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Old 08-20-2008, 08:17 AM   #1
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For all Patulous Eustacian Tube Sufferers

Hi. I'm an 18 year old female who has had Patulous Eustacian tube dysfunction for about 2 months now. I thought it would be a great idea for wll those suffering to comment on methods of dealing with this. We can all come together to share what we have discovered to relieve this harmless but annoying problem.
A little history of my problem:
I have a history of horrible panic/anxiety. I tend to be VERY hypersensitive--i notice every little thing that goes on in my body. I have seasonal allergies. I am thin (5'6. 115 ibs). and was on oral contraceptives (yaz) for 6 months. My problem began after I started going to college (i was REALLLY nervous, and didn't want to go) leading me to believe that this problem could be linked with anxiety.
I noticed fullness/clogged feeling in ear so I went to infirmary. I was prescribed flonase and decongenstants as well as allergy meds. This did not help at all. in fact it made things alittle worse. i finally went to an ENT back at home--she is one of the top ENTs in the state. anyway, she confirmed that it was not standard ETD because my ears were
popping just fine. it was patulous. she reasurred me that it was not a life-threatening problem, but it could be aggravating. she also said it depends on your ability to cope and distract yourself. she said that leading causes were weight loss (even as little as 5 pounds), stress and dehydration. my method of dealing with this right now is drinking lots of water, daily vitamin and eating lots of carbs--i'm trying to gain some weight. when i exercise, i don't do anything to rigorous (when i went to college, i was running A LOT). 3 times a day i am laying on my back on a yoga mat with my legs propped up on a chair. i am drinking chamomile decaf tea in the morning and at night. my most aggrivating symptoms is crackling and crunching in my ears..but i must remind myself that it is simply caused from the Eustacian tubes rubbing against eachother..harmless just loud and annoying. i noticed my symptoms are worse in the morning. i have to keep myself busy..
but please, anyone with this, i'm starting this board not one to complain on but to find SOLUTIONS.

so i'll be waiting to hear from everyone

 
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Old 08-21-2008, 07:14 AM   #2
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Re: For all Patulous Eustacian Tube Sufferers

good to hear from you!

a few questions: what are your symptoms?
how did this start for you?
has it gotten worse over time? (maybe you shouldn't answer that question lol)
do you find that when you relaxed, it helps?

I'm trying to connect the dots here...

I've been trying to bulk up and gain about 10 pounds. I find that the clicking subsides temporarly when i pour a sinus-solution product called SINUCLEANSE though my nostrils. Also, chewing bubblegum (preferably something REALLY big like Bubbleicious or something).

yes this BS is really friggin annoying...but i am going to try to manage it until something better comes a long. Do you get autophony? my head always feels like it weighs 100 pounds..this has really messed with me, i am taking a semester off from college because of it..but i find that stress makes it much more noticable, in the sense that when we are vulnerable everything bothers us 10-fold.

but, again..describe your history/symptoms, etc.

SOLUTIONS, people!
lol

 
Old 08-21-2008, 06:34 PM   #3
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Re: For all Patulous Eustacian Tube Sufferers

so let me get this straight....you are NOT taking any nasal sprays or anything of the sorts? or decongestants..because you know that will make it worse..
my ENT (who is the best in the state) told me to put on some weight, and stop any allergy meds, oral steroids, decongestants or anything. i think this has helped somewhat.
SINUCLEANSE helps for like 10 minutes, i'm not going to lie. it's a neti poti--you can search for it on the web. it's a little teapot looking thing where you put water and saline mix in and pour it through your nose.

so..what were you doing that made this worse? because without question the nasal sprays, etc would have made it worse...but probably would get better after you'd discontinue the usage...but apparently it takes some time..a few weeks/months.

like you, the docs first treated me for standard ETD blockage....do you ever get dizzy or lightheaded?

do you get crackling in your ears? i guess that's just the eustachian tubes touching.
how did yours just happen "out of the blue". were you doing anything out of the ordinary?
i was on birth control, i was running A LOT, and pretty thin.
but it might be getting a bit better. i'm replacing running with light swimming.

i'm sure there are people out there perfectly content with their lives despite PET. I just hope that this PET doesn't spiral into autophony. when did you autophony start happening?
i'm too young for this bullsh*t, but there has gotta be solutions/coping mechs.

