Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Tati-
I wish I could really give you a big hug- your anxiety sounds so much like mine. I have daily panic attacks, usually in the morning and its hard to get out of bed when they happen. I'm panicking right now because I go to a new ent in an hour and I'm so worried that she will say nothing can be done.
If you search my user name (jenplus2) you can read about the after effects of my dilation surgery. I worry sometimes that it was done wrong BUT I do have anxiety so I might just be psyching myself out. It seemed pretty straightforward as far as the procedure went, took about 6 wks to get back to normal, during which time I experienced some pretty scary stuff. Episodes of patulous Eustachian tube, tubes THUMPING open and closed when I swallowed to the point where I stifled yawns and started avoiding eating/drinking. The only thing I can think of is that maybe it wasn't done right? But it's just putting a tiny catheter with an even tinier balloon in your e tube and then they pop it and hold it for 30 seconds... Like I said, it seemed straightforward. I was symptom free for 2 months after the healing period (June 2012 surgery, July 2012 started to feel normal, late September 2012 symptoms returned). Then my ent recommended allergy shots because he figured my allergy regimen if Zyrtec and Flonase wasn't enough. I started the shots late October 2012. My symptoms faded by the end of November.
This year, the symptoms reoccurred but a variety of things happened right at that time so I'm not sure what caused it:
1.) I decided to take up winter running, as I usually only go spring thru fall (like to run outside). It was FREEZING (live outside of Chicago) and I did cover my ears, but I was literally frozen when I got in. No immediate symptoms, just obviously done muscle soreness.
2.) the next day after the running, I got my allergy shots. I'd been sick for 2 wks prior with laryngitis so bad I couldn't even talk, and when your that sick, they don't let you get the shots. So this was my first day back. No immediate reaction though.
3.) the morning before the ear symptoms came back, I was eating cereal for breakfast and as I crunched down on a bite on the left side of my mouth, something pulled painfully in my cheek/jaw area. It hurt enough for me to take ibuprofen. I felt strangely worried about it.
The next day I woke up and my ear felt pressure-y.
I don't know what is the actual cause, nor do I know why it went away last time. I do know that I can pop my ears either with valsalva or yawning and its not really hard so they aren't 'blocked'. But something is causing them to feel full/pressure-y. I have to try not to pop them constantly because I get obsessed with it and making sure my tubes stay open. I feel like it makes no sense that I can pop them but they feel no change in pressure.
I know what you mean reading about people dealing with this for so long, how can they stand it. I truly don't know and I've been dealing with it for a long time too. We have no choice really, I guess, but to keep going and hoping that it will just disappear one day. What else can we do? I have 2 little girls and a husband and a job, I can't just stop, though my panic attacks do slow me down alot. Also my jealousy of people who don't have this problem, I literally can get so caught up in being mad that I'm dealing with this and others aren't. I guess for me, the way I deal is focusing on one day at a time, and knowing that I really DON'T know what will be in the future. It may stay but it may NOT. Knowing that I've got that 50/50 shot helps me too. And knowing that almost everyone is suffering something in their life.
Tell your dr about the uncontrollable anxiety. It's possible meds can help, but as my dr says, it won't take the physical problems away. There's no magic pill. BUT, low dose klonopin does help me when I'm having a panic attack.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I've been thinking all along my ESD has to do with TMJD, because I have a sore jaw, but no other symptoms...and I heard clenching can cause ESD. But I am starting to look into other reasons why, such as allergies ect. I just don't see my tubes acting up for this long because of allergies?!?! I know how you feel about feeling like you clear them and then the next second they feel full again, and its also confessing that the ENTs I've gone to look in my ears and say nothing is wrong, I've gone to four and there is something wrong, maybe they say that because they see no fluid? But I'm thinking they are inflamed or muscle spasms or something. So frustrating... does anyone have dizziness or a off balance feeling from this?
