So 3 years ago during my pregnancy I devolved this lovely old thing 🙄🙄 it lasted throughout my entire pregnancy. After I had my daughter it left a month later.
For the last 3 years I get what I call ETD "flare ups" a few times a year. Nobody understands how miserable, and I'm so glad I found a group that can understand. I don't think ETD has fully gone ever, but last Tuesday I woke up and I could just tell I was about to have a flare up. My flare ups last awhile- days, weeks, months. I hate it. I did get lucky once and while traveling in my car through a high elevation my tube popped back into place. It made a whirring sound and I was so very happy. Anyway this time my flare up was a bit different. Normally I can hear myself breathing and I echo in my own head. It feels like I'm talking underwater. This time my ear feels super full and that's about it. So there's that. I have an apt with the EnT tomorrow am, praying we can figure something out. I read about a new procedure that can be done with a catheter and inserting a balloon into the tube, anyone here have this?
Anyone have any tips or tricks on how to help me feel better? I know all the usual things but thought maybe there was something else I could do. When this flares up I feel like a crappy mommy because I get miserable as soon as I wake up. Although I never let on to my daughter how miserable, my husband surely knows it- and I'm sure he's tired of hearing"you just don't understand"
Any help would be much appreciated please❤️
Hello Ashley.
I see you wrote this 18 hours ago - it has only just reached me - and you said you were to have the appointment with the ENT 'tomorrow morning'. I may be too late to reach you before the appointment but your description of hearing yourself breathing and echoing in your own head (autophony) sounds like patulous eustachian tube (stuck in the open position). I have this also and in the years before I developed the autophony I experienced a feeling of fullness in that ear so that I thought that the ear was blocked. This fullness is felt whether the eustachian tube is blocked (true ETD) or open (PET). I haven't got a 'fix' for you but it took me two years to get a diagnosis even though I knew, based on a scientific background and intensive Internet research, what was wrong; in the end (April this year) I found an audiologist who would do the proper test for this and got the result that was indisputable. No ENT or audiologist who had put the 'thing' in my ear and expected to see the ear drum move as it would with an open eustachian tube has actually seen this movement. I think this is because they tilt my head in the procedure and this closes the eustachian tube. Let me know what the ENT says; they can be quite dense! Also ask any questions and I will try to answer them for you.
Good luck.
Apologies ENT doc who writes on here. You are not in the dense category!
My next appointment is on Wednesday. Eight years of fluid behind the eardrums, a chlosteatoma, surgeries to place tubes for drainage, surgeries to repair holes from tubes for drainage, then fluid filling up when eardrum is repaired and without a hole. Severe hearing loss in right ear 5 weeks after tympanoplasty because it is full of fluid. The constant sound of my heartbeat in my ear. Pressure. I have been reading and investigation Eustachian Tube Balloon Therapy and my ENT, who is very skilled and knowledgeable in all areas of the ear, has agreed to do a scope of the nose and throat to determine if I would be a candidate for this procedure. I would appreciate knowing more from those who have had this procedure, and also what questions I should ask on Wednesday. This is more troublesome and annoying than I can properly explain.
Could you please explain more.
I had the tympanometry ( the device they put in your ear which measures the pressure) many times and it came back or normal or close to normal everytime. Are you saying theres a wrong and right way to do it ?
I don't know if mine is etd but mine feels full on the right side and thumping like crazy when I overexert myself like cleaning up.i can't take it anymore....cant sleep....cant think ....out of money for constantly going to doctors ...im losing my mind
I think my ETD is about 75% TMJ and 25% allergies. I've tried going without one treatment to see if the other worked and it only seems to get better with both.
I am currently taking azelastine nasal spray and Flonase for allergies and I'm seeing a neuromuscular dentist and a TMJ physical therapist. I have myofascial pain syndrome with tight muscles and knots. She does intraoral massage and jaw adjustments. Plus I wear a bite splint.
Most days I am at 80 to 90% normal but I do have flare ups and drop back down into the extremely annoying category of maybe 20 to 50.
