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Old 10-29-2007, 08:38 PM   #16
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Re: PET Patulous eustachian tube - Started new therapy it's working

Quote:
Originally Posted by petear View Post
Hi Folks

Hopefully I am bringing some good news here on the PET front!!!

I have been trying many treatments with my Natropath and we have been led to antifungal treatments.

The reason this happened is that I read a message from a PET sufferer on a different healthboard and a natropath Dr answered and said have you considered a fungal problem... This got me thinking as my PET started when I moved to a tropical place, also that my PET is better in winter and in dry conditions and fungus is dormant in those conditions.. another thing was that my ear feels very itchy when my PET is worse, I also have candida problems..

I don't however have any pain in my ears which you would expect with a fungal problem, anyway we thought what the hell lets try it, she has put me on a couple of antifungal tablets (natural) and antifungal ear drops, let me know if you want to know the ingredients.

Well it's only been a few days and my ear has improved heaps, today I have had no problems at all, and yesterday it was pretty good, at first my ear itched worse than ever and has some pain but that could be a healing crises..

Anyway I could be counting my chickens too soon and it's just a coincedence but I will keep you posted on the progress... It is possible that for me a fungal problem is contributing to the PET but that may not be the case for you, but who knows it's worth a try..

Good luck to us all
That is wonderful news! I have been suffering with PET on and off for about a year now. It is the most frustrating, irritating and socially debilitating problem. I am a 37 year old pregnant mom (due in jan 2008) and I already have 2 1/2 year old boy/girl twins. It is hard to be a good mom and function normally throughout the day when you feel so uncomfortable with this hearing problem. I hear my own voice at distracting and deafening levels in both ears from time to time...but mainly my right ear. It all started after I had a severe ear infection in my right ear and than fluid in my middle ear. I had my ear drained and I went on Prednisone. It eventually "went away" for 6 months. In early August (16 weeks pregnant), I developed severe sinus congestion where I would blow my nose so hard to get the gunk out. That started teh popping and crackling...etc. Then my voice "popped back in my head" as loud as ever and lasted for 2 1/2 months. Just when it went away for one week (after visiting a holistic Chiropractor), I developed a severe sinus infection AGAIN!!! Both ears completely clogged up and this lasted for two plus weeks. As soon as the congestion started clearing, the "LOUDNESS" returned. The ONLY relief I get is when I lay on my side or put my head between my legs of sniffle in really hard to clog my tubes for a minute...until I swallow. This has been a HORRIBLE problem to deal with. I love to sing...used to sing professionally. That is no longer an option. Does anyone have any answers for me or natural remedies?? I hope we all find a "cure" for this debilitating problem.

 
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Old 11-26-2007, 09:10 AM   #17
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Re: PET Patulous eustachian tube - Started new therapy it's working

Hi BabyTimes,

No definitive answers here, but I think Petear may have been on to something with the whole fungus idea...based on the theory that my acid reflux (LPR) resulting from fungus or some other bacteria in the system, I'm trying to eat a simpler, more natural diet that's gluten-free with a lot more stuff cut out.

Sorry if this isn't making sense...I'm trying to follow the SCD diet, which was designed for intestinal problems based on the idea of starving the bad bacteria in our system...thinking that acid reflux might stem from the same problem, and even mask itself as sinus problems, this diet could possibly work.

I'm jumping around, but my sinus problems are actually caused by acid reflux, and maybe some other factors too. And my PET usually only acts up when my sinuses are acting up too, in particlar in moldy, humid environments. Also, a bunch of people w/ PET also have LPR (this type of acid reflux).

Anyways, I feel for you because one of my goals has been to get this under control before I get pregnant. I can imagine what a pain it must be to have while you're pregnant or with small children around. It's hard enough dealing with when you're just trying to take care of yourself.

 
Old 11-26-2007, 05:18 PM   #18
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Re: PET Patulous eustachian tube - Started new therapy it's working

Hi
This LPR can you tell you have it?
I too suffer from Sinus problems, I also get digestive problems from too much gluten, but I always find that if I eat very healthy no gluten etc, my pet gets worse and if I eat disgusting food loads of fat etc it gets better, I always assume that the healthy eating has an anti inflammatory effect which is great for the rest of the body, not the ear and vise versa.

Any thoughts?

