worried about ears...patulous euastation tube

[hawkings]

Hi does anyone have PET (patulous eustation tube)-when they talk, they hear their own voice very strangly and ears feel like their full of pressure. Does anyone know how to deal with this? Can this be cured? although i know i have eustation tube problems and my ears always feel clogged.
Thanks
Hawk

[RonArchitect]

When I was 12 I used the sniffing technique to close up my eustation tubes and stop the echoing.  Then I discovered if I close my nostrils and sniff, it accomplishes the same thing.  Since my nostrils are closed (like I was going to jump into a pool), sniffing is silent - no noise at all and nothing to be socially embarrassed about (as long as I held my nostrils closed in an inconspicuous way).  

[Kay2kyl]

Hey I'm 14 and I may be getting tubes but I can do the same thing as u used to when u were 12 how is it now? And I am getting tubes probably very scared would those not able me to do that or would they not help??

[Kay2kyl]

Hopefully you comment back soon going tomorrow very scared need someone to talk to who has the problem 2

[PEACEBEWITHYOU]

@ronarchitect OH MY GOD, YOUR METHOD WORKS.  ALL I DO IS CLOSE MY NOSTRILS AND SNIFF UP AND IT CLOSES THE TUBE!!!!!!!!!!  OH MY GOD THANK YOU SO MUCH

[PEACEBEWITHYOU]

@ronarchitect OH MY GOD, YOUR METHOD WORKS.  ALL I DO IS CLOSE MY NOSTRILS AND SNIFF UP AND IT CLOSES THE TUBE!!!!!!!!!!  OH MY GOD THANK YOU SO MUCH

[yorkere]

Very glad to hear you've had some success with the PatulEND...it's true that some do report that it does little for them, but many many others report it has great power to conquer PET...

Robert  

[barbs300]

Hi everyone. I don't know if anyone still reads this forum, but I wanted to share a little about PatulEnd drops. I share your burden of having PET. I got PET after having head, neck, and spine radiation and chemotherapy. I know how terrible it is, and I hope you have all found some relief! I want to recommend PatulEnd. I've had PET everyday for the past 2 years. I have a pretty severe case of PET, due to all of the radiation I had. I was very very hesitant to try PatulEnd, since reading that so many people don't see relief from it. However, after surgery to fix my tubes failed, I figured I would give it a try. I started using PatulEnd on Saturday..today is Wednesday and my autophony is pretty much gone. Other than some pretty intense stinging when the PatulEnd reaches the eustachian tubes, I haven't experienced any other side effects. I definitely recommend giving it a try. It has given me my life back, and I truly believe it might give you yours back, too!

[maryratti]

Hey guys.

i just recently experienced PET while participating in my first 28 day fast. i lost 15 lbs in the first 3 weeks and from what i'm reading here, the rapid fat loss is what contributed to the PET showing up. this also tells me it can be fixed. i'm drinking more water now, i find relief when i lay down, it doesnt occur all day, i'm never dizzy, there's no pain - just my own really loud voice in my head sometimes which gets annoying.

my assumption is that when i start gaining weight back that it will get better. thank you for sharing in your experiences. i wasnt sure what was going on. since i am a vocalist, it made the frustration that much more so.

i pray everyone finds wisdom, relief, peace and comfort.

[NOTUBEPLEASE]

what ever happened with your PET? I have had this condition since 2007. It started after a a bad cold. I went to an ENT and a specialist and my records said I "looked the condition up on the internet". The specialist said oh i know a guy who only gets it when he plays tennis.....he said i could put hormone in my nose/ear (those of you who have used the premarin and are male.../woman can you tell me how are the side-effects? please) The premarin is very expensive. Well after many months of acute PET with no treatment the symptoms of AUTOPHONY and a CLOGGED ear seemed to get less and less. I was overjoyed. Eventually, I'd just get it on and off when i got hot and sweaty....i'd lay down and the symptoms went away. I could deal with this. Then just a month ago I got a really bad cold with alot of mucous. I was in a really humid area in florida and a plane ride when i was sick. It's been a month and ive had PET symptoms everyday except for one day since...i'm going crazy. also way too much stress. i have spinal stenosis and have had 2 MRIs and Im waiting to see a neurosurgeon for a consult....Im on the edge with the consult as it is and now with PET it's just  horrible. my sympathy for all those who suffer with anything!!! anyone have spinal issues/Cervical/Lumbar and PET? sorry for the rant...