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I have had vertigo a few times when dealing with this. Even eye flashes and recently headaches which I never get. I have an appt with an opthomologist about my eyes because any type of eye flash should be medical evaluated- but now I am reading that it can be a symptom of TMJD. I haven't been wearing my custom guard over the past few nights, and it feels like it's healing some. But I also wonder if I am clenching because clenching your teeth without a guard can really cause damage to the teeth. But I'm not sure what is going on so I am seeing an oral surgeon Friday, to hopefully get a test done, scan or x ray or something. It's just a consultation. Maybe you should see your dentist and ask them first. If you are waking up with pain in the jaw you are most likely clenching or grinding your teeth at night. If the pain comes throughout the day (like mine does) you could have a bad bite or your jaw could be misaligned causing the ear pain/congestion feeling. Since you already saw an ENT for this I would go to your dentist. Ask him and he may refer to you to a specialist.
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen—good luck with your ENT appointment today, sending positive vibes your way. Please let us know how it goes
Sarah—I don’t get dizziness, aside from the normal light headedness due to lack of proper diet caused by all this stress. My main complaints are crackling every time I swallow, ear fullness as the day progresses, and intermittent pain in my right ear.
Have you been to an Neurotologist to rule out an inner ear disorder?
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen- I am currently on Xanax only at night, but was thinking klonopin may be better? I heard it lasts longer? Do you know much about this anti anxiety med? And any crazy side effects you have experienced? Xanax has helped but doesn't last very long. I don' want to keep upping my dose. I only take 1 mg right now. And I have no side effects except drowsiness which I want to have, since I take it before bed. I also hope this helps relax my jaw at night.
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Sarah-
Dizziness is common when experiencing middle and inner ear symptoms. Allergies can over time get to the point where they're affecting your Eustachian tube. I started having allergy symptoms after having my 1st daughter. At first it was only itchy nose, sneezing fits, and then it progressed to eye symptoms, then ear symptoms. This was gradually over the course of 6 yrs. Research ear symptoms of allergy. It's possible, but unless you've done allergy testing, you won't know.
Did the ENTs you saw order an hearing testing/tympanograms? That would really be the only way to know that you ears are okay. Looking in them and seeing no fluid buildup isn't a reliable way of determining if your e tubes function properly.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I have not been to a neurologist but it's in both ears and I've seen 4 ents and 2 dentists who have made me special night guards which just make it worse so I'm thinking it has something to do with clenching. I've also had 4 hearing tests (where they blow air in yours ears? and the sound proof room to hear the different sounds?) Ive passed all every time, thats why I'm thinking its muscle related or inflammation or a small tube...IDK, no one knows! I've also have CT scan and MRI...all normal
Last edited by sarahj626; 05-07-2013 at 09:10 AM.
Reason: spelling error
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
Klonopin has a 12 hr half life, meaning half of it is out of your system after 12 hrs. It's one of, if not the, longest acting benzodiazepines. It also helps muscle spasms, and helps me when I have that funny tight feeling in my jaw. Please research it and you will see it is sometimes Rx'd for things other than anxiety. I currently am allowed to take 0.5mg up to 2x daily. This is considered a low dose. If you already take a similar dose of Xanax, you might need an even lower dose of klonopin because its quite strong. If you are experiecing vertigo, you should really be seen by an ent though, because you could have, as TL81 mentions, an inner ear (as in the part near your brain) disorder. Vertigo and ear pressure are common symptoms of these types of disorder, so they need to be ruled out.
Tati-
Thanks for your kind thoughts. We are in our way and Ill let you know how it goes.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi all,
Just finished with my appt. Apparently my e tubes are functioning as normally as can be possibly looked into. She used the nasal endoscope (camera) to view the stupid things in my throat and apparently they're opening and closing, used the pneumatic otoscope (blows a puff of air at your ear drums) to look at my ears and apparently the ear drums move normally... This is getting crazy. She wants me to see a facial pain specialist. Arrghh! I STILL feel like its in my ears. She wasn't concerned about anything ent, just told me to stick with my allergy shots and Zyrtec and flonase are my friends,etc.