Last edited by nlaurensays; 08-21-2008 at 06:35 PM.

 
Old 08-27-2008, 05:53 PM   #4
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someonecares HB User
Re: For all Patulous Eustacian Tube Sufferers

I have heard that drops of a solution of a small amount of cayenne pepper and distilled water in the nostril closest to the affected ear will cause the eustachian tube to create mucous which is necessary for it to close or at least give some temporary relief. Decongestants and anti-histamines do not work on a patulous eustachian tube because they dry the necessary sticky fluid.

 
Old 08-27-2008, 09:44 PM   #5
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Re: For all Patulous Eustacian Tube Sufferers

I was diagnosed with a PET at House Clinic in LA. They prescribed the premarin nasal solution which did help me in different ways. I no longer use the drops. My situation is somewhat complicated because I also battle depression and anxiety. I did not have the problem you describe administering the premarin drops. As a matter of fact sometimes I could taste it in my throat from going through the tube. Anyway, everyone is different. Best of luck to you.

 
Old 08-28-2008, 09:29 AM   #6
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Re: For all Patulous Eustacian Tube Sufferers

i also battle anxiety and depression but i find that staying busy is great. i went to the ent yesterday again and he says i'm too healthy to be seeing him ha. do you get autophony? mine seems to be getting better because i'm less stressed. you cna't worry about PET too much. if you are an anxious/deprssed person like me, you tend to let everything bother you. you just have to take it all for what its worse. it can be annoying, but not life threatening. stop trying to fight it so much is my best advice and i swear you'll notice improvement. eat a lot and drink a lot of water and get busy..eustachian troubles are common but you can't focus on it. are you a woman taking birth control pills? if so, get off of it. drink A LOT of water and get plently of rest. just get your life the way you want it, and then everything else follows your.your PET will probably a-start fading away or b-it won't bother you anymore. i promise.
how long have you had it¿ when did it start? how?

 
Old 08-28-2008, 10:01 AM   #7
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Re: For all Patulous Eustacian Tube Sufferers

If autophony is the only thing bothering you, may be you should see your ENT and discuss TRT or HRT - this is Tinnitus Retraining Therapy or Hyperacusis Retraining Therapy - it is 70% - 80% successful in reducing tinnitus and hyperacusis - some ENTs are trying the same model of TRT or HRT on patients with autophony - I don't know how helpful this may be - but it is certainly worth a try! As of yet, there is no published data on this therapy for autphony.

TRT or HRT is very labour intensive - for this kind of therapy to work - you need to wear the masking devices for at least 4-6 hours EVERYDAY.

J

 
Old 08-28-2008, 02:32 PM   #8
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Re: For all Patulous Eustacian Tube Sufferers