I also feel that I caused my ear problem from overuse of nasal spray and sinus medication.

Also an update: I had to cancel my ENT appointment, I unfortunately had to attend a funeral at the same time, I rebooked for March but I am on top of the cancellation list so hopefully will get in sooner, ear has been playing up the last couple of days quite badly (weather is getting dryer and hotter)..

Also re baby: I have heard many times that pregnancy makes pet worse because the pregnancy hormones soften tissue and cartlidge in the body to prepare it for birth, also many pregnant women get pet, then it returns to normal after birth (for most).. I am trying for a baby too at 37 and I assume that the ear will get worse..."even though one ENT told me I should get pregnant"...???????

 
Old 11-26-2007, 05:41 PM   #19
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Re: PET Patulous eustachian tube - Started new therapy it's working

Wow

I just looked up LPR, I have loads of the symptoms like clearing your throat all the time etc.. and the avoid these foods list are the foods that I often think make my PET worse like raw onion and tomatoes, I have also just recently started drinking heaps of OJ and have noticed an increase in PET symptoms and I wondered in the back of my mind if it was a cause...

Did you see an ENT or who about this?????

I will start to avoid those foods right away and let you know the outcome..

Nicky xx

 
Old 11-27-2007, 10:11 AM   #20
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Re: PET Patulous eustachian tube - Started new therapy it's working

Nicky,

I have the throat clearing too, but mostly in the more humid weather, and after eating certain foods. I think sugar is a bad one, along with dairy and the carbs that turn into sugar. Onions and tomatos don't seem to bother me though. I'm not sure about the oj, since I drink lots of water to clear everything out...and actually, I started drinking the water because other fluids were giving me PET.

Dr. Poe was the one who first diagnosed me with LPR, and then a local ENT did too. You just have to find an ENT who is familiar with it, but the treatment is similar to the treatment for GERD.

That is interesting that eating fat helps you, but I guess that makes sense, since having fat in the eustachian tube helps relieve the PET symptoms.

The theory behind the healthy eating is that the LPR is what's causing my PET, so if I can get the LPR under control, then my PET should be better.

 
Old 03-05-2008, 02:41 PM   #21
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Re: PET Patulous eustachian tube - Started new therapy it's working

My name is Michael P and I also have PET. I believe I may have had this condition since Jr. High school yet did not realize I had a condition then since it started when I was very young and assumed I was no different than anyone else until college. I wonder if it may have been caused by use of tetracycline for acne when I was young. Please let me know if you have PET and have used tetracycline when you were a youth. My condition would be considered borderline (I know there is a better medical term) because it is very dependant on my weight. If my weight falls below 180 my tubes start to open and I need to head for the greasiest hamburger place I can find, fast. I find the science to this condition fascinating. If my weight climbs to 195 and I miss a couple meals, the body seems to begin to feed itself on the fat surrounding the eustachian tubes FIRST and will cause the condition. Fasting for my religion becomes more of a sacrifice than for most and intolerable. I guess I will need to see Dr. Poe since I have recently been getting borderline high blood pressure readings so the eating fat therapy does not sound sustainable. I can tell you what to avoid, caffeine, sugar, running excessively and rapid weight loss. If you need a quick but temporary fix you can use a saline sinus cleanse from the drug store. I am also interested in a long term solution. It sounds like Dr. Poe has a procedure that undoes the defect in the eustachian tube where the opening is too large by creating a pocket and filling it with some material. I am a web developer and if I get some help I plan to post what I discover on a web site to help other sufferers of this condition get educated and to find a good doctor and get the treatment they need. I feel sorry for the patient that has this condition permanently and would hope they see Dr. Poe as soon as possible. I read somewhere that Dr. Poe is training other Drs in his procedure so he is not the only one doing them. Good luck and God Bless. Remember there is always a reason for our trials, it just might take some time to realize what that purpose might be. It certainly adds humility and thankfulness for what we do have going for us.

 
Old 03-09-2008, 08:59 PM   #22
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Re: PET Patulous eustachian tube - Started new therapy it's working

I am commenting after reading a post on another thread. I made a commitment to myself: If this worked, I would try to reinforce this theory and try to get the word out to people suffering with PET issues.

