I hate ETD
Posted , 8 users are following.
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??
0 likes, 42 replies
maureen05275 ashleysnyder
Posted
ann1013 ashleysnyder
Posted
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.
anne05078 ann1013
Posted
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
ann1013
Posted
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.
anne05078 ann1013
Posted
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
anne05078 ashleysnyder
Posted
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
christine82388 anne05078
Posted
Hello Anne,
i have only just found this forum and am very grateful for your answer as it appears to explain my issues. I've at last realised from all the patient info website that I have Eustachian Tube Dysfunction. Been suffering for some years. I'm a lifelong hay fever sufferer (which has improved since I've been much older) and am allergic to other things too! I have perpetual mucous build up at the back of my nose and threat and have very muffled hearing in my left ear.
Holding my nose and breathing out relieves it for a short time.
I've been reluctant to use antihistamines regularly but perhaps I should. I use Beconase nasal spray instead but it doesn't help much really.
As I had a great deal of itching in my left ear too, I have had steroid drops which helped that.
(Otitis Externa). I feel this my be related but ENT very disinterested. These conditions may not be a matter of life and death but are very very annoying!
christine82388
Posted
Also my problem seems so much less severe than yours and others on here. Commiserations to you all. I also hope it doesn't get worse. Does anyone need hearing aids, and would they help anyway?
anne05078 christine82388
Posted
Hello Christine and welcome to the forum. Everything you suffer, I do too. Itchy left ear drives me mad. I take a daily antihistamine called Citrizine and find it certainly helps. It's all the mucus we make that is causing the problem with Eustachian Tube Dsyfunction. It's mainly my left ear, but years and years ago it used to be both. Muffled hearing, loss of taste and smell, headaches and wose of all inflammation. Not too sure how many of my posts you've read. I've never been prescribed steroid ear drops, but then again I don't ever think I've mentioned this when I see my ENT consultant twice yearly. I didn't find that Beconase helped me, however, flixonase Nasule Drops, a 6 weeks course does wonders. When I've finished those I revert back on Flixonase Aqueous Spray. Helps for about 6 months and the cycle starts all over again. This is such a miserable condition and drags us all down. Like you've said, as it's not life threatening, it's no big deal, however it is a very big deal to the sufferers. And as you may have read I contract Bacterial Meningitis through my ears being blocked for so long with the mucus sitting in the eustachian tubes, turning bacterial, crossed the blood/brain barrier and bingo meningitis. that was a dreadful time and wouldn't want to go through that ever again, or anyone else suffer the same fate. I never experience earache like I did prior to the illness. Once earache present it's always wise to protect yourself with antibiotics. You may also have read that I've taken Prednisolone steroid tablets to give me a few months relief from this dreadful condition. Smell and taste returns as all the inflammation goes, all mucus, post nasal drip disappears too. I feel wonderful, until it all builds up again through my allergies and rhinitis.
Which country do you live in. I'm in England
Nice messaging with you
Regards
Anne
christine82388 anne05078
Posted
Hi Anne, thanks for your reply. I have read all your back posts as I find them very very informative.
Awful that you've had Bacterial Meningitis-and this just shows that these conditions can develop dire complications.
I am going to try antihistamines for a couple of weeks and if things don't improve, I'll ask my GP for the Flixonase nasal drops that you've found helpful and the flixonase nasal spray instead of Beconase. I have nasty headaches intermittently and wonder now if these might be connected. The problem with being menopausal is that I blame headaches on that!
I'm in Cardiff and also value the NHS.
Thanks for your help
Chris
anne05078 christine82388
Posted
Hi again,
Nice you're in England, as speaking with people in other countries
medication can be so different with names.
I sailed through the menopause thankfully, but so still get headaches
from sinusitis, but happily, since been on these different meds they're
not as often.
I really don't think our English climate helps with allergies.....mould
from spores in the damp weather, and pollen in Summer. I've been
taking antihistamines for years and years, never had any problems
I used to take Benadryl until I read the box and it said stop using
after the age of 65, so transferred to Citrizine. Non drowsy, but
when I take one at 5:00pm by 9:30pm I feel lovely and sleepy and
get good nights sleep. House dust is also bad for me and know matter
how much I damp dust it's so hard to eradicate completely. I'm a clean
freak, so always trying to keep dust down. I've purchased machines to
help, but they are worse than useless !! I've found the round plastic electric
ball type help, as I change water every other day, and it's green from the pollen
so just goes to show....mind you that is in the conservatory, but we've got one
of those screens when the door is left open when it's hot. That's something
else, hot weather blocks me up and if it's humid my ears block up badly.