[yorkere]

Lotus B:

About PatulEND's composition; I was told by Dr. DiBartolomeo that the primary ingredient is Vitamin C...he would not reveal to me the other ingredients....

Robert

[kit789]

Hi

my name is kit. I just turned 50. I was started to go through menapause when this started, dont know if my hormones being out of balance could have started this, The doctors think maybe??but dont know for sure.
I have had some allergies, also.
I went to an ENT doctor and he thinks I have patulous ear, meaning  the eustaian tube in my ear doesnt close. I have had this since january, 2013, it started one night and has never stopped since. I hear my hearbeat pounding in my ear all the time, it is worse at night, becomes very faint during the day, repeats the same cycle over and over.
I t really scared me at first.
I went to a Nuerlogist, and I had a MRA. That looks at blood vessels and arteries in the head. It was normal.
The ENT wants me to get a CT scan,
The ENT wants to make sure I dont have a thin temperal bone, there is a medical term for that

did you have a CT scan?
What test did you get
Is that what you have?patulous ear.
please forgive all the spelling errors, too tired to fix it all

saw this video on utube to try and cure patulous ear, its this exercise you can do to try and close your eustatian tube, Im trying it, has helped a tiny bit , as far as I can tell. I figure its worth a try.

best of luck to everyone that has this.
sending you positive prayers, best of luck with your operation.

Kit

[briley1955]

I was treated for Wegeners with large doses of Predisone resulting in PET.

[mari78499]

I have all the classic symptoms of pet and am ging crazy!  In addition, I also have begun getting a pressure in both ears and some facial discomfort.  The ent told me to see another dr. who treats sinus problems..Can pet create sinus pain?  Do any of you have similar ailments?

[mtur]

Has the operation worked and are you still teaching?  I am a teacher and am diagnosed with PET.  I do not know what to do as it has affected my teaching ability.  I am on sick leave but want to go back.  It has happened when I lost a lot of weight due to an illness.  I am trying to put the weight back on but no change in my condition.  This has affected my life and my family.  I find it hard to converse alot and am alittle depressed.  I should have taken better care of myself.  Please reply.

Thank you,

Pat

[yorkere]

The product is known as PatulEND, and is sold by Otologist Dr. DiBartolomeo of the Ear Foundation in Santa Barbara, CA... 805-563-1111

It sells for ~$50/small bottle, with no need for a prescription.

It does work although it may take over a year to rid you of the condition completely...read the instructions completely!  It's hard to learn how to use it correctly; the fluid must reach the Eustachian tube to sting it shut after properly squirting it into the nostrils.

Robert

[marymac1227]

I am a sufferer of PET and I must say, it is driving me absolutely crazy.  I cannot stand the feeling of air going out of my ear; the autophony (that really gets to me) and just everything about it.  I went to an otolaryngologist three time within 4 mos. and he nor his otolaryngologist brother could diagnose my problem.  I finally started doing what I do best and researched it myself - Sure enough - I am a text-book case of one who has PET -- CONSTANTLY.  The otolaryngoologist doctor told me on my last visit that he couldn't help me b/c he didn't see anything wrong and my hearing was super fine.  He said whatever it is, "you're just going to have to get used to it."  He further went on to say that he has to "pop" his ears all day long - "just ask my girls who work with me, they'll tell you."  I said when you pay me a $15.00 co-pay, then I'll listen to your problems.  I have suffered with this annoyance for more than 4 years now.  I am going to see a chiropractor (he's not just a chiro - he's extraordinary - if anyone can help me or at least send me in the right direction, it would be him.)  I have tried all of the above, absent surgery, and the ONLY relief I get is when I lie down - yes, if I put my head down and let the blood/fluids "run up," I am fine....for about 3 seconds and it's back.  PLEASE, if ANYBODY has any other info to get rid of this "rare but benign" problem, please let me know.  BTW, I lost 30 lbs. within a month (weight I could not afford to lose) when my nephew passed - I put the weight back on, plus some, and still, no relief - that was 5 years ago when I lost the weight - the PET happened well afterwards.

