everyone else commenting here, finding doctors who can actually help is very tough. Even some so-called “specialist” sites I’ve seen mistakenly say that PET is the closing of the tube (erm, that’s actually ETD not PET). And with the current state of health care in the US, any help from a specialist means a lot of money out of pocket.
I also call BS on theories about weight loss causing PET. I do think there’s a link (cause or effect) with TMJ/TMD and I think there’s a link to esophageal conditions because I also suffer from excessive phlegm and I’ve been tested for GERD and post-nasal drip and I got the runaround from 4 different doctors there as well.
I wish there were more resources for those of us suffering from the PET (and believe me, it is SUFFERING). Even the person running this blog stopped commenting here.
Just had my own diagnosis of PET. So grateful there are other people somewhere out there who suffer like I do. No one in my life can relate. My family and friends have no idea the struggle. I have passed up on so many opportunities in life because of being self-conscious of my speaking.
Also, the doctor too wants me to get a CT scan and start using estrogen drops in my nose which sounds extreme. I don’t particularly believe in taking a medication for only a temporary fix and not understanding the root of the problem.
Just for statistics sake, I am a 27 year old white female, suffering for 5 years. First time it happened was when I was working as a waitress and it just popped out of the blue. Now I suffer about 1-2 hrs a day, maybe 3 times a week. Always when I exercise. Always when it rains outside. I used to love the rain, but now I know any sort of change in humidity or temperature drops will result in ear popping. I have also never had any large weight loss. My weight usually stays between 145-160 for the past ten years
The only sure relief I get is laying my head down on the side with the popped ear. 15 minutes usually provides relief for the rest of the day. My doctor confirmed this happens because you cause blood to rush towards that ear which puffs up the tube enough to close.
I have been taking a plethora of medications. Mostly allergy meds and I’ve found that Mucinex Maximum strength pills (the medium sized hard red ones) seem to make the popping last a lot less.
I do not want to take the estrogen drops. Interesting that only one other person so far has mentioned the birth control. My doctor nonchalantly hinted that perhaps birth control might be a culprit, and I have been taking mine for 5 years now, and I seem to remember my symptoms starting around the same time. Very close timeframe but I can’t quite remember if the popping starting a couple months before taking birth control or after. Either way, I’ve been wanting to quit taking the pills for awhile so maybe I’ll see if that helps.
Stay strong everyone! The doctors obviously do not have concrete treatments for this condition so I would be wary of any surgeries or medications.
Bye fellow PET peeps!
Okay, as a follow-up comment, I have found a way to cure/heal my PET. It isn’t surgery and it isn’t PatulEnd, which only gave me a chronically stuffy head. Here is a youtube video made by a guy named Matthew Baker that shows an exercise that actually works:
https://www.youtube.com/watch?v=NhKyJqERcF8
The video isn’t the greatest quality, but what Matthew is doing is alternately constricting and relaxing his throat. Watch his Adam’s Apple. It is moving up and down. It might take a few tries to get the hang of this, but then it’s pretty easy. Put your fingers lightly on your throat so you can feel your Adam’s Apple moving up and down. Do 5 sets of 5 three times a day for a total of 75 every day. Take a breath between sets because you won’t be able to breathe while you do it.
I won’t get into my theories as to causes of PET. They probably vary. In my own case, I’ve had problems with both ears since childhood–long before I developed PET. I am guessing this simple exercise somehow retrains the entire ET mechanism as well as strengthening the surrounding muscles. It will take a week or two, but I noticed that my PET gradually became less severe and less frequent. After about a week of doing these exercises it disappeared altogether.
I should add that my PET became quite severe since I last posted. It would pop open after getting up in the morning and remain wide open until I went to bed at night. This exercise fixed it. Do yourself a favor and try it before you let some quack pour Teflon into your ET in a misguided effort to “fatten” it up.
Have you completely risolved the problem with this exercise?
So it’s more than 2 years on, and I’ve just arrived here upon this. Is it really the end of the road for all of us? I’m closing my throat as I type this – does it really work? My ears pop with each rep – does that sound right? after my 22 years with this, just unbelievable! thanks Shary!!
hey Sharry, I dont actually quite get it about the exercise, is it resembling some kind of swallowing action but not actually fully swallowing? I put my tongue on my upper palate and do the swallow action, is it that kind of constricting and relaxing of the throat muscle? I have the same problem as you, PET during the day, some moment after I woke up(sometimes minutes after I woke up or sometime in the afternoon after I have my lunch, big yawning, talk loudly and etc) and then it will recover right before I sleep at night or when I have lying down for a prolong period of time.
