ETD only while weight-lifting or on high intensity sports

Sorry for the smiley face.  I don't know where it came from;  It was supposed to be a bracket!

Hello maureen thanks for the insightful reply. Other issues I have when this happens are hearing loss, dizziness/vertigo, hearing myself breathing (echoing), the hearing loss actually is caused because I hear myself breathing, it feels like I'm in a tunnel. And yeah, I get anxiety (panick attack when this occurs)

If you have the same condition, is there a cure? I live in the Netherlands and I don't know how far the expertise is here on this condition.

Actually, not only does the echoing cause hearing loss. When I try to clear my ears, taking a deep breath through my nose causes hearing loss and vertigo.

Hello Ibor, the hearing yourself breathing is part of autophony which does occur with patulous eustachian tube (abbreviated to PET).  It has been described as being like having a bucket over your head but your tunnel is a very good image for it.  I also hear my own voice that way and the sounds of my eating.  These noises are transmitted through the open eustachean tube as well as through the ear.  With the voice you do not hear the two sounds simultaneously, thus the muffled effect (I think).  I do also have some 'disequilibrium' issues and had vertigo attacks from Dec 2011 to early 2015 but I do not know if these are related to the PET.  There is no easy cure it seems, although I will know more after I have seen the ENT this week.  I would be rather hesitant about surgery; it can go wrong.  Try looking up patulous eustachian tube/autophony on this forum and on the Internet in general; there has been quite a bit written about it.  Then, armed with your knowledge, find a good ENT who can make an accurate diagnosis.  I would ask, before you make the appointment, if they have dealt with people with patulous eustachian tube.  Also you need to make sure you are tested with the symptoms present or induced.  I think that was part of my problem with the ENT's audiologist in mid-2015; I didn't have the symptoms at that exact time and didn't know enough to realise that I needed to have the symptoms and that they needed to do extra testing for the condition (not a normal part of what an audiologist does).  The causes of this condition seem to be not well understood and may differ from person to person.  One suggested cause is weight loss.  I suspect mine may be due to an auto-immune disease I have had for decades though, if so, it is a rare symptom.  I, too, am an immensely anxious person and anxiety could possibly make it worse but then anxiety probably makes everything worse!  I hope I have not scared you.  Do not lose heart at this stage and let us know how you get on.  We care!

Maureen

Thanks Maureen.

It's very frustrating isn't it! Please let me know how your appointment goes. I've already looked up PET and yes, it's very complicated. I will call my doc next week asking them to do more examinations. Saying we can't find anything is not the way to treat patients with this problems!!

Hello Ibor

As promised, I am reporting on the ENT appointment Wed. but there is (as I expected) no good news.  He told me that I was the first with this condition to come in already diagnosed!  He confirmed the diagnosis on symptoms, the classic one being that the autophony goes away when I lie down.  He said there were a number of treatments that had been tried which meant that none of them really worked and some were dangerous.  He said there was only one solution - I needed to put on weight.  I am not overweight certainly but I am not skinny.  I would have said I was 'normal'.  I have lost a little weight over recent years but I am talking only about 5 kg or ~1/12 of my body weight over maybe 6 years.  Anyway he said to try to put on weight and see if it makes any difference.  He also said the condition is not as uncommon as thought; in fact four of his ENT colleagues have it.  His second 'recommendation' was about attitude.  He told me to stop focussing on it but in fact I don't allow it to interfere with my normal activities - I can't as I live alone and with no support - but it is always there so there is an awareness that is unavoidable.  Some patients, he said, are not bothered about it at all; go away happy just knowing what is happening.  I would suggest that some of these do not have it, as I do, through every waking hour except for about 30-40 mins after I rise in the morning.  Also said patients are probably healthy otherwise whereas I have a plethora of painful and debilitating other ailments.  I went away unhappy and just tried to make myself feel better by repeating to myself that he was trying to help.  I cannot put on weight - lactose and fructose intolerances, salicylate and sulphite intolerances, Sjogren's Syndrome - 47 years of a progressive dryness disease and hence dry mouth, brittle teeth and loss of sense of taste to a noticeable degree.  Never mind.  I do understand about your need to do the high intensity exercises to help with the mental issues.  With me it was singing that helped lift me out of the blackness but singing has the same effect as exercise respiration-wise and the voice in the head issue rules it out.  If you have lost weight you could try putting on a bit more though I have read of this as just one possible cause, certainly not as definitive as this ENT seemed to make it.

Life goes on Ibor.  As a member of another forum with a different condition once wrote, it may not be the life you would have chosen but it is all you have so you have to make the best of is.  I wish you all the very best.

Maureen xx

Hello Maureen,

First of all, I'm sorry to hear the ENT can't help you! I have an appointment this monday and I think I will be disappointed too.. The weight loss might be one of the reason I'm having ETD or PET or whatever is wrong with my inner ear. I have lost a lot of weight 7 years in a row (after gaining it from medication) but I really doubt it's the cause. Anyway, I have to wait till monday to hear what my ENT has to say. We're in the same boat giving up on something we really loved to do. I'll update you about what my ENT has to say.

Just what I expected, nothing! My ENT and her team never heard of a case like mine and don't know what do! I just don't know what to do or who to turn on, it's very disappointed and infuriating!

Hello Ibor, I feel for you.  It is so disappointing and one feels so helpless and powerless.  I was almost 100% sure of my diagnosis so it was just a matter of finding an audiologist who would do the correct testing, testing that I had read about on the Internet, to get an 'official' diagnosis but that is not really of much comfort when nothing can be done.  Aspects of your problem sound very much like mine but there are some differences.  Your symptoms of hearing loss and vertigo when taking a deep breath through your nose are symptoms I do not recall ever reading about and I have been reading about ear problems for two years.  What tests did your ENT team carry out and did you have the symptoms or were they induced while you were being tested?  Or was it all mostly verbal?  If, on reflection, you feel that there was insufficient testing done, it might be helpful to get a second opinion.  I wish I had something else to offer.  My ENT, who is really one of the good 'listening' guys, said he would keep me in mind and also ask around to see if there is anything else to offer.  I will pass on anything I learn.

Maureen

She didn't test much, a look into my nose, ear and inner ear. I don't even have a diagnoses. I do have a second opinion paper ready for another hospital though. But I don't expect much from them. Like you, I too, feel helpless and powerless.

Yeah I recon, they're like textbooks, if your problem is not "listed" they send you home with no solution. Do you have ETD or PET? How is acupuncture working out for you?

Etd and soasms in there from tmd/tmj. But the ent was not helpful. The maxiallary surgeon told me and i have a gaurd their solution are pills. Nah. Then my go sent me to pt for it.hurt too much seemed too young so nah. Then i found a traditional chinese medicine MD in the area and  i was like im trying this. The MD is a regular internist butntrained in TCM and does acuouncture with a fellow TCM MD. Went for eval. They listened and had a lot to say explained so much to me, i started last saturday. So i cant say yet. Its all too new. I will let you know she says at forst it feels like your body is in detox from so much unflammation and such then slowly it calms and heals. 90 percent are helped by it. But it tales time usually you know by the fifth visit if it will be helpful to you. I did one. Had a couple of spasms today got scared and then reminded myself the explaination from the doctor. Its all frustrating but im hoping for the best. So many had good results that i know. So many. So way worth it. But use a TCM MD. No games and you want knowledable and experienced. It took a while to find what i specifically wanted. I want this gone. If you are in America you can do a search though your insurance. Because MD you can get coverage as well. So a lovely bonus. They are around here arent many but they are around.