[Gradient]

I've been living with PET in one ear for several years now and thought it was from getting water in my ears when swimming. Being diagnosed was a shock, and the thought of surgery was a big u-uh moment! So I've just been living with it to the best of my ability. Well, long story short, yesterday I noticed that sucking/chewing on a large peppermint lifesaver seemed to make my tube close. I deliberately ate a couple when my ear went off today, and each time it worked! Is it the peppermint oil? I dunno, but I don't care why it works. It just works for me. Just had to share this in case someone else finds the information useful.

[danidef]

I almost cried when I read your entry.  I have the exact same symptoms and have been told by two ENT's that they can't help me.  The second went as far as telling me that after having these symptoms for 4 years it would go away if I put a hot towel on my neck!  I am a medical professional myself and so had thought I would be taken a little more seriously.  I can't take it anymore.  I am constantly bending over to clear my ears only to have them clog again as soon as I swallow.  Have you made any progress?  Is there anything I can do?  

[Merikate]

I am currently on Premarin nasal spray twice a day for about a month (compounded) for the treatment of PET.  Now for about the past week I am waking up at around 2:15 every morning and can't go back to sleep.  I am also having some headaches.  Does anyone know if these are side effects?  It seems to be working except for a few times.  My Dr. said he can take fat from my neck and put it thru my nose to my eustation tube to "fatten" it up, but it may cause hearing loss.  If my insurance will cover it, I am about so desparate I may try it.  What do you think about that and do you think the insomnia and headaches are side effects of the Premarin spray?

[LotusB]

Doing great with the water sniffing.  So far it has worked every single time and lasts a few days.  If anyone else out there is trying this, please let us know your results.  I have experienced no problems at all with this - it feels just like getting water up your nose while swimming.

[mrhotsauce_heavymetal_head570]

Just wondering how you are doing still with the water sniffing. And if you had any problems with it.

[LotusB]

Okay, I've been sniffing water up my right nostril for the last 4 months on and off as required to stop the PET in my right ear.  I sniff about 1 tspn of  water up my right nostril while tilting my head to the right (awkward but it works for me).  When I feel that sting by my right ear, I know I hit the right spot.  Water will run out of your nose and you'll have to blow - so keep a hanky near!  I had PET today again - 92 degrees and very humid; I sniffed up a bit and it was gone and did not come back the rest of the day.  It seems to last a few days, and I don't seem to get it as often as I did.  Not a permanent solution, but the best I've come across yet .... and no more drinking multiple glasses of water for the same goal.  Good Luck to you all.

[cheryl747]

I am so happy to be reading these posts!  I have had this problem for many years, and only "hard sniffing" or putting my head toward the ground helps.  I only looked on the computer today to see if there was anyone else out there after one of my partners at work jokingly asked if I was sniffing cocaine!  I didn't even realize my ear was plugged and that I was sniffing to get rid of it.  I probably do it all the time.  I am now going to try drinking more water.

[THIS_PET_NG]

I forgot this question.  If this becomes so unbearable, is there a way to surgically become deaf in that ear?

[THIS_PET_NG]

I have just self diagnosed myself with this horrible inconvenience.  It has only been less than a week. Seeing the ENT tomorrow.  I started with cracking noises like wax build-up shortly after having my jaw surgery for TMJ 5 years ago.  Sometimes the sounds were like clicking 2 rocks under water very quickly.  While in Florida 2010, I caught a really bad cold.  Lost my voice, congestion really bad.  I was using over the counter stuff and 4-way spray. (used nose spray 14 years) My left ear got blocked which was the first time from a cold.  I had my ears flushed with water to remove wax and still had a blocked ear. Went to see my Doctor who prescribed steriod nose spray and another decongestion. I  was outside in Mass. recently on a warm day and started walking.  That was the first time I heard my voice, breathing, soooo loudly. Comes and goes just like the majority I read here. I'm moving to Florida this June and find that the hot humid air is not good.  Figures. I was also going to learn how to dive.  I'm going to ask ENT tomorrow about the water sniffing.  And I'll check out PatulEnd.  Thanks for having this site.

[LotusB]

So far so good with my water sniffing!  Thanks Robert as if it weren't for your posts about PatulEnd actually giving true relief, I might not have tried anything up the nose!  I researched them after your posts and being too cheap to buy them ;-), tried the water instead and am so happy I did.  In fact, on occasion now if I'm doing something important that day and I don't want to deal with PET, I'll sniff a bit of water to assure I won't get it that day.  It seems to last a few days at a time - but I've only been doing it for the month now (this summer will tell).  I will report back on this later in the year.