I was diagnosed in July of 1999 by Dr. Jennifer Dereberry. They did a hearing test on me which read I had excellent hearing (had had this done twice before with same results) She asked me if my voice sounded like I was under water when I spoke. This was true. My symptom was more of a muffling in my right ear, and, although the test showed I had perfect hearing, I did have trouble hearing out of that ear. The paradox, however, was that sound caused horrible physical pain. It is important to remember that I was already dealing with debilitating clinical anxiety and depression that is inherent in my family. I was already taking medication for these, but the meds were not helping me. It took me a long time to find the ones I could at least tolerate without going out of my mind. I had to continue taking them because I would never have slept otherwise. I was also on meclazine at the time for dizziness. I administered the premarin solution by tilting my head back and placing three drops in my right nostril. No, potassium iodide was not also prescribed. I did not have to insert the dropper far into the nasal cavity at all. It was the medicine I could taste in my throat. The purpose of the premarin was to swell the tissue in the ET. It did take a week or so before I saw improvement. As I recall, I was able to discontinue the meclazine as improvement progressed, and my medication started working better for me, but I was not 100%. I still had dizziness, brain fog, severe fatigue, and chronic pain, but it was better than where I had been. I think I was on the premarin for about 2-3 years. At this point I want to stress that my situation is unique to me. I am not a doctor, and I am not giving advice to anyone. I am simply telling my story. The journey from that place has been long and arduous. My heart goes out to anyone suffering from any illness at all. Personally, I think PET can be caused by different reasons in different people and that there are varying degrees of it. I have researched TMJ adjustments, the problems that clinical anxiety, which requires medication, because the brain is not sending the message to, perhaps a nerve, can create, hormonal therapy, nutritional therapy....and although my days are sometimes a stuggle, at least I can function now. I agree. Drink lots of water, especially if you take dehydrating meds. I have to be very careful about that.

 
Old 08-28-2008, 05:53 PM   #9
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Re: For all Patulous Eustacian Tube Sufferers

Robert....I don't have anything new to describe....no battery of tests......Have you ever researched TMJ adjustments? When the TMJ is out of alignment it can create all sorts of problems. One of the researches I did was find someone who taught me how to GENTLY adjust my own TMJ. This became part of the solution for me......it was when the brain fog lifted.....I wish I had known about it sooner. I told you my situation is complicated, and does not necessarily apply to other individuals. I am not suggesting anyone do this. I am again just sharing part of what helped me.
I am going to say something here that may sound a bit controversial, but it is just my opinion. In my situation, I believe the patulous eustachian tube was a symptom of my not having my anxiety and depression dealt with medically with medication. I tried everything to stay off of meds. Eventually I had to face the fact that some people, not all, need chemicals to help the electrical impulses in their brains' function as best they can. I believe perhaps a nerve controlling the eustachian tube was not receiving the message from my brain to close. Mine was constantly open. Once I got the ET tube under control with the premarin, my meds began to work and I was eventually able to get off of the premarin, but continued to need my medications. I too believe that PET is a very rare condition and is caused by MANY DIFFERENT reasons, and is probably misdiagnosed alot. Just my thoughts...that's all.

Last edited by someonecares; 08-28-2008 at 08:03 PM. Reason: Afterthought

 
Old 08-29-2008, 09:33 PM   #10
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Re: For all Patulous Eustacian Tube Sufferers

I was bedridden for almost a year before I used the premarin. I was in a constant state of terror for no rational reason, and I was horrified to be alone in one room, even if if someone were in the other room next to mine. I made a 5 hour plane ride to the House Clinic, and was unable to sit up on the plane ride there. What stands out most in my mind is the fact that I could sit up on the plane ride back home after a week of using the premarin. I know this sounds extreme, but it's true. Remember these are symptoms of clinical anxiety and depression accompanied by a diagnosis of PET. It is difficult for me to relate to some of the symptoms like popping and autophany because there was so much else going on symptom-wise from the other illnessses. Mostly I remember the muffled hearing, and the tremendous pain that noise would cause me. This is what I meant when I said it helped me in different ways. It helped me to be able to start to function on my own and not be so afraid and intolerant of sound. It is difficult for me to answer your questions because this was not just a case of PET that was overcome by using premarin. Yes I had to use it every day. As far as side effects go, the Dr. said to me that it caused women to develop larger breasts. She said women liked that side effect, but men did not. I assume she meant there was the potential for this to also occur in men. I did gain weight all over......hard to say if I was eating more or if it was the premarin. Today I still have occasional problems with my right ear, but to me it seems more like bouts of Meniere"s....which my anti-anxiety med helps to some degreee when it occurs. I do not take the premarin any more. As JohnUK has told you there are so many symptoms that are similar in different ear disorders, it is important to get a correct diagnosis. If there is one aspect of what I have learned along the way that I would suggest individuals take note of it would be to research TMJ adjustments. The TMJ is so close to the ear itself that for some individuals, this might be beneficial in some way. Hope I have helped at all.....Lisa

