HI Ladies!!!!! Well today hasnt been much better than yesterday..still crackling alot..mainly in my right ear..Luci, i dont notice my etubes clearing at all when it crackles...i wish they would......usually my left ear is worse, but that stinkin ear is just blocked 24/7...i've just gotten used to hearing less from it...i can only imagine how loud everything will sound when it finally decides to unplug!!!!!! I've never had allergy testing, i hate to spend the $$ on it, when i read more often than not, that it doesnt really help alot.....trying to keep positive and not get discouraged...Luci i do work for a dr, but he has NO insight whatsoever..he deals mainly with elderly patients. I havent had much snapping today in either ear...like u said, its not painful but VERY annoying..yes we should be thankful its not happening alot! Well, i am continuing to pray for all of you on here!
The Following 2 Users Say Thank You to buffalonygal For This Useful Post: Jenmomof2 (05-16-2012), jenni9033 (05-15-2012)
Hi ladies! Quick post on the fly as I'm going to dinner with friends. My ear was much improved today but tried to relapse on the drive into town (I live in a semi-rural area, beautiful but full of allergy-inducing trees, weeds, and hayfields, ugh!). I am finding that I can valsalva the tube back open, but if I swallow "wrong" or use that muscle in my palate that usually opens my tubes, this ear wants to revert right back to closed/blocked. So now I am paranoid. Also, I've started taking my allergy med again at night and the two nasal sprays twice a day to try to keep my ear from having a reaction.
I had my second acupuncture appt this afternoon. She is treating ONLY my ears because honestly, I don't suffer from any of my other health issues enough to bother. The other stuff doesn't begin to come close to touching the nightmare of ETD, as you all know so well.
My right ear infection/fluid is calming down, but noticed some swishy sounds in the left ear yest., and am praying it's not the beginning of something in that ear.
Joyce, did u say antibiotic drops gave u the fungal infection? Because that's what I've been prescribed for the infection: drops that go in the ear and seep through the PE tube right into my middle ear. Sometimes I wonder if I infected myself because I have dropped/lost earplugs a couple times recently while showering, and the earplugs don't work that great to protect the ears from moisture even when used properly.
Oh. My. God. I want to go Van Gogh on my ears today! I took my kids to the zoo today. Good that they had fun. Bad that I couldn't really enjoy it much cuz of these stinking ears! Then we went over to this fishing lake by our house n I let the kids dip their toes in n splash a bit, it's not a swimming lake, but they liked it. We had a nice time, but I'll be honest, the whole time I kept thinking it could be better without the ear stuff. I just want this gone! My good news is that my appt w/uic got moved up to June 6th and they will still call me again if I can get in sooner. So I'm really happy about that.
Some more symptoms to discuss with u girls. I've been having increasing episodes of migraines and the feeling that my head is underwater. I pop my ears, and I think ( THINK) I can feel the e tubes opening, but no relief from this underwater feeling. I can literally have no pain or discernible ear fullness, but feel like my head is underwater. I have no idea what this is. I'm worried that I may have an inner ear problem. I'm thankful that I am seeing an ENT/otologist next month, so hopefully I can get this sorted out. So, anyone have the 'head underwater' feeling? I swear nothing budges it! I took allergy meds today n everything, did the saline rinse, used flonase, used afrin, took ibuprofen- I still feel underwater, yet can pop (i think) my ears and feel like I've done nothing! The migraines are definitely migraines I'd say, and they cause visual disturbances as well, like spots before the eyes. I then get so nauseous I feel as though I will throw up. My ears feel even more yucky during the migraine. I can't figure this out! I don't have vertigo, and this is the only way I find migraine and ear symptoms related- vestibular migraine. Plus I had the cold first, not the migraine.
