Patulous Eustachian Tube

RE: Patulous Eustachian Tube

Hi does this cause any symptoms? if so what are they please?

RE: Patulous Eustachian Tube

After seeing one Dr. who told me just to stay away from loud noises, I went to a Ear Nose & Throat DR., he disgnosed as PET (patulous eustachan tube) he inserted a small tube in my ear, and I was relieved at first, but a mere day later, the noises were back. At first (the last 2 years) I would only hear the extra noises when I was in a noisey situation (bars, restaurants) I would get a static noise when the noise hit a certain decibal. About a week ago, I was fighting a sinus problem, with some allergiy issues. I started taking some meds, and the noises and "heartbeat" sound has increased alot, typing on the keyboard right now bothers me. I tried putting my head between my legs when sitting at my desk, does work...but you can't really work with your head bent over between your legs. I have done some online research, and b/c this is rare, I do not find much. There is an herbal drink I am going to order called "Jia Wei Gui Pi Tang" It has said to relieve symtoms 100%. Another thing I looked into was called "Patul-end" they are ear drops, a little expensive, but at this point I am willing to try anything. The next step is surgery. I cannot work like this. I tried sticking cotton in my ear, which I do when I go to the gym, b/c exercise increases sypmtoms, and it seems to help a little, enough to get through the day I suppose. I have had none of the conditions they say about this, no weight, no pregnancy, nothing...and no not know how this happened. I have not always had it, it was just a random night in a noisey place that I noticed it. I plan on seeing another ENT Dr. next week to see what my options are, I hope the herbal remedy will help...I need treatment ASAP. If anyone has any thoughts or ideas for me, please send them on.
Thanks for listening

RE: Patulous Eustachian Tube

[sm=sandrine.gif]Hi! Dealing w/PET, we are not alone. I also suffer this pesty health condition. Mine sometimes gets so nasty that I suffer vertigos. The last episode was while I was driving on the freeway! This condition is affecting my social, family and professional lifestyle . Sometimes my audition completely shuts down, and cannot hear a thing. Doctors alleges that there is no cure for this condition. That it is allergic, but I have noticed that when theyprescribe antibiotics the auditionclears up, but once I finish the prescription, i feel the suffiness and static noises again.Dr says that this is because thetubes fills with liquid again. Hey, and coldair sometimes canmakes it very unpleaseant.For me during the morning is worstthan during the evening, that is becausewhile we sleep the tubes fill with more liquid and drain it little bylittle during the day and by nite time they are less stuffed than during the morning. I chew a lot of gum to aliviate thesymptoms. I had a sinus op about9 years ago and was PET free for almost 4 years, but it came back again.

Just like you Ihave surffed the internet and there is very little info, but learned that there are many people suffering from this disease. I read your email and really empathize with you. It was just like I wrote it myself. I suffer the same symptoms that you describe.

Just like you I am sick and tired of this whole thing. I am willing to trythe medsthat you mentioned. Have you had them? Do you feel any relief? I will appreciate your input. Good health and take care!

RE: Patulous Eustachian Tube

happy happy joy joy! Well, I ended up NOT going to see my new ENT afterall, one due to the fact my horrible insurance has a $2000 deductible, for anything...I was not ready to shell out the cost of seeing one, and running even more tests. My allergies have really kicked in, as I have recently moved from the south to the midwest. I bought an air purifer...which i concluded caused more issues...and started taking...Claritin, yes Claritin! And low and bold..it has helped with my PET! I am NOT saying this is a cure all, but after taking it for a week, I went to a loud bar, and for the first time in years...no noises in my ear! I went to an outdoor event last week, and no noises either! I don't know if Claritin D is the solution, but even if it is temporary, I am willnig to take it as long as it works. And some relief, even if short lived, it good news. I emailed someone about the drink (also in pill form)I found online, they seemed to not have solid research that is worked, and it was expensive.
Good luck with your search for some relief.

RE: Patulous Eustachian Tube

Hi everyone !! so nice to know I am not the only person with this crazy ear problem. I have had this for over 20 years and have been to every doctor imaginable. I get so tired of hearing " your ear is fine maybe some decongestants will help" this only makes it worse. the Drs think I'm insane!!I finnaly found the diagnosis myself on the internet and went to my ent yesterday and presented the info to him. he said the only thing he can do is put a tube in my ear. I had this done a couple of years ago and it didn't do much. this malfunction is horrible . it drives you nuts!!!! I have to keep clearing my ear by plugging my nose and sucking in the air. sometimes that doesn't even help. anyway I schduled with him to try the tube again. dont know what else to do. Im also gonna try and find the tea. anyone know what a grommet is?? read on the internet that some doctor is inserting these into the tympanic membrane. is this the same as a tube ???