I have been suffering with the symptoms that you describe for approximately 2 years. I stumbled across a post on a different web site that drew a correlation to PET and a probable sleep disorder. The post also correlated TMJ/Bruxing (Teeth grinding) and Acid reflux as common symptoms that commonly pop up with PET. I know this sounds strange but the logic that followed made a huge amount of sense. I will try to lay it out for you and to let you know that I had all of them. PET is only a final symptom of a journey of unintended consequences that got me to this point.

The logic goes something like this:

1.) Poor sleep (failure to transition through Stage 2 sleep to REM) can cause many health problems … in this case PET (Patulous Eustachian Tubes).

2.) Bad habits develop...Stage 2 sleep is where all of the bad habits develop. Most/All (as I understand) teeth grinding/teeth clenching/saliva swallowing/snoring/tossing & turning happens in stage 2 sleep. I did not even think I had a sleeping disorder... I seemed to fall asleep easily, but awoke easily. Note: If you stay in stage 2 sleep all nite, you have a sleep disorder.

3.) Bad habits lead to more bad habits: The teeth grinding causes excess saliva leading to Acid Reflux on an empty stomach. If your like me, you are probably on Prevacid or another PPI med ... getting off this will be another challenge.

4.) Unintended Consequences....The teeth grinding/clenching over conditions the jaw muscles which pinch the eustachian tubes. Installing/purchasing a nite guard only encourages more biting and saliva generation... something like a dog with a stick in it's mouth.

5.) The feedback loop starts ... The grinding and the Acid reflux keeps the poor paitent in Stage 2 sleep all nite.... and the problem gets worse .. if it is only in one ear, the symptoms will eventually spread into the other ear. My ears would also pop in an out during the day when under stress (clenching my jaw)

6.) The cure ... Quit grinding your teeth / shed the nite guard and get through stage 2 sleep as quickly as possible. Essentially let the jaw muscles, built up over the past 10 years chewing on my nite guard, atrophy.

I left the nite guard on the bed stand and began taking herbal supplement 5-htp which was recommended on another thread (designed to boost serotonin levels: I could just have low serotonin). It has been two weeks ... still can tell i’m grinding some, but the symptoms are beginning to fade.

Note: I am not a doctor and I am sure there are many holes in the logic, but it appears to be working. I went to many doctors (ENTs) and they all looked at me and told me there was really nothing they could do. I was convinced I would have to learn how to cope with this (PET) or go insane. Hopefully, I will not have to do either. It probably would not hurt any of us to go to a sleep clinic and validate some of this.

Good Luck, I think there is hope.
Jeff

Last edited by moderator2; 03-10-2008 at 06:20 AM. Reason: posted commercial website

 
Old 03-11-2008, 11:15 PM   #23
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petear HB User
Re: PET Patulous eustachian tube - Started new therapy it's working

UPDATE: Went to see new Dr in Perth Australia



Dr Atlas was brilliant, he totally understood me and said how ridiculous it was to suggest me putting on weight, my problem is clearly not sudden weight lose due to the fact that weight gain makes no difference, anyway he asked how it affected my life and I burst into tears poor man, I guess that answered his question, he mentioned Dr Poe in the US before I has a chance to and suggested laser surgery on the ET tube which will be done through my nose, so no cutting!!! and depending on how bad the ET tube is he may inject some fat, he says this is what Dr Poe has documented and is sending me a paper written by Dr Poe on the procedure, the risks are that my ear may be over corrected and I have a blocked ET tube but I am willing to take that risk.. He has done this procedure for others too which is good.. He sent me for a CT scan too when I mentioned that my Mum and Granddad had ear problems in their left ear too, but he thinks my results will come back fine, he seems to think it's something I was born with and it has progressed over time..



He was so lovely and took heaps of time with me, such a different experience from the other ET doctors I have seen, it pays to wait and pay the big bucks for sure...



So next step is they get my CT results and then ring me with surgery dates, hopefully not too long a wait ( I will have to put the babies off a bit )..



Also they did a hearing test before I went in and it was normal, my left ear being better than my right!!!!



Thanks for all your support through this I hope it works out I will keep you posted.