Hello Ashley, So very sorry to hear that you too are suffering Eustachian Tube Dysfunction. I live in England and have sufered this dreadful dibilitating condition since the early 1980's. I'm pretty sure mine started through breathing in pollen on a camping trip with our touring caravan to the New Forest. Both of my ears blocked so bad it made me feel ill. I couldn't hear what people wre saying and felt just like you are. It's a condition that drags us down and makes us feel miserable and bad tempered too. If you're are seeing an ENT consultant he will clearly know that you have a build up of thick gluey mucus behind your eardrum. Unless there is a perforation there is no way for it to get out of your tubes. In total I've had a seven perforations in my left eardrum, however, the hole is so tiny, the mucus can't drain out, so I see my ENT consultant and he uses microsuction to suck it all out, the feeling when he's finished is wonderful, until due to allergies and sinus issues the cycle starts all over again. Fortunately, these days it's only my left ear that get blocked, still such a horrible feeling though. It's a shame you haven't listed the things you may have tried. Head with a towel over boiling water and breath in the steam for at least twenty minutes. Try pinching your nostrils together to try and pop your ears, but if they are really congested, this doesn't aways work for me. Not a thing that's recommended, as you could potentially perforate your eardrum, like I have on several occasions. But I just have to do it to try and get some relief from this wretched problem. Unless people suffer ETD, no one knows how bad it is. I suggest you get your husband to read some of the posts on this forum and he may understand just how bad it is. Your consultant may suggest the Balloon dilation, or even ptting tubes in, sadly, mine has told me as I've got such a chronic condition it wouldn't work. Maybe yours has started due to allergies. If you've just had a baby it could be hormonal, but unlikely. Try taking a daily tablet (antihistamine) I take Citrizine, just to see if they help. To get a really quick fix your doctor may recommend a 20 day reducing course of Prednisolone steroid tablets. After being on them for approx 3/4 days your ears will completely clear and all the inflammation will go too. Your tubes are probably very swollen from all the inflammation. I know doctors don't like to prescribe these tablets, but if you are desperate, like I was, they are the only uick fix. Once your ears are clear, they may never block up again. Do you find you get a blocked nose and sneeze a lot ? if so a daily antihistamine will help. Also do you suffer from sinusitis ? I make so much mucus due to allergies I definitely know that my problem. If he won't prescribe the steroid tablets, ask him for Flixonase Nasule drops. I'm using them at the moment and they have unblocked my ears for the time being.
Wishing you the best of luck Ashley and do report back on the forum how you got on.
Anne
I'm sorry if I have confused you, M992. I was talking about the otoscope being used merely to look inside the ear at the eardrum. I am sure readings of the pressure in the middle ear are accurate. It is true, however, that if you have the relatively rare patulous (open) eustachian tube, you will get a normal pressure reading just as you will if there is nothing wrong with the eustachian tube. An audiologist I saw dismissed the idea of my left ear being patulous as she said she "would have seen the respiration coming through" and an ENT later also looked for movement of the eardrum with respiration but neither saw this. There is a special test that has to be done involving looking at the pressure with normal and with heavy breathing. I found an audiologist who would do this test. She said she had never been asked for it before and practised on the people in her clinic before testing me. She then said she had never seen the result she got for my left ear. The ENT I saw on her recommendation confirmed the diagnosis though he could not see the movement of the eardrum. I hope this has clarified what I said earlier.
Hello bjhodg. I'm afraid my problem is different to yours although I know how debilitating ear problems can be and I see that you have suffered much. I suggest you go to Patient Forums, select Ear Problems and then type into the search box 'Eustachian tube balloon dilation'. Over the past couple of years I have read many entries where people talk about this procedure. Some are just asking the questions you are asking but a few have had the procedure and you might be able to learn something there. Best of luck.
Hello Maureen, I found your comment most interesting. However, if our ear/ears are blocked it's obvious to me that we have ETD....why else would they block. I find it very strange that this sort of condition can come on out of the blue and seems to stay with us. I've suffered this condition for almost forty years. My ENT consultant won't perform Balloon Dilation, or put in tubes due to my chronic condition of Sinusitis and Allergies. It's something I've had to learn to live with and tolerate. Some days are better than others, but I have to take prescription mediaction to keep it in check. I've had 7 perforations already this year in my left eardrum, however the mucus is so thick and sticky it just will not drain, so I have a procedure called microsuction to remove it all....feels wonderful once done. Maybe our tubes just get smaller for some reason. Not too sure why our pressures change too. It feels different when pressure blocks the ears, than mucus sticking them together. I was told by my GP that if the eardrum is shiny, that's good.....shame we can't look down our own ears. But we don't need confirmation when our ears are blocked, as it's such an awful condition we know. So wish there was a permanent solution for this problem, as it causes deafness and tinnitus too.