Yep, give the Flixonase Nasules a try first, then the Flixonase Aqueous Spray.
Give it time, possible a few weeks. Don't give up if it doesn't work straight away.
ps I'm on face book if ever you'd like to chat on a personal level. I've friended
a couple of ladies that way from the Forum. One lives in Wolverhampton and
the other Bournemouth.
Anne
ashleysnyder
Posted
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.
anne05078 ashleysnyder
Posted
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
ashleysnyder anne05078
Posted
Hello Sweet Anne!
You were spot on with the prednisone, my ear feels better every day now. It's not completely free but I can tell in a few more days that it will be!
Anne I wanted to ask you, how did your condition start? Did it come and go? Did it come and just stay? How often are you having this? Always or do you have flare ups?
I'm just trying to figure out about why this happens to me a few times a year with my flare ups.
The first few times I had it, I def had PET ETD- now the past few years after my daughters birth I have ETD. It's surprising me how fast it seems like the prednisone is working which is starting to give me great relief as I've been so miserable. To answer your question, my ENT has me on the reducing 20 day prednisone and 1 month of triamterene for the menieres.
My ent said he would make me his special project, and that makes me really happy. I had a bit of a break down in his chair.
They did several tests, the pressure one and he said both looked perfect and the hearing. Which my ETD always acts up in my right ear- I don't know if I could handle both, I just really don't. So sorry you to deal with that.
Also I do have allergies and I wasn't taking them daily (Zyrtec)
Like I should have. It's summer here in the US and i live in PA. The week before my flare up, our temperature dipped down into the cool 50s and I suspect this had something to do with my flareup.
Back to my hearing test, sorry I'm jumping around 🙈 But there was a difference in my hearing and since my legs suddenly swelled along with my ear this time, that's why he suggested Ménière's disease as possible culprit.
It's so hard to explain to them what you have going because from his end I look fine. I read this horrid ETD onky effects around 4% of the US. My ent didn't suggest anything as far as draining mucous out but I did ask him about the balloon dilation as I have been researching it.
I would love to have another child but don't think I could bare have ETD the entire pregnancy without relief. I did have sinusitis along with it and Now I'm wondering if even though I'm not feeling the common symptoms of sinusitis if I do still have it. My daughter is 3 and I have flare ups 2/3 times every year. I'm hoping this doesn't become a permanent thing because the flare ups are painful. I will say that my ear pops in and out daily from the tube so that has never gone. Sorry I'm jumping around so much but as I type I'm putting some things together.
Your right about the prednisone it does keep you awake 😬 And I've called back to see if there's anything I could take to help sleep.
One more thing, my ent told me to stay about from really salty foods and milk. Have you ever tried this?
I forgot to mention some things I do to give myself relief.
I turn my shower on hot and go in and sit on the far end to get the steam, after doing this my ear will start popping in and out really fast. However this time, the steam didn't help one iota.
I do the Valsalva technique with holding my nose and mouth shut and blowing but that doesn't really give too much relief.
When I lay down I do feel the best as well as when I'm sitting if I lean forward.
I don't like to eat anything with a flare up because of the feeling/sounds and I've been known to hop in my car and drive to high elevations with hopes it would pop back in. I got lucky with doing this once and try every single time.
Also I told my ent that the very first time I had anything noteworthy go wrong with my ears is during my very first flight when I was 16, my ear popped and didn't go back into place until we came back home from our trip. I did have PEt that time as I could hear my breathing, my heart, basically felt like I was underwater talking or that I had a bucket over my head so I suspect even from an early age (I'm 34 now) that I had this but couldn't explain what was happening.
Anne does prednisone help you like this every time you take it!?
Has your ETD progressively become worse as the years have gone?
I had both my husband and mother read through these entries and other threads so they could understand me further. Why I become very snappy and get into sweats and become panicky. I often have panic attracts when this occurs.
I was just thinking how grateful I am to be a stay at home mommy right now before my daughter goes to school. I'm not sure i would be able to hold a steady job as this creates severe panick attacks in me.
Thanks for the info Anne! Would love to hear more about this and find any info extremely helpful.
anne05078 ashleysnyder
Posted
Hello Ashley, I can't tell you how happy I am that the Pred have started to work already. Also glad that your were prescribed the 20 day reducing method. You'll feel so much better, I guarantee it. Sadly, these tablets aren't good to take too often (read leaflet in box) I have to have them twice a year just to give me relief. Don't worry if you find you're not sleeping as that is a side affect of them. I used to have to take them also for flare ups of my asthma, however since getting older that seems so much better. Pred gets rid of all the inflammation that probably is swelling out tubes making them impossible to drain. Mine started back in 1983. I've repeated my story so many times and I hope I won't bore people. However, it's very omportant to know that ETD can potentially turn very serious.
