Buffalo, the palate flex thing I do...I am not sure if I learned it as part of my body's respond to ETD, or if I've always been able to do it but never really needed to or cared to. But it's called "voluntary tubal opening" -- I flex a small muscle (tensor veli palatini) in the back of my palate, and it will pull the e-tubes open briefly. Sometimes, it gives me a moment of great relief. Often, I'll hear a crackle/click in my ears, which is apparently the tissues at the opening of the e-tubes coming apart. During my appointment with Dr. Poe, I was able to repeat this maneuver during the video nasal endoscopy and verify right before my own eyes that it was, in fact, opening the tubes (there was a large video screen so I could watch). Dr. Poe said relatively few people have voluntary control of these muscles, and he seemed to think it was a good skill to have. However, because it's turning into an OCD like thing for me, it's a big curse mixed with a blessing. I can do it in secret and hundreds of times a day, since no muscles in my face move and there's no sign, outwardly, that I'm doing it.
If you look up e-tube blockage, you can find descriptions of how the middle ear space will absorb gases and then it will create a negative pull on the eardrum, retracting it inwards. That's really what the drawing sensation feels like to me, but I could be totally off since there's no way for me to know what's really happening. I think sometimes there is such a small amount of fluid involved that it won't show up on scans. But if you think about how tiny the e-tube is...width of a human hair...and then think about if the tube is inflamed or swollen or damaged...even a tiny amount of fluid could cause a great deal of suffering.
Hope everyone feels better today! No gunshot pops last night, so I'm grateful for that much.
The Following User Says Thank You to jenni9033 For This Useful Post: buffalonygal (04-26-2012)
I think it is interesting that we can all relate and have some very similar symptoms. I have had the creepy crawling sensation in the beginning. I actually noticed it too when I was on large amount of Mucinex. At first I kept thinking that was a good thing and that it was getting the fluid out.
I need to try to learn the trick of being able to flex the palate. The only way I get relief is through a jaw movement that is noticeable and the sound is audible to others as well.
I had no idea the e tube is the size of a human hair. No wonder it can cause so much grief!!! My ENT had mentioned that you can have trapped gas in the middle ear. I even tried gas x to see if that would help.
The whole issue of almost constant ear popping this is tough. It is so hard to not clear the ears non stop when that super tight feeling takes over. Especially when it brings a few moments of relief.
No gunshot pops is a good thing. I am having a couple a day, but thankfully they have been quieter.
I am on day two of a much less vibration/ reverberation in my ear that had the tube!!!!!!! It has been 5 weeks of enduring it . I am able to talk at my normal voice and not a whisper. I am so very thankful. I am attributing this to answered prayer because there is not any new medicine or procedures my dr's have done to bring me a small step forward to healing. Still dealing with most of the other symptoms, but very thankful for improvement!!
It is raining here in Tennessee today, but thankfully it has not worsened any of my symptoms. I hope you all have a good day!!
The following user gives a hug of support to LoopyLuci: buffalonygal (04-26-2012)
HI Ladies......well today in Buffalo its rainy damp and chilly..my ears are really bad..in fact my whole ear/jaw area feels so tight and swollen, i dont think the damp weather helps...i started taking the mucinex a few days ago (i had taken it awhile back, didnt help much so i stopped but started up again) and i DO notice the creepy crawling sensation is worse since im taking it..so im gona stop....i was hoping maybe it would help thin any mucous out...do u guys get pressure and tightness in your nose area also? my nose isnt really plugged just the same sensation i have in my ears sometimes affects my nasal area as well. Luci, i am praying for all of us on here..in fact, today at work, instead of obsessing over how i felt, i googled healing scriptures and kept reading them thruout the day......i really feel we need to depend of Jesus to heal us seeing that drs' really havent given us any longterm answers...im glad you are noticing some improvement..i pray we all do soon!!!! Jen, hope u are doing OK...keep us posted on your bloodwork!! Jenni, u flew to see Dr poe right? how was your flight with the etd? I fly next sat. - trying not to be nervous...........appreciate your prayers all goes well! i scheduled myself for a 1 hr deep tissue massage on May 9....the woman that does them is awesome..and i cant afford to go very often..so my mother's day gift from my kids is a massage..I CANT wait..........also hoping to get a chiro adjustment tonite or tomorrow...my son's best friend is a chiroprator and he fits me in whenever i need to see him...waiting for him to call me back...hoping i can see him tonite.......my whole back/neck area is SO TENSE. do u guys notice that u have alot of neck tension and when youre sitting do you ever catch yourself with your shoulders raised up towards your head? i constantly am tense like that and have to make a full effort to relax my shoulders..im like that even when i watch TV...i see my PCP next monday..im asking about flexeril for sure.......i HATE taking all these meds but i also want relief.......so frustrating!! Well i hope u have a good evening!