For GlarosE - Glad that you didn't give up and found all of us who suffer with you and that you continue to look for solutions!  I saw an ENT in 1996 (he was good and diagnosed it right off and suggested water (drinking) and salt to retain water.  I've ended up water-logged trying to stop the PET - but it did work if I drank enough water for the most part.  I don't think water up the nose is a problem as they sell saline solutions for sinus over the counter, which is water and salt; and the Patul-End drops must be water based too (maybe Yorkere will let us know what the ingredients are if the bottle says - also do they sting?).  I did try the saline drops the same way I sniff up the water, and it too worked immediately - however it stings big time and I would end up with a slight earache (although no PET).  Water only has the initial sting at the ear and goes away quickly.  Since I only sniff up a tiny amount from the palm of my hand I can't imagine it causing a problem as it is water and should readily absorb into the body.  Keep us posted on what your ENT says!

[GlarosE]

Hello everyone,

I'm a fellow sufferer with PET and I live in Cyprus where the climate is warm or hot and humid 8 months in a year. The autophony (right ear) showed up in my childhood, probably after my tonsilectomy when i was 11. I also had wax removed with pressurized water around that time, something that I suspect might have also contributed. For years, the symptoms appeared around springtime, so I thought it was an allergic reaction to the weather change. Then it went away completely until next spring... When i was about 20 I had a hormonal imblalance so the doctor prescribed estrogen pills. At the same time i lost weight (5-6 kilos, which is a lot for me, as I'm quite thin). The combination of the two, along with anxiety must have been what aggravated my PET to the point that it became a permanent condition. I'm 34 and for the past 14 years it's been with me all the time. In the winter I get some good days, but I have learned to anticipate the bad days. I think this is the tragic of this situation. That we somehow get trapped, it becomes a habit and we can't let go. Of course doctors haven't been able to help me. Most of the ENTs I've seen in the past just didn't know anything about it. I felt like some of them were thinking that they were wasting their time with a hypohondriac. I actually convinced myself that I was a hypohondriac and that i was overeacting, until i started going online looking for solutions about a year ago. I found other people with the same problem and realized that this is actually an objectively bothersome condition.

Through my experience i have reached the same conclusions that you have. That stimulants, dehydration, emotional stress, physical exercise (which causes dehydration), pregnancy (therefore hormonal havoc!!) can cause or aggravate this condition. I found that the measures that i have taken have enabled me to manage but not to cure the PET.

I have read some books on Ayurveda. That information has shed some light. I bet we are all thin body types, with a sensitive nervous system and a tendency to be restless. That is a vata (air)type. We need a lot of water and good oil in our diet (olive, sesame, clarified butter).

I found quite a lot of relief by sniffing up sesame oil and letting it settle while lying down (this is an ayurvedic practice). I mentioned this to another group on another site I was writing. One of them asked her doctor and he told her that it might actually be dangerous in the long run, if some of the oil ends up in my lungs. I still do it from time to time, but i got a bit scared.

Which brings me to the water up the nose technique, deviced by Lotus B. Sounds great but what if the same risk is entailed? Are you seeing an ENT Lotus B? Can you ask, perhaps?

I saw an ENT last week. Palestinian who studied in Germany and has connections with an Otorinolaryngology Centre in Germany. He actually knew quite a lot about my condition. He was against the standard proceedures (fat, silicone, tube insertions). He said he performed them in Germany but the patients only had temporary or no results. There is also risk involved... He said he was going to call the centre and try to find what is considered most effective now. He called me last night with news. He said he looked into alternative solutions, because he didn't find any of the surgical solutions to be effective. He said that what he found that actually works (many patients have had good results) is a type of physiotherapy for the ET. I told him I had read about it (someone had mentioned it on another site). First the patient has to check whether the ET has atrophied and then there are are therapy sessions where the patient learns how to train the ET to function properly. Unfortunately it is not offered in Cyprus, but he said he will gather more information when he travels to a conference on the 23rd of March and he will call me again.

As soon as I have more information i will let you know.
Unfortunately i cound sound very motivational at the moment. It's springtime... but i know you... of all people, can at least understand.

Thanx.

[yorkere]

Congratulations on your discovery!  I hope this keeps up for you...I've been using the PatulEND for about 2 years now, and the autophony has not presented for months now; the pops & snaps still occur but the PatulEND keeps it away from 2 to 6 days or so now...

Robert