Good morning!! Feeling more rested after a semi-good nites sleep.....like i said in the above post, 1st thing in the morn my ears are full..but there isnt the intense pressure/tingling sensation as i get later thru the day...teeth arent as achy as they were last nite so maybe the cipro is helping if there is indeed a sinus inf.....praying it helps these ears too...Luci, i dont get much tinnitus...rarely if at all, and only in left ear when it does happen. Loud sounds get to me...last nite before i came home and cried, i was at the grocery store, and between ppl taking, the background music and a baby crying i felt like i was in a whirlwind.....it all sort of blends intogether....i feel better this morning and have to put myself in a postive frame of mind......im gona look up msMarieC's posts now..for all of us, this did start with a simple headcold...and ya don wonder if the virus is still playing havoc on our ears?????? I do have faith we will all recover from this..praying sooner than later........jen, please keep me posted on what this new dr youre seeing in a couple of weeks has to say.....i will be anxious to hear his options..i cant remember if i've asked this or not but do you guys get that tingly numb sensation around the outside of the ear, and in the jaw area? I do quite often and cant help but wonder if its the tmj and nerve endings responding to my constant clenching?? I also will get the hot ear..yesterday both my ears were BEET RED and very hot to the touch.......in fact sometimes that warmth spreads over my body......a "hotflash" feeling i guess it would be...and i always find i get those when im stressing badly about how im feeling...anyhow Hoping an praying today is a good day for all of us...........
sorry for so many posts..just keep forgetting to ask you girls does your ear ever feel like there is something actually poking around in there?? i know the CT didnt show anything but it feels not only full, but like something is in there poking the ear canal....could the ETD cause this??? as the day goes on i notice it more..........
Hope ur feeling better by the time that u read this. I know the poking sensation your describing oh so well- I get it too. It's your ear drum retracting. Getting sucked slightly in by the negative pressure in your middle ear. Oh goodness, what will we do guys?! Joyce, I recommend at least trying plain old sudafed when that happens. It might help calm the swelling of your e tubes down enough to let your eardrum get into a more normal position. I've been trying to avoid meds but when I get that poking feeling, I know I need to try to get that darn tube open asap. Ugh. We all did have a virus it seems. What ive read about viruses and the e tubes is that they can damage the lining of your e tubes. Studies have proved this. I doubt the virus is still active, but who knows? Anything is possible. I woke up yesterday with a cold with horrible head pressure that seemed to tone down the ear pressure. Today I have taken sudafed and ibuprofen with no relief in sight! Still can't breathe outta my nose! I've also been doing saline rinses every few hours to try to clear out that mucus. It's a nasty yellow color. My whole body hurts but the head pressure today is sooooooooo unbearable. I feel like someone is blowing up a balloon inside my head! My point is that maybe you're right, maybe there's a resilient virus still stuck in our bodies causing this nightmare. Maybe load up on the olive leaf? It's supposed to be antiviral.
As far as the dr I'm seeing next week, I hope that they will give me some kind of answers. Otherwise I'm going to do whatever it takes to see Dr Poe or Dr Weeks. I read dlt48's posts n Dr Weeks in san Diego got rid of her chronic sinusitis and her etd. I called his office today actually to find out about his waiting list. It's only 4 wks out! I will do whatever it takes. As far as the dr out here, he's an otologist/neurotologist. The group is called Chicago Ear Institute. I don't even know what procedures they may have besides tubes to help this. I only talked to their receptionist who was almost positive that they had procedures other than tubes. I hope that she's right. I actually emailed them today to inquire about. Hopefully they will be able to let me know soon.
Im trying to hopefully get rid of this nasty cold or whatever it us that I have. I'm worried I have another sinus infection. I don't really want to go to the dr again...let me know how u are.
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I am so sorry that you both are having such a rough time. Joyce, I don't ever have the poking feeling. I agree that maybe TMJ might be a possibility. The hot ear thing I def. get too. That is such a weird thing and it burns like crazy. I sure hope that the Cipro kicks in and eases some of the symptoms.