PS....dont know what the age range is here but has anyone thought of a hormonal connection to how we feel??? Im going to start keeping a record on how i feel...from 1-10 on my calander 1 being lousey to 10 being great..and see if there is any rhythm to good/bad days......just a thought............
Just haven't been feeling too well- I needed to get my kids out today though so we went over to their friends house again today. It was nice to get out and have a little company. It was sunny here today, but chilly. I was trying to avoid the ear popping today but it didn't work. I fortunately haven't gotten any jaw pain today even though I was popping my ears. I did get a pretty severe headache though, and I started seeing spots! Freaky. I just don't even know what could be causing that. I know migraines can do stuff like that to u but I was told that my headaches weren't migraines. So what's going on?!?!
I'm so over this ear stuff like Jenni said. Just fed up. I can't even really say much more guys. I'm just having a hard time thinking I might have to spend a long time like this. Saying prayers constantly. My family has been very difficullt thru all this, my own dad says that I'm a whiner, that his friend who has to wear hearing aids is way worse off than me....my dads friend is also 65. He's also not in my body so he doesn't feel how I feel. It's really disheartening when u have no real family support. I hope my husband doesn't think that way about me.
My dr's office hasn't called about my labs yet. I hope I'll know something before the weekend. I'll let u know what they say.
The following 2 users give hugs of support to: Jenmomof2 buffalonygal (04-26-2012), LoopyLuci (04-26-2012)
hey Jen...try not to be discouraged i KNOW its difficult...my family is tired of listening to me whine too...but they have NO idea how annoying this is.......its gota get better we gota believe that!!! My sons friend stopped by, he has a portable chiro bed and he adjusted me right here at the house..it was great...ears still full but the neck/shoulder pain feels better. he used an activator on my jaw...that felt really good.......hey i keep forgetting to ask all of you...do ur teeth ever seem to ache from all the pain/pressure?? mine do sometimes......im just so worn out from feeling like this but i refuse to give up...we have each other to talk to, and we understand what we're going thru...prayers with all of u tonite xo
The Following User Says Thank You to buffalonygal For This Useful Post: LoopyLuci (04-26-2012)
Hey Joyce- thanks for your kind words. Having a non understanding family makes this harder to get thru for me. As far as your question about teeth hurting, I did get that when I had the sinusitis going on and afterwards for about a month. Not really anymore. If it persists and your nose blockage persists, maybe u should get double checked at the dr for sinusitis. There's not only bacterial sinusitis, but viral and fungal. I feel constant fatigue ever since this began. Can't get thru the day without wanting to take a nap. Or two. It's strange feeling this worn out. I'm not used to it, or to the headaches almost everyday either. That's why I guess I'm uncertain if this is just an e tube issue, because it's crazy how many other symptoms that I have. I don't know, and neither seem to the dr's. Immhoping for an answer on my labs tomorrow. Will post then.
Thank you for your prayers!! I really appreciate them. I have been doing the same thing and searching for verses in the Bible on healing.I have a list of verses that I keep in my devotional. I am doing the Jesus Calling devotional and really enjoying it.
I am glad you were able to get an adjustment last night. I too have TONS of neck tension. I attribute it to the constant attempt to clear my ears. It is interesting you mention the teeth. My upper teeth do hurt, similar to when I have a sinus infection, but I don't have any infection. I wonder how that relates to ETD? There has got to be a connection.
I would bet that the seeing spots is migraine too. Vestibular migraines can really mess with your e tubes. If you google MAV you can see that is messes with your ears. I am really sorry that you don't have family supporting you through this difficult journey. I can't even imagine trying to do this without the support that I have. I have a moderately severe hearing loss. I will be getting bilateral hearing aids soon. The hearing aids is not a big deal, but the ETD is life changing. Please don't be discouraged by being told that hearing aids is much worse off than this. Yes, being 45 and needing high tech hearing aids is kind of stinky, but it doesn't compare to this.