Joyce, stop sticking stuff in your ear! Stop it! Have you noticed any congestion at all? Try the saline rinse when u have the stuffiness, even if there's no congestion. It sometimes helps my pressure. I just use arm n hammer saline spray, it's in an aerosol can n u can just hold the button down for a continuous spray that will rinse ur nasal passages out. If there any allergens/ microbials stuck up there, it'll rinse them out.
Luci, thanks for bumping up my new thread. I wanted to try to hear from as many ppl as we can so many we can get some more ideas going here. I'm glad that my quote yesterday made u smile. It makes me smile too! I wanted to ask u if u have ever seen an otologist, since u have the Meneires and all. I'm wondering what to expect from an ear specialist. I'm a bit nervous.
I have found, ladies, that a heating pad over the face/ears can work wonders when the pressure is too much. It keep constant heat to the area, so unless ur trying to loosen congestion, maybe try it. I literally sometimes feel like a balloon is deflating in my head when I do it, and I've never burned myself, it really doesn't get hot enough for that.
I'll let check in again tomorrow guys.
"Allow yourself a moment of grief when life's misfortunes visit you. However, do not spend your days building a monument in honor of them."
HI girls, just posted on jenns new thread! good idea to start a new thread...Jenn i know im a qtip-aholic..but i gota stop!!!!! Jenni, i got the fungal inf becuz my dr kept me on 3 rounds of eardrops...if u use them just as directed for 7-10 days u will be fine...Its that he kept me on them becuz my ear never got better when in reality, the drops were feeding the fungus....but one round, as directed, and you will b fine.....!!!!!!!!! I will ck in later!
It's a windy, chilly day here in Chicagoland. I spent some time at the park with my girls today, and stopped by our lake. My younger daughter was throwing stones in and had taken off her shoes and by accident threw a stone and her shoe in! I HATE lake water but it was drifting fast so I had to run in after it and pray I didn't hit the dropoff and actually go under! That was my adventure for the day.
Joyce, I seriously cannot believe ur dr gave u that many rounds of ear drops and thought nothing would happen especially in the ear canal. People get fungal infections there all the time, its fairly common. At least we know better now...
Jenni, nice to hear from u, hope ur dinner with friends was fun. Your mothers day sounded wonderful. Hope your ear isn't giving you too much trouble today.
Luci, how's everything going? Any let ups of that stupid horrible ear pressure? Not really for me.
Guys I had something I hope and pray is wonderful happen to me today, and am desperately worried that it will somehow get messed up. I wanted to ask you all for some extra prayers for me for the next few weeks. I will be doing my St. Jude novena again as well. I will definitely fill u guys in on it when the time is right so that I do not jinx it( I'm a bit superstitious). I really do appreciate any extra positive thoughts and prayers for me. As always, I will keep you all in my thoughts and prayers.
"Miracles happen to those who believe in them."
"I dare you to move, dare you to move- dare you to lift yourself up off the floor. I dare you to move, dare you to move like today never happened, today never happened before"
- Switchfoot from their song "Dare you to move" a song dear to my heart right now because it encourages us to rise above life's challenges that knock us down.
Hi ladies! I'll be posting on Jenn's new thread when I get more than five minutes time to myself, ugh! Just wanted to quickly update...
The dinner last night was fun, but I had trouble hearing in the loud atmosphere AND my voice was bothering me from time to time (sounding weird/hollow/muffled)...I am wondering if sometimes I just tune back into the way things sound different with bilateral pe tubes, if I RE-notice what my mind has learned to mostly tune out? My friends were nice enough to ask about the ear stuff, but I am too scared people will think I'm one of those "always sick" people to really open up about it, so I stammered a few sentences and moved the conversation onto other stuff. It's hard when people ask the simple question, "How are you?" because I really can't honestly say I'm doing great, kwim? That would be lying! So I usually say, "Hanging in there" or something along those lines.