I am really anxious to hear about your upcoming dr appointment. I had called Dr. Weeks office too and was quite pleased to learn that his wait time was quite short compared to dr poe. If there are other drs who are doing this i am i very interested in learning who they are. I sure am sorry that on top of this you have gotten a nasty cold. That has to be miserable!! You mentioned that you are in retail at VS. I have worked in retail for quite a few years, but am not working at this time. I worked for Lucky Brand Jeans. I joked that I worked for the discount so I could buy clothes.
Joyce you mentioned in an earlier post about the possibility of hormones playing a role in this. I am def. at the age that could be a issue for me. I plan on having mine checked to see what might be going on.
You mentioned that your dr used a ear popper on you a few years back. That would be the same thing that I bought . The have a clinical version and a home version. I wonder if you might get relief from being able to use one of those on a daily basis?
I think that addressing the viral component in this is something that I really want to go after. What is the olive leaf supplement that you have mentioned?
I am praying for both of you ladies!!
Joyce, I tried to do the pm like you had said, but the message that I got said that the moderator had turned off pms.
Small baby step, but one I am excited about. It is a lil after 6 my time and for the first time in nearly 8 weeks my tinnitus is NOT super loud. I am really thankful. I was able to actually eat some crunchy food over the last couple of days. Normally it is not worth it because the sound is just too loud when my e tubes are blocked. It has been a while, but I am actually hungry. The only new med I am on in Serc. This is just day two, and I would think that is too soon to have any affect, but I am wondering if maybe that is the connection? Hoping that you ladies had a good day!!
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HI Jen & Luci.....SO GLAD TO HEAR THE GOOD NEWS LUCI!! anything, no matter how tiny..is progress! YAY!!!!!! Well the cipro has seemed to help the sinus pressure but not the ear pressure......when i first woke it wasnt too bad but as the day goes on the worse the itchy crawly sensation gets & also the tightening/tingling feeling..thanks for the info Jen about why i feel that way..it makes sense..i just pray this goes away for all of us..it truly has been a nightmare! i have a bad headache today too...Jen, i'd think about a round of antibiotics if you continue to feel like u do..u may have a sinus inf in addition to all the other stuff going on! Funny thing is, i dont blow much outa my nose but i have HORRIBLE post nasal drip.......gaggg! Hope u feel better soon! Luci, i do think hormones play a role in all this stuff too.....i get the hotflashes bad and notice the throbbing in my head/face when i get them.....not fun..i hate it.....had a talk with God earlier and asked him to please lighten all our burdens...I prolly wont b on here much thru out the weekend..my friend is coming to visit me from tx...and im looking forward to it just hoping i feel good enuf to entertain!!!! You guys are in my prayers every day...take care!!!!!!!!!!! ttys!!
Luci- Happy to hear you're doing better with your tinnitus! Like Joyce said, any improvement is good to hear. What is the purpose of your new medication? Is it for your Meneires? I can understand the lack of appetite. I have days that I feel so miserable I don't want to touch a thing. Right now I feel like I dont want to eat much cuz of this stupid cold or whatever it is. I had to force myself today so that my blood sugar doesn't start acting crazy. Dont want to pass out!
Joyce- You have absolutely no idea how much of a comfort you are to me! You rarely let this stuff hold you back. I aspire to be that way though I tend to fail miserably. I need to try harder. Thanks for letting God know that we'd like to have a little lighter of a burden to bear. I ask for that for us constantly. I have been having a crisis of faith lately because I just want answers for us and we don't seem to have gotten many. Till Luci had a success with her tinnitus that is. Your support is truly a gift, and it's appreciated even more because I know that you're suffering too.
Well guys I've been trying to ignore my misery with this cold or whatever it is all day long but it's really starting to get to me. I'm getting that balloon blown up in your head feeling again tonight. Pain in the bones of my skull! My nose has also been squeaking when I breathe! Disgusting. Getting worried that I might have another sinus infection on my hands. Really don't want to see the dr again for this cuz I hate taking antibiotics. I feel like if I could just pop my head like a balloon I'd feel instant relief. I wish I was feeling a bit better. I'm starting to worry that this is something worse than just etd again. My google finger is itching...