I had been so hopeful the past two days that I was improving. However, I had a set back last night. I had SCREAMING tinnitus and then my left e tube decided to slam shut. I had been able to do the jaw trick and get it to open some. I have no idea what happened. The tinnitus is already starting to build this morning and it isn't even 9 am. I think I am going to try the ear popper that I bought again today.
I actually bought something called the Otovent. I have not tried it yet. Are any of you ladies familiar with it?
Hi all, went visiting again today. Kids had a great time. Got ANOTHER headache again today. I didnt see any spots fortunately. My bloodwork came back, it was all ok but my blood sugar was a little high. Not sure what could have caused that, since I fasted before the test. All they really told me to do was to watch my sugar intake. I actually dont eat that much period so not sure how that level was so high. I don't know if that has anything to do w my ears though. They are just as irritating as usual today. Full, weird noises when I swallow, u guys know how it goes. I seriously think that I actually get a thump sound on my left side upon swallowing lately. Hope it's nothing awful. Had an appt w my psychiatrist today to try to get her to change my anxiety meds. I've had a lot of trouble with ssri's n wanted to try something else. She only wanted to discuss my ear issue, as we have before. She decided that she didn't want to do anything about my meds. She was irritated that I even suggested that the zoloft she gave me might have caused my headaches and dizziness. She said nope, that's an ENT issue or neurologist issue. Not her problem. So no new meds, though I couldnt tolerate the zoloft. She absolutely refused. So I can't get any relief from the anxiety that this ear problem causes. Nor can I get any relief from the actual ear problem. Awesome. Gotta love dr's.
I may have asked u guys before, but do any of u get burning in your ears at all? Like inside the ear, like a nasty ear infection? I swear I get that feeling almost once a day for a few hours. It seems to mask the other symptoms that I have cuz when it comes on, all I want to do is get out the ice pack. I want to inject ice water into my ear! My ears will even turn red and burn on the outside too! Other people can see it! It's really freaky.
Luci- I have heard of the otovent. It's the balloon thingie right? It's probably worth a try, but maybe for a cheaper solution u could try buying a pack of balloons and blowing them up regularly? I know that balloon blowing always seems to make my ears pop. I just don't know how itd work blowing it up w the nose.
Joyce- a massage sounds nice, maybe it will relax Ur ears. I think it's great that u can have a chiro adjustment as needed asap. I wish I could. My cousins are chiro's, but they're also not very nice, so I see my own. I want to possibly try acupuncture, as some ppl swear by it, but it's godawful expensive. On the upside, one of my other cousins has given my name as an intention to pray for at Mass. She told me I now have a whole church full of ppl praying for me! Made me feel good, hopefully all those prayers plus mine will bring about an answer of some sort. I hope all of our prayers will bring us answers before long.
Have to try not to keep thinking about injecting ice water into my ears, I can't stop imagining how good that might feel right now if it wouldn't actually cause any damage! Darn burning feeling!! Arrgh! I wouldn't be surprised if they started smoking. I'm totally serious. Let me know if ur ears get this burning too guys. It's really making me crazy lately.
Hi ladies!!!! I havent heard of the otovent but leme know how it works..might just go buy some balloons and try blowing them up...been reading alot of online scriptures today and enjoy Joyce meyer website--very positive and encouraging...we took a drive to the country tonite (to get some beef from a local farmer) going up and down the hilly roads made my ears feel worse, then they seemed to pop for a brief second...no matter what i do with my jaw i cant get them to pop...have a headache on the left side today..im exhausted...hopefully i can sleep in a bit tomorow...teeth really ache and sometimes when im sitting really still, its almost a pulsating feeling...just took some natural muscle relaxants...hoping they help...Jenn i dont get the burning inside the ear altho sometimes i geta red hot outer ear..it will get beet red and feel really hot..it lasts a few minutes...i get thumping crackly sounds when i swallow..my ears itch and get the crawly sensation quite a bit...im so sorry your dr wouldnt switch up your meds....its like we KNOW how our body is reacting to a med..why wont these drs listen to us?? Have u thought of possibly getting a 2ns opinion? maybe find a dr that will listen to how ur feeling?? hoping to get another adjustment tomorrow...i just wish i could learn to relax my body..my shoulders are alwaysssss tense...i cant wait for my massage.........wish i could go more often than a couple times a year!!!! well please know that im praying for all of u and i do every day..