The second thing is...today I had a check-up type appointment with my TMJD doctor. He did some cranio-sacral therapy on me that was very relaxing. Like chiro, but just your head, and very gentle and no loud cracks or pops like you get with chiro. Anyhow, he probably worked on me for about 20 minutes. And when I sat up, my right ear, which had blocked to about 50% due to the drive, popped open! I wanted to say thanks, but was afraid to jinx it by even mentioning it, lol. But the doctor had kind of this twinkle in his eyes, as though he sensed the change in my condition. Interesting! It's been quite a bit better today...don't know if it's the cranio-sacral stuff, or just the ear infection starting to clear. I know there's still liquid in there because I can valsalva and hear the wet sputter in that ear. But maybe I'm turning the corner again. Meanwhile I'm trying not to pop or mess with that ear as I don't want to re-pressurize it. It's so touch-and-go.
We have bad weather moving in by this upcoming Monday, so we'll see how I handle it. Low pressure systems usually equal tinnitus and clogging. :-/
Jenn, prayers and fingers crossed for you. Don't tell us until you're ready to, but I can't wait to hear, all the same. You're doing a great job with your kids, still getting them out to enjoy the great outdoors, when I know you really aren't feeling up to it. I know the feeling...I started crying the other night because it occurred to me (not for the first time) that my 3-year-old son doesn't remember when I was ever healthy. All he knows is a mom with bum ears. I'm sure my 5-year-old doesn't remember, either. But at least they do know and can sense how much we love them, despite not feeling well. I really believe that.
HI Girls!!!!! Glad to read your message jenni, and that you are improving!! I always think, well one of these days we are all gona post we feel "normal" again!!
My ears feel a bit better today...maybe its cuz the humidity isnt as high....Luci & Jenn, I hope you're doing OK today as well.......its great having such a good support system here!!! Prayers for u all ! xo
Last edited by moderator2; 05-17-2012 at 07:39 PM.
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Jenni, you may have just given us all something new to look into. How amazing that your ear popped open after being worked on!!! Sign me up for that program please!! : )
Love the story of the shoe floating down the lake. You totally did the mommy thing by going in to retrieve that shoe. I have to mirror what Jenni said about your willingness to carry on with your " littles" while being sick. Still love the quotes, and I love Switchfoot. If you listen to contemporary Christian music check out the song by Kari Jobe called Healer. It is great.
Today was my visit with my local ENT. Next stop for me is a CT scan. My MRI shows disease of the Sphenoid Sinus. One of our initial concerns of my MRI reports was that there was a tumor in the Sphenoid due to my Neurofibromatosis. My NF is not the kind that causes skin tumors, but rather goes after the nerves of the brain/ spinal cord. We see the local neurologist in the morning to discuss the rest of the findings of my MRI. My neck/ spine is where the most serious issues seem to be at. I am progressing in my disease. We have not heard back from my Neurosurgeon in Boston yet.
Of course I have googled and am not really liking what I am reading on this. My ENT is proposing balloon sinus surgery if the CT scan is consistent with the MRI. He said it is possible that the ETD is caused by the sphenoid. However, my worst ear is my left and it is my right side sphenoid that is affected. He said he can't make any guarantees and there there is a small chance that I could be made worse.
So, since I know we have all done a ton of research on this what comes to your minds as you read this? I would sure appreciate any thoughts that you guys might have. Between all of us there is no telling how much research we have done!!
I appreciate your prayers and am praying for all of you. Again, feeling thankful for this support system.
Last edited by moderator2; 05-17-2012 at 07:37 PM.