Hi Shary,
I just came across your post and really pleased to hear it worked for you. I wondered if this exercise is still helping you.
I am saved by PatulEnd after 2 years of suffering from hearing my own voice and heartbeat. It’s been 2 years of normality. I think its worth a try. I’m in Singapore and I chanced upon it from forums. I gave it a shot though it’s expensive to shop here but better than going from ENT to TCM
I had this problem when I lost about 10kg 2 years ago. I went from 52kg to around 43kg and kept hearing my own breathing in my ears.
It became significantly better when I regained the weight, and I have since read a lot of literature that weight loss and insufficient fats is a contributing factor.
Hello all,
I have been dealing with PET for about 6 years now- mostly in my left ear. I love to sing and have been singing in a church choir for about 20 years and in a quartet group for the last 10. Last year, I finally had to give up the singing because my own voice seemed so loud in my ears that I could no longer hear the others. When I am loud, I feel the pressure of my own voice pushing up against my eardrum from the inside. I am also a teacher and have taught for 27 years. This last year being the hardest, noise wise. I feel pressure from my own voice in my ears, and if I am working in a noisy classroom environment, I sometimes need to just plug my ears and wait a few seconds for the pressure to reset itself and then just slowly release. This plugging and unplugging of my ears is the only way that I have found to relieve the pressure within. When I talk in a very quiet voice, I don’t hardly notice my voice as a problem, but as soon as I begin to approach a normal loudness range or sing, then the pressure builds.
Being a teacher, I don’t have to talk much during the summer. What I hadn’t noticed was that while my voice still came across as loud to me, some other other symptoms that I was experiencing- such as hearing my heart beat at night or not being about to hear cars behind me over the sound of my own body while jogging- were very slowly going away. After a month of being in relative quiet, my quartet group had a practice for a song that we were going to sing in a couple of weeks. Within half and hour, my ears felt damaged to the point of feeling full of pressure and continue to feel so all this week. What I sensed was that a slow improvement had come over my month of quiet. I will begin teaching the new year again in two weeks. I plan to ask for a microphone and speaker so that I, hopefully, won’t need to “push” my voice.
I have tried the exercises from the website listed in the earlier posts with no avail. My condition is with me 100% of the time. The only noticeable break I get is if I stand with my head bent over between my knees. Not a good teaching posture. In the classroom, I may try an ear plug in my affected ear to reduce the amount of vibration from both the inside and outside of my eardrum.
One other notable thing that I am trying is to give up my electric toothbrush. When I use it, I can feel a “tickle” in my ear. Could the vibration be causing wear on some part? I have gone back to a regular toothbrush for about three weeks now. No noticeable change at this point.
I have all the severe symptoms. Have had septoplasty, turbinechtomy and the injections through the nose. Patulend was no help. I am waiting for Dr Poe to review my case and I will do any surgery any time to get rid of this. The people on this thread who are talking about no hope are the ones who know the real severity of this. Your milder cases are probably livable. I’m almost non functioning as a person. My job IS exercise. And I work 12-16 hours a day in film production. There’s no lying down time in my workday. Dr Poe is my last resort.
This is a quality of life situation. I am holding on by a thread. This has ruined my life. I wish you all the best.
On October 23rd, I will be going in for the procedure to “fix” my hearing by injecting a substance into the flap at the bottom of the eustachian tube.