The Following User Says Thank You to buffalonygal For This Useful Post: LoopyLuci (04-27-2012)
I am really struggling with intense pressure and a blocked left ear badly today. Is there any trick that has worked for you all to get your ear to pop, even briefly. My whole ETD journey started when I did the pinch your nose and blow trick. That was almost two months ago. I own the ear popper, and the otovent. The ear popper doesn't work for me and I can't get enough pressure out of my nose to blow the balloon up. I have taken tons of Sudafed, tried Afrin, Flonase, Nasonex and oral steroids. Moist heat is not working either. The tighter the ear is blocked the louder the ringing is. Ringing is 24/7 but builds in volume throughout the day. Any tips would be so appreciated right now!!
The following 2 users give hugs of support to: LoopyLuci buffalonygal (04-28-2012), Jenmomof2 (04-27-2012)
LL, when my ears were first blocked, I could not get them open for 48 days straight. Afrin finally did the trick.
I had some bad blocking last night...pressure would build up, and then I would get the gunshot pop and actually feel better/hear better afterwards. I am better today except for some loud ringing. I'm sorry to hear everyone seems to be suffering with a spike in symptoms right now. I'll keep all of you in my thoughts.
Last edited by moderator2; 04-28-2012 at 05:12 AM.
Luci- I feel your misery because I honestly have zero coping skills to deal w this garbage! I have had some relief from the pressure by massaging the e tube area, just under the ear in the indentation between neck n jaw. I put pressure on this area n gently slide my finger down that area just beneath my jawline. I also do my heating pad for as long as I can stand, right over the yucky ear. I push fluids, especially water. I have a snack, cuz the pain/fullness all day long kinda kills my appetite, so if u haven't eaten in awhile try to eat a little something. The thing that almost always helps me is to lie down quietly, close my eyes for a bit and do a meditation. I'll sometimes focus on my e tubes and imagine my body relieving the inflammation and swelling. I sometimes will say some prayers, imagine myself sitting with God, telling him my worries n asking for help. It really helps to do this. I feel that even listening to the quiet helps in a way. It's hard to do this constantly, but I try to do it every evening, and my husband can tell u, I'm least symptomatic in the evening. I also tell myself that the bad spells always have passed before, and there's no reason to doubt it happening again.
I also am a big advocate of allowing yourself to be miserable if you need to be at that time. I'm not an expert, but I truly feel that ETD or whatever it is that we are suffering from, has been so far a fairly traumatic event in our lives. We have lost our former selves in a way, and that loss causes us grief. I know that I feel definite grief for what I believe I've lost. I think that u should Allie yourself to feel pain, anger, fear, any negative emotions. You have to get it out of you. I have no good coping skills, as I've said. I whine about this a lot. I cry hysterically over it. It might seem dumb, but to me it helps. It let's the negative feelings out so they don't implode from within. So I can defintely tell u if you feel like having a pity party tonite, have one. Get ur comfy pjs on and let it out. Then try to make yourself feel a little better with the tips u get. But let it out. It doesn't make u weak. We are only human. We can't always be perfectly strong. You said you like reading Bible passages/devotions? I pray too, but I've also found comfort in reading quotes about strength and courage. I've even made a list of my favorites that I keep on my phone so I have it with me when I'm struggling. I will post u one now!
Be at Peace," by Saint Francis de Sales
Do not look forward in fear to the changes in life; rather, look to them with full hope that as they arise, God, Whose very own you are, will lead you safely through all things; and when you cannot stand it, God will carry you in His Arms.
Do not fear what may happen tomorrow; the same understanding Father Who cares for you today will take care of you then and every day.
He will either shield you from suffering or will give you unfailing strength to bear it. Be at peace, and put aside all anxious thoughts and imaginations.