Kind regards
Anne
Me again Maureen, I forgot to ask. What is your problem with your ears, if you don't suffer Eustachian Tube Dysfunction ??
Anne
Hi Ann, has your ETD actually been diagnosed as being TMJ ? I think if that were that case we'd all be suffering TMJ because we all suffer ETD. I find it very hard to believe it's due to jaw issues. I definitely know mine is caused by sinusitis and allergies, plus post nasal drip, all of which causes the eustachian tube to block. I can here the crackling of the thick sticky, but clear mucus in there. I suffered TMJ a few years ago after some dental treatment. That condition lead me unable to open my mouth very wide due to the pain. However, after a week it got better. I have suffered the condition of ETD many, many years before the dental treatment. I think ETD is one of the worse chronic conditions we can suffer. I can cope with a blocked nose and even sinus problems, but blocked ears are something else !!
Anne
Hello Anne. I have read many of your entries. Sometimes my condition is put under the Eustachian Tube Dysfunction umbrella, as it certainly is a dysfunction but other times it is put in its own category and labelled PET. My problem is a patulous left eustachian tube. It is stuck in the open position. As a result I hear my own voice, distorted, in my head whenever I speak, hear my breathing loudly, hear chewing noises. It goes away briefly if I bend (but can't - bad back issues) and goes away when I am lying down (certainly a blessing) which the ENT specialist said was 'classic' for this condition. Before these noises (autophony) became permanent, for many years I felt a fullness in that ear, especially initially after a singing practice (was in a choir but an impossibility now) and as the years went on this became more frequent. Because it felt like a blockage I thought it was a blockage and hence, I thought it was your eustachian tube disfunction. In my case, however, it is the air rushing up the eustachian tube that gives that sensation of fullness. The ENT specialist told me to put on weight as a patulous eustachian tube can be caused by weight loss (but also - how? - by weight gain!). I have not lost much weight and have tried to put some on but have gained only about 2 kg in four months and there is no difference in the ear symptoms. Within the last four months I have experienced something else that I cannot explain. The ear 'crackles'. It can last for hours and I thought it must be thick mucus in the middle ear but it stops when I go to bed and does not reappear next morning. I suspect (but specialists are dismissive) that my condition is linked to an autoimmune disease from which I have suffered for 47 years, Sjogren's Syndrome; this destroys moisture-producing glands. I write this at length to you because I think you might be interested, even though it is not your problem, because you take an interest in so many other people. I live with it - there is no option to do otherwise really - but it is isolating and rather soul-destroying, just like the condition which you have to bear. I take comfort from these forums which have become for me like the family I do not have and I thank all who add their bit. I wish you well Anne.
Maureen
Aah! that was a lovely reply Maureen and thank you so much. I too sometimes suffer the air in the tubes, which is, you're right, totally different from sticky mucus sticking them together. Are you in the UK ? I bet you're in the States. Can't see many UK followers on this forum. But of course unless we ask the person, we wouldn't know. I usually do ask, as some of the over the counter medication is either a different name or they can't buy it.
When someone is really suffering and God knows I know how it feels, I recommend they request Prednisolone steroid tablets. Once again I've just finished a course and have felt wonderful, right up until the cycle started all over again. Now back to square one. But using quit stong nasal drops at the moment that can't be used for longer than 6 weeks. So not too bad at present.
My worse fear is lightening striking twice (which it could) and getting Pnuemoccal meningitis again. It's hard to believe how many years I been suffering this wretched condition that caused it to happen. the mucus sat in the eustachian so long it turned bacterial, crossing the blood brain barrier and going to my brain. A very nasty episode and wouldn't want to have to go through that again. Any sign of an earache, that would indicate a possible infection I'm put on antibiotics. Of course all the antibiotic treatment leads to a compromised immune system, so it's a catch twenty-two !!
Great writing with you Maureen and hope you get yourself sorted too.
Kind reagrds
Anne
Thanks all for the messages.