I have had PET in my left ear, also a singer / actress. It completely messes up everything is in unbearable and frustrating. I too found tipping my head upside down temporarily cures it. In the end I opted for a grommet being fitted in my affected ear and IT WORKES! Absolutely recommend. Though there is side effects to having grommets fitted I can hear a slight pulsating in my ear with the grommet. When I sleep I sleep in that side to drown out the sound. If u need grommets in both ears u would prob just need abit of cotton wool in ur ears if it bothers u when u sleep. U can’t really hear it in the day. Grommets last around 9 months on average, they fal out on their own after that. I’m on my second grommet I will keep getting them as I find the symptoms come back when it starts to fall out. Hope this helps! Xo
I am so thrilled to have found this little forum that I cried. I have been living with PET for almost a decade (I’m 22 now). For years doctors told me it was related to my sinus problems and I would take so much allergy medicine and get no relief. I also suffer from migraines. I haven’t been diagnosed, but I suspect I may have TMJ as well. I’m in birth control and I ingest caffeine almost daily. It took me years of suffering before I finally self diagnosed myself with PET and went to see an ENT who, in all his 30+ years of experience has seen PET less than 10 times. All of these comments, for the first time, have made me feel not alone! Trying to explain PET to someone without it makes me feel crazy. I don’t even try.
After the visit with the ENT, I got a tube put in my ear. That has helped tremendously but it’s only a temporary fix. I am so ecstatic to try out that YouTube exercise. I’ve book marked this and I will try to report back in a few months. Thank you all so much for being open and honestly.
Two weeks ago I underwent the procedure. I can say that my hearing is not normal at this point. It might not be better, but it does seem a little different. Perhaps a slight improvement. At first both ears seemed very plugged or a feeling of being plugged. My inner sound, when I talk, seemed to be more balanced between the left and right ears. My left ear had the procedure. I do know that my right ear is also somewhat affected. A week later, the plugged feeling has subsided. The sound of my own talking voice seems to be less of a disturbance to me, but I still can’t sing out loud or even very softly without the loudness from my own voice filling my head. There is something about preparing my voice, building a breath, that makes singing force pressure into my ear. At the very best, both ears seemed to be more evenly balanced- which would be an improvement. Hope somebody is listening.
At this point, my ears are pretty much the same as right before I went in for the procedure. No improvement.
Was very interested to read your comment about ibuprofen. My PET started after taking ibuprofen 800 mg x 3 days for a week. ( ie anti inflammatory dose) for my tmd. I was suspicious that it was the drug that caused the ear problem.
Hi Everyone 🙂
I never really post online about anything, but my patulous Eustachian has nearly pushed me over the ledge so I thought I would chime in on my dreadful symptoms and also share with you a recently found “fix” that has worked wonders for me the last couple of weeks.
I self-diagnosed myself about 8 years ago after I started hearing my breathing from the inside out. The first ENT I visited told me that my symptoms were related to allergies. He suggested I use a nasal spray to calm things down which, of course, did nothing. So I went online and read a few articles and blogs and came to the realization that I had PET. I then went to a top ENT surgeon in NYC and he reaffirmed what I had discovered on my own and told me what we all know … that there is not much in the way of a cure. At this point, my symptoms were not too severe so my day-to-day life was hardly affected (in fact they were so mild that simply chugging water killed any and all echoing).
Over the next few years, symptoms would come and go. Never severe enough to consider going back to the ENT to discuss possible surgery. But in April/May about 3 years ago, my symptoms returned full force- worse than ever before. I kept wondering whether it was seasonal allergies that reactivated everything because during the winter months, I didn’t really experience severe symptoms. That being said, however, I think the timing was all just coincidental as spring has come and gone and my symptoms are still ever-so-present. Ugh.
I am thin and have never been overweight. I may have lost 5 or 6 pounds at one point in my life and that is perhaps what triggered all of this. I think what people need to know is that the size of our Eustachian tubes do not just suddenly become larger or more open. We were born like this and at some point in our lives, something triggers the symptoms (a virus for some, weight loss for others, etc.). Otherwise, everyone on earth who lost weight would struggle with PET. But I do think for some of us with PET, losing weight could be one of the initial triggers.