The following user gives a hug of support to Jenmomof2: buffalonygal (04-28-2012)
The Following User Says Thank You to Jenmomof2 For This Useful Post: LoopyLuci (04-28-2012)
Luci, how are u feeling today? I was thinking about you last nite and this morning. I woke up with that crawling sensation in my ear. It still hasn't gone. It feels kinda like my ear is/should be bleeding or something on the inside. I want to rip my ears off sometimes. I hope u feel better than last nite. I know that u have Meneires too, I know it's hard when u have one health problem, and then something else comes along and messes up everything even more. It's raining and cold here today and not much to do. My tricks that I use to deal with the times that I just can't distract myself don't seem to be working at all today. Out of all of us here on this thread, I truly feel like I'm the weakest one sometimes. I want so badly for this to go away that I ache. I'd rather not distract myself or learn to live with it. I try to stay positive but it gets difficult. I hope this icky feeling in my ear will calm down soon. I'm getting ready to call the ENT answering service of this keeps up it's very painful today. I'm worried about getting an actual ear infection. Gonna start pushing fluids to see if that helps any.
Hope everyone is doing well today, hopefully no one else has the eat creepy crawlies.
I tried to pm you but for some reason it shows that pm are not allowed? I broke down and used some Afrin last night. I had sat outside to try to get a break from my symptoms and was congested from being in the middle of a sea of pollen.
If the gunshot pop relieved pressure and brought about better hearing I think you are right. It has to be the e tube trying to pressurize . Too bad it couldn't do that with a nice, gentle, quiet little pop. An interesting note.... I tried the ear popper again last night..... several times. Had it on the high setting. Both of my ears made a pop sound at the same time. My right ear which was the side I had closed off immediately felt much worse and blocked. The left ear felt unchanged despite the pop. I didn't try it again. However, today I have been able to get that ear to pop and my hearing does get louder. That has not happened yet. I was really blocked and full when I got up, but after a while it started to get better!! I am not sure what to think at this point, but thankful to be able to have some relief from the pressure.
Thank you so much for your kind words and thoughts. It was a comfort last night. Today has been better from the pressure stand point. I just have the ear on fire thing going on today with a spike in the tinnitus and hyperacusis. It is better than the pressure feeling though!! The creepy crawling sensation is a tough one. I usually would grab q tips and start going to town, although that is a really bad idea. I am really trying to break that habit as it is obviously not good. Please don't feel like you are weak. I have a long list of medical issues. I have had a brain tumor removed in 2000. Somehow anything to do with my ears seems to be what sends me into a bad place. Medically I have walked through much more serious issues than this, but this has rocked me hard.
I appreciate all of you and being able to share and ask questions!! I hope you ALL are having a good day.
hi Ladies........just read all your posts...Jenn, i have the creepy crawling sensation right now and i wana jam my finger or a qtip down there but i know thats the worst thing i could do...my jaws feel very tense and tingly......my left side being the worst right now.....please dont feel like u are weak..trust me i feel so down and frustrated with all of this, and i just keep praying for strength...for ALL of us..........right now i would swear there is sumthing in my ear...altho i keep thinking that the CT showed nuthing but it sure feels like there is sumthing in there..my teeth arent as achy today just the whole area feels swollen and u know how your arm or leg feels when it "falls alseep"..that pins/needles feeling? that is how my jaw/ear feels...Luci, you have been thru alot..wow i admire your strength and courage....all of u are in my prayers..i just pray we get relief from this....i know stress plays a major role in all of this.........today my son and his finace came over and wanted to make bbq chicken....so they were in the kitchen cooking up a storm and i got chitchatting with them..and for a few moments that i wasnt obsessing over my ears and how i feel, i felt pretty good but the minute i started thinking about it..i felt crappy......i've been reading alot of online scriptures on strength and healing..that helps alot.....i talk to God and try not to question why these things happen, but when i do find myself doing that im reminded that trials in life build our faith and character...so we must be building alot of faith girls!! So the afrin helped Luci?? i have a bottle of it, and i wil use it when i fly next saturday.....yearrrrs ago i overused nasal sprays and ended up with rebound congestion...so im leary to use it again, but i will use it only as directed......ok i will end with something that hopefully makes u girls smile...FX replays their movies alot..and guess whats on again?? I ROBOT..lol........yes just watched will smith shirtless again.......a brief cure-all.......:-)) i pray u all have a good nite........o and almost forgot...jenn, i googled crawling sensation in the ear, and alot of things said its a sensory thing (nerves) and it eventually goes away......hopfully sooner than later for us !
Back to being solid blocked again. UGH !!! Intense pressure and sharp pain. Mountain top to valley lows.