RE: Patulous Eustachian Tube

I am 63 yrs old and had this condition my entire life. I could never go on amusement rides
as a child and it has usually been extremely painful to fly. Nausea can occur any moment
and you have to get used to hearing your pulse in your ear while trying to sleep. The non-drowsey
decongestants help but I get immune to them after a few days, so I only use them in extreme
cases. Every few years I have consultation to keep up with the latest research but it's competing
with a lot more prevalent and serious conditions, so don't expect any breakthroughs anytime
soon. I concur that the stint or tube seems not to be the answer. I had a septal reconstruction
8 yrs ago to no avail. My condition isn't as serious as some - I've managed to adjust. As the British say...
"what cannot be helped, must be endured".

RE: Patulous Eustachian Tube

there are some solutions
[link= http://www.healthboards.com/boards/showthread.php?t=353305 ]http://www.healthboards.com/boards/showthread.php?t=353305[/link]

RE: Patulous Eustachian Tube

dr kujawski genève switzerland
dr eloy mont godinne belgium

RE: Patulous Eustachian Tube

Dr. van Zeben in Netherlands

Patulous Eustachian Tube

dr Poe, Boston
dr Yanez, Mexico

Hey guys, I've just found out I have PET too after about three years of suffering. Not as long as some of you though...!
I'm 23 and from the UK.

I feel quite blue about the whole thing...finally finding out what it is, only to discover there is no cure; such an anticlimax.

Does anyone know where you can buy Jia Wei Gui Pi Tang (online)??
If not, I'm holidaying in Japan & China in July/August so I'll try and get some while I'm there.
Anything that can relieve this and give me some quality of [social] life will be a godsend!

PET just discovered thanks

I got sick of dealing with PET (as I now know it's called - thanks!) so got a logon today and wanted to let you know how I deal with it. I've had it for about 10 years mainly in left ear (which seems to be common), I'm 38.

Here's what I've learned increases the symptoms:
lack of sleep, extreme or strenuous exercise (which I enjoy), stress, public speaking (which I do frequently - again, stress), caffeine - after the buzz wears off, Allegra-D or allergy meds that relieve stuffiness, alcohol - prevents good night's sleep, chronic throat clearing, chronic swallowing, travel overseas which naturally means jetlag and lack of sleep, altitude or barometric pressure changes, sometimes humidity but I think this is related to barometric pressure.

Here's what I've learned helps the symptoms:
Avoidance of all the above, Get good amounts of sleep, take a nap, I can cope with this by sucking in air while popping my ears - I think this compresses air somewhere in the euastation tube to keep it closed (if you do this already you'll know what I mean)

Thanks everyone for finally letting me know what has been happening to me. Mine is cope-able, but any tips would be HUGELY HELPFUL. The biggest impact is to my professional life as it causes me to withdraw when it occurs. Good luck to all, any responses are appreciated:)

Hi everyone with PET,
I have done extensive work on many areas and I think this might be another one for me! If any of you would like to try out something new, then get in touch. You won't have to pay anything, but I will use you as a guinea pig!!!
My work is used to treat vertigo and Meniere's, and I would be really interested to see if I could help PET sufferers too.
Just get in touch
Olivia Roberts

Current Teatments for PET

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Here's what I've learned helps the symptoms:
Avoidance of all the above, Get good amounts of sleep, take a nap, I can cope with this by sucking in air while popping my ears - I think this compresses air somewhere in the euastation tube to keep it closed (if you do this already you'll know what I mean)

Thanks everyone for finally letting me know what has been happening to me. Mine is cope-able, but any tips would be HUGELY HELPFUL. The biggest impact is to my professional life as it causes me to withdraw when it occurs. Good luck to all, any responses are appreciated:)

In my search for an escape from this I've come across several things that apparently many, many people have been trying for years...these are:

-Patul-END nasal drops, meant to cause edema to the Eustachian tube repeatedly, to eventually cause a permanent swelling back to mimicking the original configuration

-Use of Premarin (an Estrogen) together with Potassium Iodide drops (in orange juice to kill the taste) for a 3 month period to try to accomplish the same thing

-Use of a Chinese herb concoction called "Jia-Wei-Gui-Pi-Tang", which was reoirted by Japanese researchers several years ago to have benefit; I've only found one user report that stated some success with this

When it comes to Patulous Eustachian Tube (PET) dysfunction, those who are afflicted are evidently mostly on our own...

Hi yorkere and welcome to Healthypages

Thanks for posting this information but it looks like some information is missing from the following??

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Here's what I've learned helps the symptoms:
Avoidance of all the above,

Best wishes
Moonfairy
x

Mangled Post

Moonfairy:

Sorry about my prior post; I was trying to quote a previous post about this and I messed it up.