Now that I have lived with PET for some time, I know exactly what activates the horrendous echo that makes me hold my head sideways, sniff all the time (people probably think I have a cocaine problem!), and clench my jaw to try to prevent that dreaded POP. Those things would be: coffee (pop happens literally within 1-2 minutes), exercise (I do a lot of intense cardio … realize this is a GIANT no-no but clearly can’t bench myself on the sofa forever), and stress (always worrying and stressing about something). Chocolate and alcohol also probably contribute, but not as much as coffee, exercise, and stress. Mind you, I also have another extremely rare ear disease called Meniere’s. I was diagnosed at age 14 (now 38) by Dr. Dennis Poe in Boston (probably THE top ENT in the world- he is amazing) and was told that a virus/flu most likely was to blame. Guess it just attacked my poor ear. This has left me partially deaf (38-40 % hearing loss) in my left ear and brings along all sorts of whirling tinnitus when I am exhausted and stressed. I used to get vertigo but haven’t had a spell since 2000! I mean jeez, what are the odds? Two of the most rare ear diseases known to man and are totally unrelated to one another! All of that being said, my problems could definitely be worse 🙂
So, back to PET. My symptoms seemed to go from bad to extreme about 1 month ago when I was flying home from vacation with a nasty cold and very congested head. Two planes and two long descents and I thought I was going to die from the pressure. All was fine and calm after landing until my blocked ears popped 2 days later. Somehow, this made my PET go crazy! It was so bad that I re-started my mad search for Eustachian tube experts. Convinced I was going to need surgery, I called my Dad (a retired physician) in tears and told him how severe things were. He told me to try what others have tried (drops, saline sprays, gaining weight, etc.) and only consider surgery as a VERY last resort. Surgeons will always recommend surgery but there is no going back if you get an unfortunate result!
After that conversation, I decided to give some of these home remedies a serious try and I am SO GLAD I did. A few months ago, my husband introduced me to the “Nasendusche” (translates to “nose shower”). I got mine in Germany (I live here now) but I am sure you could find something the same type of thing in the US.
The nose shower has mended me from a horrendous sinus infection not once but twice and since some doctors recommend a saline spray, I figured, why not try the saline Nasendusche? It has been a godsend. Please try this if you have not already and are at your wits end with this horrendous and upsetting condition (a little different than a Neti Pot: https://www.emser.de/nase/produkte/emser-nasendusche/). I now use it every morning and only get momentary, IF ANY, echoes throughout the day. Of course having coffee and/or exercising totally disrupts the silence, but knowing that I can go almost the entire day without hearing the blaring sounds of my own voice, breathing, and heartbeat from within, is such an amazingly happy relief! I fill the entire container with 1 packet of salt (it comes with packets) and warm water. I squirt half of the salty liquid up one nostril and let it stream out on the other side. Then I do the same thing with the other nostril. It’s a piece of cake and I cannot recommend it enough.
So. While we are all different and what might work for some, might not work for others, I truly believe that this has saved me, at least for the time being, and kept my symptoms at bay.
Sorry for the length of this … once I got going, I couldn’t stop!!!
Just wonder if your ears problems got solved ?
My ENT believes I have the same issue. But unlike most people who suffer from eustachian tube issues, they believe I also have hypersensitivity to sounds. So everything is really loud, so I also have automophy (mostly with my blinking) and hearing a lot of different things at loud volumes is difficult. I am a freshman in highschool and I have had altitude problems since elementary school. It’s hard to focus on a person talking if they are not the loudest sound I hear. My boyfriend and friends are really understanding, my family not so much. They talk like “When you get your ears fixed”, or they don’t understand why u don’t want to do something or go somewhere because its loud. In my friends group one of us is going deaf, one has really bad tinnitus, and then theres me. Recently my automophy, and adaption to altitude change have gotten worse. Cars and any form of travel or extremely loud, which make going back in forth from places difficult.
I have this PET for the past 14 months. I had a 7kg weight loss due to the changing of working nature and this PET come right after that. Initially PET only onset in the afternoon after I had my lunch then it get worse over time even after minutes I woke up in the morning. The autophony I have is not severe but it is quite disturbing in nature as if I have a congested nose.It comes on and off like 5-6 days within a week. ENT specialist have failed to diagnose this, I have to do this online which I have found this page with people having the exact symptoms as mine. I am going to try this https://www.youtube.com/watch?v=NhKyJqERcF8 exercise to see if it works. I have tried various medications from specialist from alkaline nasal douche, nasal decongestant(oral and nasal spray), steroid nasal spray and none of it works for me. Please help me, this is so suffering!!!
My wife is suffering with PET. Please continue to post updates of things that help. This discussion is very useful. Thanks.