I know that Dr. Poe and Dr. Weeks are both doing the balloon dilation procedure. I am wondering if you are familiar with a procedure called Eustachian tubolplasty? It looks like it is being done in Boston. It is also being done in Memphis at the Shea clinic. I am about 7 hours from Memphis and am already an established patient from previous years. My appointment with Dr. Poe seems years away at this point. I am thinking I could be seen at Shea clinic sooner than in Boston. The procedure looks more invasive than the balloon dilation. Have you done research on this option? This kind of intense pressure is nearly unbearable. I had a couple of pops today and could hear soooooooo much better. Now I am not able to hear much at all.
Luci, I have heard of the e tuboplasty. I read about it a few times online. It could be worth a try to go closer to home. I think that it's at least one option to consider especially when u feel so icky. I sometimes just wish I could get an appt with one of these places tomorrow n just get this fixed! I don't even know if etd is really what I have- that's the funny part. It seems like what I have, but I've also been told other things such as allergies and tmj. I wish I could get a definitive answer. It looks like I will need to consider trying to get an appt to see Dr Poe. I really want it to go away without such drastic measures, but maybe this us just how it's meant to be. I try to believe that like Joyce said, everything that happens to us builds our strength, courage, and confidence. I feel like my husband would honestly be crying like a baby if he had to endure this. He only thinks he wouldn't! I find strength in my kids because they need me, and even though im not the way I used to be, they don't care. They just want and need their mom. Also, the meditation/visualizations help me lots. Very relaxing even if they don't fix everything.
I got hit with the Google monster today, and have thoroughly horrified myself. I'm a little concerned now about the possibility of an inner ear problem. I only say this because I cannot clear the ear fullness by popping them. I do feel the pop, so I'm pretty sure that they've popped. I have no other symptoms as of yet though, no dizziness or tinnitus no hearing loss as far as the tests say. So maybe I need to just stay off google.
Hoping for a good day for all of us tomorrow. I need to get some housework done. Oh and I forgot to ask- anyone have ANY idea why my blood test came back with high sugar levels even after fasting?? The nurse who called with the results was confused when I told her I had been fasting for the test- she thought I'd been eating/drinking! I'm sure it's no big deal, but I'm a little concerned because I dont tend to binge on sugary stuff/carbs.
Have a good night!
Luci, do u keep track of what you eat that might contribute to your days feeling worse? I have noticed my 2 biggest cuprets are salt and dairy.......hard to avoid...but i find it makes my symptoms worse........woke up this morning my left is very plugged, i keep swallowing and it feels like it wants to pop but doesnt ughhhhhhghh....i feel ur frustration girls but keep the faith.....I have John Hagee on tv right now..listening to his faith message..very encouraging.......Jenn i know what u mean about googling and reading tooo much.....every time im tempted to search all day long, i force myself not to, and google scriptures on healing instead........yes i do still google ear issues but try not to every day.....it can make u crazy....as far as your blood sugars go, what was your number? I work in an internal med office and i know if its slightly over 100, they just tell you to monitor your diet, carbs, sugars etc.....ask them if you can repeat it in about 6 wks and see where your #'s at...........sugar can be very easliy controlled with diet modification and medications ( i know you dont wana take any more meds!) but usualy can be brought under control with diet modification....and stress reduction!!!!! and avoid snacking after 6pm..........thats what the drs i work for advise our pts........have them reck your levels in a few wks! and dont stress!!!!!!!!!! xoxo have a good day girls!
Ok, so I am guilty of doing the same thing too. Google can be a wonderful tool, or it can send us into a panic. I am guilty of my drs throwing out a diagnosis at me and going home and reading too much about it. Even through brain tumor, and Meniere's I have never spent this much time doing research.
I need to start keeping a journal of each day of how I have felt. The only thing I can figure out is I spent a long time outside. We are still in heavy pollen here in Knoxville. I do have allergies and have done shots for many years. I am going to try to stay in today and see if that helps. I am not eating much right now, but I am going to start writing down what I eat and see if there are some connections. Cutting back on salt is not too difficult, but dairy is a bit harder.
Since I have been sick I have not been able to go to church. The hyperacusis hits me so hard that I have dry heaves. Our church has video of the sermons, so I am able to watch and keep up to date online.