Back in 1994, I had such a bad episode, both ears completely blocked, also somethibg I've never suffered with ETD, but that time I had a really bad earache too. This followed by seriously bad headache and I was eventually taken to hospital suffering bacterial meningitis. The mucus had sat so long in my tubes it turned bacterial, passed the blood/brain barrier and bingo, meningitis !! It's always adviseable to see your doctor if the blocked ears are accompanied with an earache. I'd hate for anyone to go through that dreadful illness. Sadly, I was left too long and I lost the sight in my left eye and hearing down in right ear. I thank God that I didn't die, as I was told had I been left another hour I would have. I also suffer dizziness when I lie on my left side in bed. so, lucky, as it could have been so much worse.
I can't believe all these years on and I'm still suffering the same thing ETD !! I think because I suffer chronic sinusitis and allergies my ENT consultant is reluctant to carry out any surgery. I did have a sinus operation a year after recovery. Which helped for a while.
Just in case your problem too is sinus and allergies, when you've finished the pred. ask your doctor to prescribe Flixonase Nasules (I'm using them as the moment) they can be used for a max of 6 weeks. My ears are still clear. When I've finished them I will then revert back to th Flixonase Aqueous Nasal Spray that I use am/pm every day. I lost my sense of smell and taste thirty years ago and they only return when I'm on the Pred. Because I sarted the Nasules when I'd finished the pred. I still have those senses. Bt they will go again once I'm back on the spray. Just wonderful to be able to smell and taste.
I'm so lucky as I have a brilliant ENT consultant and also England has the wonderful National Health Service. We don't have to pay for anything. Consultantions, Operations or prescriptions. So England does have something going for it. Years ago when my ears became so clogged the eardrum actually perorated. It sounded like a thunder storm in my ears, but again did't drain enought, so back on antibiotics. Because I use the method of pinching my nostrils together when ears are blocked I have in fact made a tiny perforation in my left eardrun, so tiny, again it won't drain fully. That's when I see my consultant and he uses Microsuction and sucks out all that nasty thick sticky mucus (he said is like chewing gum) so that would never drain. I've had that procedure done six times already this year.
Not too sure whether our damp weather in England causes my problem, but I've had quite a few allergies tests and all come back negative. But like my consultant told me there are hundreds of allergens outside and they couldn't possibly check for them all. I take a daiy Citrizine antihistamine and they help.
I do hope that I haven't repeated myself and told you all this before. I've told so many people on the Forum about my history and can't remember who I've told LOL
My husband is extremely understanding when my ears are bad. But lets face it there is nothing anyone can do for us, so little point in keep moaning. He knows when it happens though, as I'm extremely miserable and just don't won't to do anything, or go out. I haven't taken a holiday abroad in four years through my wretched ears, so have to be satisfied with staying in England. Thank goodness we've had a nice Summer this year, there are many, many lovely places to see here and beautiful beaches too.
If I haven't answered all of your questions, sorry.
List them again using paragraphs between like (1) (2) etc.
Show your husband (if he's interested enough) to read some
of the comments on this forum at how many of us are suffering
with ETD and how it makes us all feel. One poor girl that lives
in Dallas, hasn't got any Health Insurance, so can't afford to see
any doctors. That is so awful for her and can't imagine how she
feels. She got very cross withe me and another lady on the forum
last week. Something we both said and she took it to heart. I feel
so sorry for her though and understand her anger as that's how ETD
makes us all feel. I haven't seen her on here since and really hope she's
ok. She was talking about feeling stuffy. I made the mistake of asking
her if it was a stuffy nose, as I don't call blocked/clogged ears stuffy, I use
that word for a stuffy nose. She told me off lol.
So you live in Pennsylvania. I have family there too and they live in
Stewart Town....is that near you ?
Once again so happy you have started to feel better and am always
more than happy to help having forty years of experience of this
horrible condition
Best wishes
Anne
Anne
ashleysnyder anne05078
Posted
Quick question before I run off this AM. Yesterday I had really high hopes because my ear seemed to alleviate some. But today it still feels the same and quite full. Still popping in and out as it's still not back in place-
I mean don't get me wrong I'm not as miserable but will it take a few more days to get this going?
More to come later in regards to your questions ??