Hope you guys still feel ok.
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thanks for your message Jen cuz right now my left ear is so tight and plugged it literally feels like my face is being squeezed from the inside.....im trying so hard to keep the faith...i keep quoting the scripture, God has not given me a spirit of fear, but of love, and of power and a sound mind..i try to replace my fear with faith and its hard especially feeling the way i do now.....trying not to fear flying on saturday..picking my friend tomorrow nite at the airport then we fly to NYC for the weekend...please pray that all goes well..i just get the feeling that someday we are just gona swallow and feel that blessed relief of a popped ear.......i keep thinking how great that will feel......mine is definitly worse as the day goes on...i know my stress doesnt help..i try NOT to think about how i feel..but its tough...........Jen if you dont feel better in a couple of days, u may have to get an antibiotic..i will say its helped the pressure in my sinus and the teeth ache - but as of yet hasnt done a thing for the ears..:-( I'm so glad to have found u girls on here, not that im glad that ur going thru this junk, but glad we have a good support system for one another...prayers being said for u ... xo
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Please know that I will be covering you in prayer as you fly on Saturday!! Praying you to have a wonderful weekend that will hopefully be a blessing to you!! One of my favorite blogs online is by Ann Voskamp. If you google her you will find it. Very encouraging.
I wonder too if you have a sinus infection. I would def call before the weekend if you stay feeling even yuckier than normal. It is so hard to stay well when you have little ones. I admire your strength at being able to keep up with your babies while dealing with this.
I have 3 kiddos. 24, 20 and 9. Yes, that is correct and not a typo. We raised the first two and then adopted a little girl that we call our " Haitian Sensation". She is such a joy to our family. She has been home with us for two years now.
Hope you ladies rest well tonight!! It has been such a pleasure to get to know you!!
Thanks for the support guys! I know u guys are probably right about the stupid cold possibly turning into a sinus infection. Started getting the face pains lately. Ugh!!!!!!!!!! Antibiotics actually seemed to make my ear feel worse when I had them so I'm trying to avoid them. Plus I tend to get what my husband likes to call a 'yeastie' (gross). Then that flares my bladder problem! It's a cycle I'd like to avoid if I can. Olive leaf extract and vitamin c are my friends right now.
Luci, I know u had asked me about olive leaf extract. I keep forgetting to answer. It's a natural antibacterial, viral, and fungal agent. You can buy it at your local vitamin shop. Look it up online it's been proven effective. I started taking it cuz I suspected a lingering viral or possible fungal infection to be causing my issues. Then it seemed to make me feel a bit worse, so I stopped. Then I read that it could possibly be a die off reaction. So i restarted it. Have been really pushing it the past couple of days. Hopefully it'll kick this thing I have before it gets worse. There's no harm in trying it. Give it a try maybe and see how u feel. If anything maybe it'll just make ur body feel better as a whole.
Joyce- Please know that my prayers for your safe journey are with u this weekend as well. I think you will be fine. My left ear has been kinda like yours today. My hand was twitching by the screwdriver we have in the kitchen. I was thinking if I could just pop it like a balloon, it'd stop. I've threatened that eat with various sharp objects over the last few months. Maybe it'll scare it straight one day.
I confess I've been researching etd a bit today n was shocked to see how many people are suffering. Someone needs to do something besides like 3 dr's in the country. Think of how much money they'd make! This is a miserable problem for many, at least we can take strange comfort in that. This evening I noticed some sharp pains in my left e tube. It was literally right in there. Felt kinda muscular. Maybe there's something going on in there as far as healing? Lets hope. I also keep forgetting to tell u guys that I have the exact opposite of your severity of symptoms. I'm worse during the day, better at night. By the time I go to bed, I usually feel almost normal. Weird. I always look forward to the evening cuz I know I'll start getting a little relief. That's when I usually can really get up n get things done.
I'm getting super sleepy right now most likely due to the stupid virus I have. Gotta be at work early too tomorrow. I'll talk to u guys soon.