I know I've been full of info lately but not so much right now. Feel very frustrated and exhausted by this 4 month struggle, especially since the total time I've been dealing with this is going on 18 mos now, though it is off and on. Time to regroup my thoughts on this.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Tati-
You should try to get in to see Dr Poe in Boston since you are fairly close to him. He's an otologist and happens to be the one who developed the Eustachian tube dilation procedure. I think I'm going to try for an appt with him. I called up there recently and was told to fax my medical records relating to this to his office. He reviews the records to see if he can help and then they call you to schedule an appt. I live near Chicago, so it'd be a ways a away for me but I feel not many drs know much about Eustachian tubes. According to this one, mine are functioning normally, so I'm really at a loss. I am not sure if I need to be tested for an inner ear disorder or what but I'm sure as heck not going to just let this go. There's got to be a reason, but in my gut, I'm just not sold on tmjd. The MRI showed no abnormalities with my jaw joints themselves, so if its a muscle problem, isn't there an actual dr for that? Myofacial pain specialist? I'm just not sold on it. I guess it could be the case, but I feel like its implausible.
Try to take your mind off the ears today if you can, I know, easier said than done. I'm going to try to do the same so I don't have a panic attack.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen,
That’s so funny that you mentioned about Dr. Poe because I called his office the other day to schedule an appointment. I was told the same thing, fax records, his PA reviews, and if they feel it’s in fact a ETD diagnosis (currently he’s focusing on pediatric patients but is taking adult ETD patients only), then they will schedule an appointment. However, get this, his secretary said out of state appointments are being booked 10-12 months in advance! The reason has something to do with the fact that they try to schedule tests, appointment, and any possible surgery in one visit. Another determining factor is whether or not they would have to see you in the “ETD clinic” (sounds fancy, lol). I couldn’t imagine having to wait that long but I guess it would give me hope.
I am waiting to see a new neurotologist at the end of this month. She is going to view my tubes via the endoscope through the nose, and based on what she says, I will fax my records to Dr. Poe in order to initiate the appointment process. My fear is that they tell me my Eustachian tubes are functioning properly, and that takes me out of the running for the balloon dilation surgery. By the way, did you read posts by a woman on the board that goes by screen name dlt48? She had the surgery with Dr. Weeks in California. After the first surgery her tubes closed back up after she came down with a cold. However, she then had the surgery a second time with a bigger balloon and it was a complete success and she’s been clear for over a year. Perhaps this is what they have to do with you?
You have been a tremendous support to me today, thank you! I will keep you in my prayers. Let’s stay in touch and hopefully we can find a solution to this problem once and for all
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Tati,
Yes I was on the way home and on here on my iPhone and reread some past posts to kinda get ahold of my thoughts. My concern with seeing Poe is that its quite far and honestly I'm afraid they won't see me because my e tubes are said to be functioning properly. I initially had the surgery because they were completely blocked shut (couldn't pop them at all) but now they I can, and my tympanograms are ok, and my nasal endoscopy shows them working, AND pneumatic otoscopy shows my ear drums moving easily, that they will either make the appt and then tell me nothing can be done, or not make it at all.
Yes I've read dlt48's posts and spoke to her last year. Based on jennifleck's experience with Poe, I'm assuming he would have not recommended another dilation. Even the ent I saw today recommended that I not re dilate. I honestly would be a little scared to because my e tubes kept getting stuck open after the procedure and I was terrified that they wouldn't re close. I cannot describe the terror and panic I experienced with that. I know my tubes aren't blocked, maybe they're slackers but not blocked off.
I'm glad I could make you feel better. I'd love to stay in touch, it helps to have someone to talk to that knows what you're going through!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen, do you ever have any popping or grating sounds when you eat? Can you open your mouth wide enough without tightness in your jaw? When you swallow is there a crackling sound, like every time you swallow?
__________________
Mild Scoliosis
Tilted Pelvis
Lower back problems
Sciatica off and on
RLS
TMJD
Anemia
Small hernia by belly button (due to pregnancy)
Mortons Neuroma in right foot, by toe
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
My jaw cracks when I open and close it and also my ears crackle and pop every time I swallow. I have gone down the TMJD route with no help so I am having allergy testing to see if it might be allergies effecting my e-tubes.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Mandolyn-
I do have crackling when swallowing but its coming from my ears- if I put the pads of my little fingers slightly in my ears then swallow, I hear it come from the Eustachian tube, not the tmj. The crackling is sometimes an indicator of Eustachian tube problems too, not just tmjd. I'm scared to spend $900 on a splint that may be useless. I want 100% confirmation that my e tubes are working normally before I go down that expensive route. I think I'm going to need to see a different dr at this point though because I didn't feel like the dr today was as well versed in e tube issues as I need.