Went to the Ent yesterday and was told that I have Meneires Disease on top of the ETD. I honestly hate everything right now, truly. This is such a dabilatating disease and the ETD is the cherry on top.
I was prescribed a water pill, and prednisone. I'm truly hoping one of those things help me a little because I'm literally losing my cool fast. The ent said to contact him back in 2 weeks to let him know how I feel. He said this wouldn't work overnight which my flare up has already been a week today. Ugh.
The ENT and dentist are working together and they think my ETD is due to allergies and TMJ but mostly TMJ because I didn't have much improvement with allergy treatments but when we added TMJ treatment I got better. When I stopped allergy meds I got worse. Restarted them and got better. Stopped TMJ treatment and got much worse. Restarted and got better. So that is why they think it's both. With myofascial pain syndrome you get super tight muscles all over. Those tight muscles and pull your TM Joint out of place and cause the ear problems.
This is from a neuromuscular dentist's (Dr. Tannenbaum). It explains it better.
Ear Problems & TMJ
The experience of ear symptoms in patients with TMJ is very predictable due to a number of factors. Most importantly during growth and development the structures of the ear, the TM Joint and the jaw muscles originate from similar cells and as a result share nerve pathways that can influence muscle tone and performance. For instance, the muscle that determines the size of the Eustachian tube (influences ear pressure) is directly influenced by the same nerve that serves the jaw muscles and TM Joint. As a result, a TMJ problem can lead to changes in the way the Eustachian tube effects the ear, at times leading to symptoms of ear pressure, fullness, clogging, pain and even ringing.
In addition, the tension across the tympanic membrane and the position of the malleus bone can also be altered in patients with TMJ. As a result ear symptoms can emerge and linger. Ringing ears or tinnitus is only occasionally related to TMJ problems. A relationship may exist when the tinnitus changes during jaw movements and or eating. If the tinnitus (pitch and intensity) does not change as a result of jaw function and remains constant on a daily basis it is unlikely that TMJ therapy can help.
Sinus Symptoms & TMJ
With regard to sinus symptoms it is common for patients with TMJ to complain of pain and pressure in their sinuses, despite the fact that there is no sinus disease, infection, or inflammation. The reason is due to mechanisms of referral, where the site of the symptom is not the origin of the symptom. Jaw muscles in particular can refer pain to the sinus region often making a diagnosis difficult. Muscles that are tight, inflamed, and fatigued due to overuse behaviors and sleep bruxism commonly lead to sinus symptoms. As a result TMJ therapy that reduces muscle problems often leads to the relief of the reported sinus symptoms. Some common treatments include jaw exercises; jaw muscle conditioning, massage, bite plates, and injection/needling therapy that relax tense overworked muscles.
The bottom line is that if a patient seeks care with ear and or sinus symptoms that have no apparent relationship to disease, injury or illness, then there is a good chance that an underlying TMJ problem may be responsible.
Wow, you've educated me this afternoon Ann. which country do you live in ?
How would I find out if mine was in fact due to Tmj (that I only thought was due to a dentist being too heavy handed, like mine was that resulted in a very stiff jaw.
When I next see my ENT consultant I will definitely ask about this, Is the treatment for TMJ and what what it be ?
Thank you
Anne
Hi again Ashley,
The Prednisolone will definitely work in approxiamtely the 4th or 5th day, like mine did. So happy that you will soon feel some relief, if only to unblocked your ears. The Meneires is something entirley different and it's no wonder you've been feeling dizzy. A friend of mine had that and actually fell over from how dizzyness. Hopefully, the Pred. will sort that too. I thinks Meneires is due to a virus, not sure.
It's so brilliant we can support one another on this Forum. Do let me know once the Pred. has kicked in. You may find you won't be able to sleep for the first few nights of taking it, but in my opinion, that's a small price to pay for having nice and clear ears. your sleep pattern will resume once you've finished the course. May I ask what sort of course you were prescribed. Was it a weeks, taking 6 tablets per day straight off, or was it a 20 day reducing course like I had. I have found the quick courses do not work for me and once given only 6 days treatment had to go back for more.
Kind regards
Anne
Hello again Anne.
Thank you for your warm reply. This is just to tell you that I live in Melbourne, Australia, though my roots are in Ireland, Scotland and England.
With best wishes always
Maureen