HI Girls..thought id check in before i get ready for work...Jen, i too am taking the olive leaf...i've read alot of positive stuff about it..taking 4 a day...i take alot of supplements lately praying they help! You both have young ones to care for..both my kids are grown and moved out of the house, but like ive mentioned in earlier posts i have a 2 1/2 yr old grandbaby that keeps me active!!! Sometimes i just dont feel good enuf to have her over and i hate that..they grow toooo fast to miss out on these fun times..so lately no matter how i feel i spend time with her and enjoy her and her nonstop energy!!! Now i got up about 6am (my time) and dont feel NEARLY as bad as i did last nite at 6pm!! I always feel better laying down too..but not on my back..on my side..seem to get alot of pressure when i lay on my back! Thanks for your prayers girls...i was ready to back out on the weekend getaway becuz i was afraid to fly, but i refuse to let this ruin my life more that it already has....im gona do my best to enjoy my weekend with a dear friend who i see only every few years!!Keep me updated and i will check in when i can and keep u posted on how the flight was!!!!!!!!!! Hugs to u both!
O and Jen, I get those "muscular" spasm feelings alot in my ear/jaw area...i do think our muscles are in spasm and that is why we feel like we do and i will get facial twitches too........thats why i try SO hard to relax my face and body and have to do it all the time cuz im always so tense........I keep forgetting to tell u both too, on one of the MANY websites i googled a while back, (i actually think this one was from the UK) a Dr said be encouraged when you hear cracking noises becuz that means the etube is trying to function normally and that USUALLY signals that it is on the road to recovery altho he did say it can take a LONG time....so its already been several months....praying every noise we hear and every crawly sensation we feel is our etube getting back to normal.........i know we cant believe everythng we read on line but i thought this was worth sharing..and Luci i will look that blog up!!!!!!!! thanks for sharing....Joyce Meyer is great too i love reading her daily devotions online!!!!!!!
Last edited by buffalonygal; 05-03-2012 at 03:52 AM.
Hi girls, sorry for being out of touch. My work week can be hectic as I run a business, trying to cram a 40+ hour work week into 3 childcare days a week. Yikes. I did get to pick up my new TMD night splint! I haven't had the chance to put it to the test yet at night, but I wore it a bit in the car. It fits over my bottom teeth like a rigid tooth whitening tray and is specially built to try to ease my jaw back into its most relaxed position (which they determined by doing CT-scans and the TENS treatment). It's MUCH different than the one that I had made through KP (<--name of big HMO, sure you can figure it out, lol). And next week, my daytime version will be ready. It's tiny and you can wear it out and about without anyone noticing.
I'm really noticing a BIG connection between the weather patterns here and my symptoms spiking. A new storm system came in 2-3 days back, and as the barometer was dropping, my ears went crazy. Plugging, lots of those explosive gunshot pops, and tinnitus off the charts. My tinnitus sounds like Darth Vader and his light saber are fighting within my right ear. Ugh! I relented and took a klonapin one night, and the next night, I alternated that with a flexeril. Both of these meds seem to make the tinnitus die down and also help unblock my ears when they are acting up. They probably just make me relax to the point where my muscles are no longer in spasm. I'm not sure...but I'm very cautious and avoid taking the same med two times in a row since I don't want to become dependent. I try to only take them when I'm at my wit's end. Not to mention they make me sleepy.
Joyce, I'm sending out positive vibes for your flight. I flew 2X when my ETD was at its height, and I don't feel like it worsened it. I did the whole ear planes, sudafed, afrin routine. Now that I have pe tubes, I don't have to worry so much about barotrauma. I do feel like taking that flight back in Dec 2010 is what caused my ETD to become a daily problem. And...I had a cold on that flight! But to tell the truth, there is some evidence that I already had transitory ETD because I had a history of ear infections as an adult. Most middle ear infections can be linked to a failure of the e-tube to function properly, leading fluid to be drawn into the ear and setting you up for infection. But since antibiotics always cured my ear infections quickly, and my ears never remained plugged after that, I never was diagnosed with ETD. I had never even heard of ETD until I took that flight and screwed up my ears and got a double ear infection...I couldn't believe there wasn't still fluid in my ears when the doctor first told me the infection had healed and that I now had ETD!