Sarah-
I think it's great that you're trying the allergy testing. Who knows, you might find your answer there. I agree that tmjd doesn't sound like the answer, though some say their symptoms are caused by tmjd. If you tried treating it that way and it didn't work, you are right for moving on. I think tmjd is obviously a very real and painful condition, but I don't like how quickly its diagnosed when no one can figure out what's going on. I'm a clencher, been a clencher all my life. Never had any ear symptoms from it. I did get ear symptoms from my allergies though and from upper respiratory infections, sinus infections, etc.
I might be wrong guys, but I'm totally still not sold on the tmjd theory for myself. It might be for others but I'm not sure about me. I feel like I have more searching to do. I have to follow this ETD thing till I can't follow it anymore, and then move on to other things. I might just pay out of pocket for a tympanogram at this point to check my middle ear pressures since the ent wouldn't irder a new one today. Sigh.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
JEN- I am sorry the ENT didn't go as you wanted I have pretty much decided most ENTs don't know much about ETD...my only TMJD symptoms was the ear symptom and a little tightness in my jaw but no locking or awful pain so I'm not sold on it either, and the mouthpieces made me feel worse. I am trying to get in to our local teaching hospital in Portland called OHSU to see a ENT there and also hopefully a rheumatolgist to rule out other issues, like imflammitory issues, I was even thinking of looking into lyme decease, I am just searching for an answer for all of this, as I know you are too. I'm keeping Dr. Weeks and the balloon dilation surgery in mind too as a last resort.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Sarah,
Didn't even think about seeing a rheumatologist. Ill hafta keep that in mind. I know allergies are an auto immune condition, and inflammatory in nature, so I wonder of I maybe have anything else going on.
I agree most ENTs are clueless about ETD. They seem to only know anything when it has a clear cut solution, like ok you need sinus surgery or your tonsils out. The ent today told me that she thinks my ears are fine, but even if she didn't, she would only recommend to keep doing what I'm doing now. Isn't doing the same thing over and over expecting a different result the definition of insanity?
I resorted to my klonopin at this point to calm myself down because I was getting really anxious over not getting any answers today. Feeling a little less all over the place, which is good.
I hope the wait to see an ent at the teaching hospital won't be long. I'm seeing drs at a teaching hospital and it just seems to me that the Ent field is not as advanced as many other medical specialties. It feels almost archaic- here use this nose spray and this nasal rinse and see you in 6 wks! Its the same regimen year after year. Definition of insanity.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
This is just my opinion but I would never go to a teaching hospital. I want a doctor with long experience in whatever he/she is going to do to me, not someone fresh out of school trying things out on me.
Good luck...let us know how the hunt for help with ETD goes. Beside the fact that it's harder to hear, the constant screech of the tinnitis is very frustrating. Some days it takes a lot of patience with others when what I really want to do is tell them to leave me alone so I can lay down and cry.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
This is just my opinion but I would never go to a teaching hospital. I want a doctor with long experience in whatever he/she is going to do to me, not someone fresh out of school trying things out on me.
Good luck...let us know how the hunt for help with ETD goes. Beside the fact that it's harder to hear, the constant screech of the tinnitis is very frustrating. Some days it takes a lot of patience with others when what I really want to do is tell them to leave me alone so I can lay down and cry. It's exhausting.
I have pretty much decided most ENTs don't know much about ETD...my only TMJD symptoms was the ear symptom and a little tightness in my jaw but no locking or awful pain so I'm not sold on it either, and the mouthpieces made me feel worse. I am trying to get in to our local teaching hospital in Portland called OHSU to see a ENT there and also hopefully a rheumatolgist to rule out other issues, like imflammitory issues, I was even thinking of looking into lyme decease, I am just searching for an answer for all of this, as I know you are too. I'm keeping Dr. Weeks and the balloon dilation surgery in mind too as a last resort.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan 