Here's what I was trying to provide:

In my search for an escape from this I've come across several things that apparently many, many people have been trying for years...these are:

-Patul-END nasal drops, meant to cause edema to the Eustachian tube repeatedly, to eventually cause a permanent swelling back to mimicking the original configuration

-Use of Premarin (an Estrogen) together with Potassium Iodide drops (in orange juice to kill the taste) for a 3 month period to try to accomplish the same thing

-Use of a Chinese herb concoction called "Jia-Wei-Gui-Pi-Tang", which was reoirted by Japanese researchers several years ago to have benefit; I've only found one user report that stated some success with this

When it comes to Patulous Eustachian Tube (PET) dysfunction, those who are afflicted are evidently mostly on our own...

PET nightmare

HI There
I have had PET for the past 4 years and it is a complete nightmare!! I have tried everythig and nothing seems to help.
I was wondering if you have tried the herbal remedy?? if so how did it go? I live in Ireland so im wondering where I can buy it?
If anyone out there has any solutions they would like to share it would be greatly appreciated.
Thanks

My Use of Jia-Wei-Gui-Pi-Tang

josiePET:

The herbal "tea" is called "Jia-Wei-Gui-Pi-Tang" and is available from Blue Light , Inc. 631 W. Buffalo Street, Ithaca, N.Y. 14850 (607)275-9700. The product is supposed to be the exact formulation as used in the original Japanese research study. I've been taking it just as directed since 8-24-08, 3 times per day. At that rate a bottle lasts 2 weeks.

Two days ago, I noticed that my left ear exhibited almost no symptoms during the day, only a couple or 3 pops. The right ear has begun intermittently popping on me more often. But there've been no occurrences of severe autophony, just mild indications...I've ordered another bottle & I'll go through that one, and then determine whether it has had any benefit...If you try it, please let me know what you think of it.

Robert

New To PET

Hey guys!

I'm new to PET. I've not been officially diagnosed yet, since I'm battling with my insurance company to find an ENT that they will cover. But I'm sure I have it because I have all of the symptoms, and the autophony is constant except for when I lie down or put my head between my knees. It seems like for some of you the autophony only happens at certain times of the day, and sometimes not at all? I've been suffering from these constant symptoms for over 3 weeks now, and I just can't imagine what it would be like to live with it for years and years, without finding a cure.

I'm doing as much research as I can online, and I'm trying to figure out the effectiveness of all these treatments that are mentioned like Patul-END, Jia Wei-Gui-Pi-Tang, etc. Please tell me if you've had success or failure with these remedies. Also, for how long should they be taken, and what type of results are expected for it to be called "successful"?

Also, has anyone had any experience with being on Birth control, then stopping and having relief? Basically I'm trying to pin point causes and see if they are even reversable...once the ET is open, is it permanently that way? By reversing probable cuases can it go back to it's normal state?

Has anyone had success in gaining weight, taking vitamins that oral contraceptives drain from your body?

Please let me know what has worked for you, and the extent of which it worked? What type of relief? For how long? And what did you have to do to arrive there?

Any advice or experience is much appreciated!

what exactly is the Eustachian Tube?

Is it a muscle? Is it cartilage? Is it just some other sort of tissue?

I read somewhere that it had a cartilage skeleton that is possibly softened due to hormonal imbalance during pregnancy which can cause it to sag and you to get PET.

But if it's got a cartilage skeleton, what is the rest of it?

Does is have a valve mechanism attached that opens and closes it, or does muscle movement when you yawn etc just do the job?

The reason I'm asking is I'm trying to take vitamins that are strengthening for the tissues the tube is made of, but I don't know what it's made of?

Any knowledge?

Thanks!

Catheter

Am back to square one with my PET. In April this year I had a catheter inserted and for two months enjoyed a normal ear except for the sound of my pulse always in my ear. By September my ear stopped closing entirely and I had the catheter removed in October. Now my ear is worse than before the initial surgery. After forty years with this it was both miraculous and tragic to have two months of normalcy. Help!

To resolutionmagic

Hi everyone with PET,
I have done extensive work on many areas and I think this might be another one for me! If any of you would like to try out something new, then get in touch. You won't have to pay anything, but I will use you as a guinea pig!!!
My work is used to treat vertigo and Meniere's, and I would be really interested to see if I could help PET sufferers too.
Just get in touch
Olivia Roberts

Hello Olivia,
What kind of therapy do you use?. In think I have PET in a interminent and copable way, but I would like to try a consistent therapy to overcome this in a permanent way. If you have any ideas, let me know how to contact you, my email is
Thanks,

Hi Pazfe1 and welcome to Healthypages,

Unfortunately we don't permit contact details to be posted on the forums, though there is a private messaging facility available to members once they come off their initial period of moderation (once you've been a member for a few days and made some acceptable posts).

Also, please consider that this thread is now a few years old and I don't believe Olivier is still around on the forums to read your post.

All Love and Reiki Hugs

patulous eustacian tube

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