Hello,
I know no one has commented in a couple years now, but I have recently found something weird with my PET and was wondering if anyone has noticed anything similar. I live in the Midwest, when I travel to Colorado my head feels so full that it feels like my eyes are going to bulge out of my head. Weird thing is I just got back from a trip to Florida yesterday and the entire week I was down there I had zero problems with my ear (left is my bad one). Not 24 hours back in my hometown in the Midwest, my ears go bad again. The only time mine goes away is when I am laying down to sleep and it seems to be taking longer and longer to get back to normal when I lay down. I have seen a lot of doctors, but I am getting the response that it doesn’t hurt (but it can they just don’t know) so they don’t really care. I have tried multiple drops and sprays, none worked. It has gotten to the point where I have been told there is nothing more they can do and there is no way to treat the symptoms either. So my PC doc has placed me on very low dose anti-anxiety and anti-depression medications so I can concentrate a little better at work and not get caught up in my words so often. My PC basically tells me that I am at my last resort of traveling to Dr. Poe in Boston because he is working on a surgery to fix PET. I can’t afford the travel or cost of surgery since it’s experimental, it’s not covered by insurance at all.
I am 25 years old from INDIA.
This condition is that rare that after March 26, 2017 I am next posting here on October 7th 2019. Literally no one suffered from this in whole 2018..
I just spent my whole day reading all of the above comments, suggestions & everything else.
Just one sentence to ya’ll ‘More power to you people’.
I took this arrow in my ass few months back. I started doing a pranayam to cope my anxiety in which we have to breath as deeper as faster as we can & bang I didn’t even know that there is a muscle name Eustachian Tube which is connecting oour middle ear with our nose.
When we breath faster our eustachian tube opens and closes faster than normal which caused hyper inflammation in my Eustachian tube.
My right sinus is way more open than my left sinus therefore my right eustachian tube is more inflamed than my left one.
Symptoms:- Eustachian tube doesn’t get opened but there is a freaking discomfort in my Eustachian tubes which ENT specialists doesn’t understand because all my tests are normal.
I don’t know why but my eustachian tubes don’t like dry air. Whenever I get exposed to dry air (A.C) my symptoms get worse and my ear gets heavier alongwith sides of my head. In short I have allergy with dry air.
If I do exercise symptoms get worse.
Tinnitus which increases with my tiredness and decreases with my relaxation.
Diagnosis:- till Doctor here in India ain’t able to diagnose it but deep inside I know that the efficiency of my Eustachian tubes are not normal or in your language PE, thanks to that pranayam.
Treatments taken:- a lot of nasal decongestants along with nasal sprays with steroids in it for my allergies. Took a lot of anti allergens say Monticope-A etc to suppress my symptoms.
All used to give me short term relief.
How I helped myself:- These doctors are only good at curing acute diseases when it comes to any chronic condition they just suppress symptoms don’t cure the root cause.
Therefore, I had to take the lead and stop paying my hard earned money to these ENTs.
1.) I STARTED TAKING STEAM INHALATIONS WHICH CALMED MY INFLAMED EUSTACHIAN TUBES.
2.) I STARTED PULLING MY EUSTACHIAN TUBES TOWARDS INSIDE TO MAKE THOSE MUSCLES WORK A LITTLE HARDER AND STRONGER THRU DOING A LITTLE EXERCISE IN WHICH I CLOSE MY NOSE WITH MY HAND AND PULL MY EARS INSIDE WHICH CLOSES MY EUSTACHIAN TUBES.
3.) I DO A LOT & A LOT OF MEDITATION WHICH HELPS ME NOT GETTING INTO IT ALL THE TIMES.
4.) THE ONLY THING THAT TOOK MOST OF MY SYMPTOMS AWAY IS COCONUT OIL. I PUT COCONUT OIL IN MY NOSE 4-5 TIMES A DAY TO LUBRICATE MI NOSE AND EUSTACHIAN TUBES AND DECREASE THE INFLAMMATION INSIDE.
5.) I DO A LITTLE EXERCISE OF MY NECK TO INCREASE THE BLOOD FLOW AROUND MY NECK.
That’s it folks just promise me one thing today that we won’t give up on ourself and will die trying to cure it. I am positive that one day we all shall get cured of it. Have faith in universe. Love yourself live happily.
I love you all. We all are together.
Is there any one else who has tried the method proposed in the video?