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Luci- please consider getting a 2nd opinion on the sinus surgery. I have seen 4 ENTs with the same sinus ct scan. 3 told me no need for surgery. Only 1 ( the 1st one no less) said surgery. Be very careful with ENTs telling you that u need surgery. They'll go play all willy nilly with their scalpel and who knows what could happen. I've researched this a lot because this is the SAME place that the one guy said I had sinus disease. Plus they cannot do the balloon procedure with this sinus, it has to be traditional sinus surgery. I believe one of the ladies Jenni spoke with awhile ago, DLT48, said sinus surgery caused her etd. Then her dr had to fix her sinusitis and her etd. In case ur wondering, the other 3 ENTs told me that chronic allergies (allergic rhinitis) can show up in that sinus and it isn't necessarily something sinus surgery can fix. Again, this is what the dr's I saw told me. If u research chronic sinusitis and chronic allergic rhinitis, u can see that these can cause etd. I don't think it matters what side of your sinuses is worse, cuz like you (crazy!) my right side is worse but my etd is worst on the left side. I can't really even tell if I have it on the right side! Another interesting thing for u to look into is the connection between allergies and inner ear disorders like your Meneires. Look up allergies and inner ear and u can find a wealth of info on this topic. I'm not saying that's the cause of your Meneires, but it can't hurt to look into it.
Jenni, here's my own take on your not wanting to come off as sickly to ur friends: don't worry about it. I think if they really are your friends, they should be able to listen to you vent once in awhile, as I'm sure u would do for them. If they know more about what's going on, it could work to your advantage because then ur free to feel how u feel at the moment without worrying about them guessing your 'secret'( that u probably feel pretty yucky). Plus it might even build ur support system up even more. I have very little support from anyone thru this, so from my standpoint, if there's even a remote possibility of gaining even more support, I'd be all for it. I do know it's very hard to feel like ur not 'normal' in a group of 'normal' people. I'm not telling you what to do, just thinking it'd be nice if u could let the weight of this etd crap off your chest to them. It's definitely ur call though. And as u were saying about having trouble hearing in loud places- Omg I'm so TIRED of that too! It makes me want to cry! I don't have pe tubes either, so it's gotta be something, but who even knows what. I have no hearing loss but sometimes I can't hear! It's an like an oxymoron, like jumbo shrimp!
Joyce, I'm so glad ur ears feel pretty good today! I'm gonna try tonfind that page ur talking about. I'm curious. I always feel like I'm such a freak like I'm the only one in any given surroundings tonnage this nonsense going on. It's not much, but it is some comfort to know that it's not only me(or us)! I realized today that I'm forgetting what it was like to be normal. Scary. Maybe it's better if I let that go for now anyway. It's no use looking back n getting super upset. Better to keep moving forward. I'm starting to slowly see that now.
well today, i seriously feel like something is poking my left eardrum.....its the oddest sensation...my right ear isnt feeling to bad today..........Jenn i know u mentioned you get the poking sensation in your ears...and my neck hurts today too......jenn, try to find that page, its brand new but i think you will feel at home there!!!!! Enjoy your day girls, its a gorgeous one here bright sunshine, and low humidity.......I took my dog for a long walk and thanked God for such a gorgeous day.....just wish my left ear didnt feel so icky. Talk to you all soon
Last edited by buffalonygal; 05-17-2012 at 09:23 AM.
Well i want to report that there are alot more ETD sufferers out there..i went to the dentist today to get my teeth cleaned, and i thought i heard the receptionist say to one of the hygenists, "wow i wish my ears would pop" so i tried to evesdrop as best i could (seeing they sounded muffled) and finally i said, did u mention something about plugged ears, and BOTH the hygenist and the receptionist said yes, then proceeded to describe very similar situations as all of us...both suffering for several weeks..when i told them i'd been suffering for several MONTHS they were like Eewwww no, please tell me this stuff cant linger for months, i said unfortunately it can last for months and years.....Both of their dr's blamed their symptoms on allergies which im Sure does play a part in this..never woulda thought so many ppl are affected by this stuff..