Love Nik xxx

 
Old 04-09-2008, 07:28 AM   #24
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Re: PET Patulous eustachian tube - Started new therapy it's working

Petear, thanks for posting updates, and please continue! At this point I am working on controlling the diet (trying out the Specific Carbohydrate Diet for the LPR acid reflux), and the true test will be this summer when the DC humidity hits again. I would like to move to a cooler/drier climate, since that seems to help. May also start thinking about the surgery option again, though I'd love to be able to control this at the root of the problem if possible.

 
Old 04-09-2008, 06:08 PM   #25
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Re: PET Patulous eustachian tube - Started new therapy it's working

The CT scan was clear

My surgery dates are April 28th

So he is cauterising the ET tube and maybe injecting fat if needed and inserting a grommit.

I will keep you updated

 
Old 04-10-2008, 05:52 AM   #26
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Re: PET Patulous eustachian tube - Started new therapy it's working

that's pretty soon good luck!

 
Old 04-17-2008, 07:44 PM   #27
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Re: PET Patulous eustachian tube - Started new therapy it's working

update::: I just found out I will be also be having an alloderm graft in my et tube, look it up it sounds great.. Surgery a week on Monday will hopefully be home tuesday and I will write a message then for you all...

 
Old 04-23-2008, 04:12 AM   #28
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Re: PET Patulous eustachian tube - Started new therapy it's working

Hi PET Ear.. I hope your surgery went great. Just wanted to know if Dr.Atlas injected fat through the nose or through the mouth? Its surprising how this can be done through the nose.
I am sure you'll tell us all about your surgery anyway but just wanted to ask you this questions anyway!!
-KSM

 
Old 04-23-2008, 03:37 PM   #29
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Re: PET Patulous eustachian tube - Started new therapy it's working

I have just come across this message board and I'm so happy to know there are other people out there like me! I also have PET and I've never met anyone else who does. No one seems to understand what we go through every minute of every day, so it's been so nice to read your messages and know how you feel, and to know that you know how I feel. I've had it now for several years. I really don't know when it started, but I was diagnosed with Meniere's disease maybe 10 years ago. The Meniere's isn't bad. I have an episode maybe once or twice every 6 months or more. Somewhere between then and a couple of years ago, the PET started. It's mostly in my left ear, but my right ear seems to try to keep up with my left. I have a lot of popping and I sometimes hear fantom sounds. Symptoms are relieved when I have a cold or if I'm sleeping. Usually lying down and sort of scrunching up my neck puts pressure on the E tubes and helps a ton. Unfortunately, you can't really live much of a life by sleeping or lying down! If my tubes are open everything is airy, I can hear myself breathing, and my voice is loud in my head. Sometimes it sounds like I'm actually breathing through my ears instead of my nose or mouth. Lots of times I can hear my pulse in my head. Plugging my nose and sniffing closes the tubes and brings wonderful relief until I swallow, yawn, talk, or inhale again. It's extremely annoying and debilitating.
I talked with an ENT here in Utah who put me on Iodine drops (SSKI) and a nasal spray that had estrogen in it, I think. They didn't help at all. He said the next step would be injecting gel into the E tubes. The gel would last for about 3 months. He said that if the gel injections worked, they could try injecting gelfoam that would last longer, a year maybe. If that didn't work the next step would be surgery where they close the E tube permanently. This would require tubes inserted which fall out after a year, and having the tubes put in again every year.
I'm extremely curious to know if surgury works. I'm not to the point where I feel like my life is over, but lately I see myself going down that road. It's getting harder and harder to put myself in social situations because the noise level is always so high and the popping in my head is so bothersome. Sometimes it's all I can think about and I'm forced to stay at home where it's quiet. I do find relief whenever I am able to focus on other things...it takes my mind off of it and it's like it's not a problem for a little while. But when I'm thinking "Do I go spend time with friends or stay home because my ears are driving me crazy?" that's not a decision people should have to make. I'm sure you all understand! Keep up your posts and I'm very interested in sharing tips and experiences. Thank you so much for letting me know you all are out there!

 
Old 04-23-2008, 06:13 PM   #30
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Re: PET Patulous eustachian tube - Started new therapy it's working

Hi Guys

I haven't had the surgery yet I go on Monday so I will keep you updated..

I'm really glad I'm getting the alloderm graft rather than fat, as fat would eventually be absorbed by the body, alloderm is like skin and will grow and become part of my ET tube, hopefully closing it up a bit.. Ask your doctors about it???

 
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