And @Shary: Did you find complete relief by using the method proposed in the video?
The following methods help me to prevent the problem:
– permanent usage of cotton earplugs (self-made by compressing normal cosmetic cotton wool)
– additional usage of a beany/headband during night
– usage of beany/headband alone if earplugs can not be worn, e.g. during a conversation
– usage of silicone earplugs during a swim
– stay warm all the time, e.g. wear thick jacket, use a thick duvet
I even moved from Europe into a tropical climate which has helped also because temperatures are more constant. However, the heavy usage of airconditioning completely wrecks the benefits of this.
I have this too and the only thing I have found to help is Cranial Sacral therapy.
I have had this problem most of my life (40+ years.) Because of patulous ETs, I’ve blown out both of my eardrums on two occasions while flying (upon descent/landing.) I have a raspy voice and must open my mouth and “crack my ears” while closing car windows or my head and ears feel too much pressure. Needless to say, it’s a constant battle. I can only fly or drive to other altitudes after taking Claritin D (used to take Tavist D before it went off the market) at least eight hours before traveling and also use Afrin an hour before, during and after. In the mid-2000s, my ENT in San Diego said he normally only sees this condition in pregnant women or dead people; I was neither at the time. He had the whole staff come to look at my open Eustachian tubes as if I were some fossil or circus sideshow. What fun! Not. I’m constantly opening my mouth to, what I termed as “cracking my ears” and boy, it’s a nuisance. I don’t need above allergy medications for anything other than altitude changes and am abnormally dry, as far as the sinuses go. My career path and hobbies, you can bet, will not include scuba or free diving, that’s for certain. As for flying and/or travel, it’s a real shame that I must take the above regimen in advance, which doesn’t allow for spontaneity, but I don’t see any other way around this chronic problem.
Recently I woke up with night sweats and am very careful about water entering my ear canal. To my discomfort however, I tilted my head too quickly and sweat ran into my ear. The dry wax deep inside immediately soaked up and swelled from the sweat and every attempt to unclog my ear on my own was futile; nothing worked. I was stubborn, but ended up at urgent care after two days of having enough, where they promptly removed the expanded wax and there was immense relief. I should have gone to urgent care straightaway when I felt the discomfort and loud, watery echo in my ears upon blunt tapping on the top of my head.
Good luck to you all. Hope my experiences help someone out there!
I have had PET on and off for decades. Tried all the natural cures I could find online (which strangely I can not find anymore ((google algorithms?)).
A couple years ago read about a sinus congestion cure that I tried for my PET: pint of warm water, 1tsp of borax, and 1/2 teaspoon of salt (helps to start with a little boiling water to get the borax to dissolve). Then half in each nostril with a neti pot.
Worked for me. Sometimes will go weeks without symptoms and if it comes back I just do above mentioned and it is gone.
Borax is an old home remedy that is recently getting bad PR and being banned in UK and cautioned elsewhere (probably because it competes with some pharmaceutical ((call me cynical)). Disclaimer: this is not medical advice, it just worked great for me
I just purchased a Zok used it for two days so far and my symptoms have really gone down my ear popping has been way less my Autophony hasn’t been as loud and I don’t feel that my Eustachian tube is as open as often I also noticed I had to sniff less while I was working out which would usually make my ear pop like crazy this is such an easy and simple tool and small so you can pack it in your purse or even a clutch! I highly recommend for everyone to check it out. I am two days in and so far it’s great. I may add that I have had this problem since I can remember and I am now 28 so for results to happen this fast after possibly being born with this is just life changing to me. People started thinking I do cocaine because everytime my ear pops I need to sniff in to stop the autophony so I hope this tool is the answer for me! I also just started acupuncture to help my sinuses drain since this doesn’t allow me to.
Hi fellow suffers,
I was diagnosed with PET last year in 2020, I’ve had it for 8 years now. I’m a 23 year old female. Same symptoms as all of you. The only relief I find is sharp sniffling, but it’s temporary and not reliable. My ENT is pushing tubes, I’m still weary, I cannot deal with it potentially being worse. I was just weeping reading all of our comments of solidarity. No one gets how crazy and annoying and desperate PET makes you feel. Anyone have any new ways they’re finding help? Trying the exercises shared above next ♥️