I would like to say that I hate my stupid left eustachian tube. It's annoying. Why? Because it won't open n close like a normal stinking tube! I got my medical records to bring w me to my dr appt next month. I read 2 tympanogram results. Both of my tubes have a normal reading, yet when they challenged my left tube to open, it apparently had refused. Now, they did have me do a type of valsalva to open the tube, but my tubes rarely will open easily with valsalva- I usually false yawn to pop them. And if the left middle ear has within normal range of pressure, then the tube has to be opening at some point, right? I'm seriously confused. My right ear pops right away when I yawn, a couple seconds later, I hear my left one pop. Sooooo, if it's not opening, what the heck is that pop that sounds like the right side's pop when the tube is opening? And why is my hearing in both ears muffled in loud crowded places in both ears? I am being told I only have etd in the left ear. I'm starting to get really really confused guys!
Joyce, that's nuts that 2 ppl in your dentists office r dealing with this garbage! It's garbage! And dr's seem to like to blame it all on allergies.... I swear ear care is in medieval times still. We can transplant organs, send a man to the moon, CLONE animals, even crack the human genome- but if u have a blocked up eustachian tube, to heck with you. You will be told to use nasal sprays that cannot physically do enough work to open tube or given harsh oral/intramuscular steroids that can cause a host of other serious side effects to bring down the *possible* inflammation in the tube. Oh, sorry, did none of that work out for you? Well we can definitely poke holes in your ear drums to aerate your middle ear, though it's only like 50/50 that it might work. Or you can just live with it. Argh! I'm sick of these horrible options for ETD! It makes me sick that it's blamed constantly on allergies. What if it's a mechanical problem or a viral problem or anything besides allergies?! I had a COLD in January. Not sick at all before that. Not sure how they're deducing allergies. I'm just venting cuz I'm sick of this.
Just got back from taking my kids to a nature center near our house. They liked it a lot. I had fun too, but my ALLERGIES (lol) were acting up I literally took a 24 hr zyrtec(have been for 4 days now) and like 4 quercetin tablets ( natural antihistamine). Still was sneezing like crazy! My girlies even have had to take baby zyrtec to stop the sneezies the last few days. So who knows maybe it is allergies I give up. I'll check in later.
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The Following User Says Thank You to Jenmomof2 For This Useful Post: Speced tchr (06-03-2012)
hey jenn..i totally agree, with all the advancements in modern medicine, WHY cant they open a stinking ETube?? I do think allergies play a role in all this, but sometimes i think its an easy answer for drs to tell us, ya know? My left side is really bad today..the right side isnt quite so plugged up but this darn left ear, and the poking sensation is relentless today..i've resisted the urge to poke and pry with a qtip tho! Try typing the page as i spelled it on here and see if it comes up OK? leme kno..try to hang in there, gota keep thinking positive thoughts!
Good morning from CAlifornia....I just stumbled on this thread which appears to be going on for a long time.
I, too, am an ETD sufferer and have been for over 20 years !
I am proof tht you can learn to live with it. I am having a bad bout now and on z-pac and med pack to try to feel better.
I read some of your posts and relate to all of your misery.
I am a special ed teacher, mom of 4 and grandparent of 5.....have made a good life, but dealing with these problems has been a huge trial !
It helps to know you're not alone. I've spent years trying to figure out how to remedy this. My problem is ONLY the right ET....
New to this board and just spent an hour reading all these posts start to finish. I feel as though I'm the only person in the world with problems like this. Although my ears don't feel full/blocked, I have sort of this echo (more reverberation) in my right ear after a 4 month bout with ear issues. The humming in the ear has somewhat subsided, no hearing loss, but now when I talk, hear other people talk, listen to the TV or radio...the sound is like amplified in my ear if that makes sense. It's not a distant thing, it occurs right when someone else is saying something. I have been extremely depressed, sad, distraught to name a few about all this. My husband is trying his best to deal with me. I've been to 2 ENTs, one said it was ETD but didn't really give me a cause or anything. Got MRI that was clean. Going on Monday to a neurotologist in Philly to see if he can provide any answers to my newest ailment. I'm so sick and tired of living like this. Not sure I can take much more.