 
Old 08-30-2008, 11:35 AM   #11
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Re: For all Patulous Eustacian Tube Sufferers

Robert...I think you are making a wise decision holding off. Do not be pessimistic about the thyroid medication. If there is something I have learned from my process of recovery, it is that anything can cause anything in the human body. When individuals have a healthy thyroid, it sometimes has the effect of aligning the cervical vertebrae in the neck and this may in turn effect the alignment of the TMJ. I am not suggesting that the thyroid or the TMJ is the cause of your or everyone's inner ear disturbance. There are many different causes. When I mention TMJ adjustments, I am not referring to having a piece of plastic, or whatever it is, placed in the jaw. I am unfamiliar with this remedy, so I can not say much about it. I'm sure it is very helpful to individuals with different problems. I am referring to an actual chiropractic maneuver that aligns the ball and socket of the TMJ. Mine goes out quite frequently so I am glad I can put it back in GENTLY. It takes several tries each time but it is worth it for me. I recently read something on a discussion board where someone said they had had that adjustment done and it was ferocious. I don't know what they meant by that. I think there are different ways different professionals are doing it. I can see that it would be ferocious if the jaw was so tight it wouldn't budge. That sounds dangerous and scary to me, but I don't know about the different ways it's done. I do know that it can affect the alignment of the spine in a positive way if it is something that is actually indicated in a person. I have recognized in myself that I have been a jaw clencher on my right side for a very long time. I try to be very self-aware of that response now. Thank-you for your compassion and well wishes. I consider myself one of the lucky ones. I wish everyone luck on his/her search for answers. As always, please share with others......your successes and your failures. It is so important..... Lisa

 
Old 08-31-2008, 10:15 AM   #12
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someonecares HB User
Re: For all Patulous Eustacian Tube Sufferers

I was thinking that maybe even a physical therapist would be able to help a TMJ problem if indicated in a patient.

 
Old 08-31-2008, 04:45 PM   #13
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Re: For all Patulous Eustacian Tube Sufferers

Ironically my mother was on Armour also. It was the only thyroid med she could tolerate. The House Clinic was recommended to me by a Dr. at Scripps in So Cal. We thought maybe they could find something other doctors where we lived were missing. Of course all my tests came back normal again. By the grace of God, just as I was about to leave, I mentioned I had a muffled sound in my right ear. The doctor at Scripps said I would send you to an ENT here, but they would only check for the basic things, so he recommended the House Clinic. Thank God. I think technology has come a long way since then, probably even at Scripps, so of course, I am in agreement, as JohnUK and your ENT suggest, to have the battery of tests done. I am still somewhat fascinated by the fact that the ENT wants a trial period of 3 months before doing the tests. He sounds like a very good doctor who might be thinking a little outside of the box. Keep us all posted. Best of luck!

 
Old 09-01-2008, 07:33 AM   #14
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someonecares HB User
Re: For all Patulous Eustacian Tube Sufferers

I understand. When did you start taking the herbal concoction?

 
Old 09-02-2008, 08:57 PM   #15
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Re: For all Patulous Eustacian Tube Sufferers

I hope this is a sign of good progress for you, Robert. No, I do not use the premarin anymore. I'm waiting to hear from the administrator why our last 4 posts were considered off-topic. I am genuinely bewildered. I don't want to make the same mistake again or create a problem for you. Ive read and re-read the rules, but can't figure it out. Anyway, I guess he/she has a good reason.

Last edited by someonecares; 09-02-2008 at 09:25 PM. Reason: afterthought

 
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