Little did I know ETD would stretch all the way from Dec 18th 2010 to now...
I did read a study about rat mucosa remaining dysfunctional 6 months after they had an ear infection. But I don't remember the study giving any idea of when (if?) the rat's ears ever healed?
Today I've been inside all day, and not suffering so badly. No gunshot pops, tinnitus is barely audible. When my symptoms come back, it makes me frantic to understand what I'm doing wrong or what I'm being exposed to (allergens?) that is prolonging this problem.
On a better note, I haven't had much myoclonus lately (the awful ear twitching in response to sound). That is a relief...one blessing to count.
I think it was Luci that asked if we feel like sound makes our ears worse? I went on a tinnitus or hyperacusis board asking the same thing, because I feel like sometimes the sounds of my kids makes my ears start to block. And definitely certain noises cause my ears to start ringing more loudly. Anyhow, I never got any definitive answers as to why this would be. I have started to think it's because I become stressed when my kids are acting up, and that causes me to unconsciously start clenching/flexing muscles in my face and ears.
Have any of you ever heard of Tonic Tensor Tympani Syndrome? I meant to ask Dr. Poe about this, because so many of my symptoms mirror this health issue that it's eerie.
To answer another question, I have not heard of any other docs doing balloon dilation, and I do know that Dr. Poe won't do it unless he feels you have a structural blockage of the e-tube. That's why I'm not a candidate -- my e-tubes do intermittently block, but it's overlying structures in spasm that he believes is causing this, not a functional problem with my tubes or the tubal openings. So anyhow, it is good to try, if possible, to rule out TMJD, allergies, etc. before visiting Poe. I had made my appointment last October, and for me it was worth the expense just to know if a) I was a candidate for the surgery or b) if I wasn't, then what should I do. I guess I will just keep on the allergy-shot and TMJD treatment path, and hope that it will do the trick over time.
Thanks for the info about Dr Poe, Jenni. I definitely have been trying to rule out other causes for this etd issue. Doing allergy drops (similar to shots), did get checked out for tmjd. Honestly I think that the virus I had is what caused the etd. I'm like u, I honestly couldn't believe it when they told me I had no fluid in my ear. I had a ct scan done of the head, sinuses, and both ear canals a couple months ago which indicated sinusitis to my dr. He suggested that surgery might be helpful, but told me not to expect my ears to get much better, then offered allergy testing/immunotherapy. I don't believe that they told me that I have any structural issue besides a deviated septum. I mentioned other dr's because I read about dr weeks in san Diego doing the eustachian tube dilation, and Luci told us that the Shea ear clinic in Tennessee is doing eustachian tuboplasty, a slightly different procedure. I have not gotten relief yet from even placing a tube in my ear, so as u can imagine, I'm getting a bit desperate. I recently had yet another pressure test at my ENTs office which showed as usual, no change in the persistent negative MEP in my left ear. Basically I was told to just live with it. I came down with another sinus problem just 2 days ago, which has made this go from pretty yucky to pretty unbearable. Sudafed, ibuprofen, allegra, nothing has touched the pain which isn't even much in my sinuses, but in my head and ears. The pressure built up so severely today that I broke down and visited my PCP because the ENT only wants to do sinus surgery. My PCP promptly put me on more prednisone. Didnt know what else to do I guess. I will definitely be trying to stick it out for a bit longer, but I'm feeling very ready to talk to someone who can give me some real answers besides to just live with it.
I hope you are doing well today Luci and Joyce. Im getting concerned about taking all these steroids, but it seems to be the only way I can get any relief when my sinuses go crazy. I hope this flare up will go away before it messes me up even more. I'm experiencing burning in my ear and nose right now, but I can't start the steroid pack until tomorrow. My PCP says it's a virus or allergies or both. So I've been treating it both ways. I hope it will get a little better by this evening. I usually get relief in the evening. Wondering if this isnt a fungal sinus infection or a super resistant bacterial sinus infection. Wish I could convince a dr to culture my sinuses.
Let me know how u guys are doing, gonna try to lie down now this head/ear pressure is getting unbearable ugh!