Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Shay-
I really hope this ent is going to get to the bottom of this for you. When I had bad ETD I couldn't pop my left (problem) ear at all with valsalva. Post dilation procedure I can, but that makes the ENTs that I've seen think I'm making up the pressure/stuffiness that I feel. I am from the Chicago area, I live about 25 min south. You are so brave to get on a plane I swear I will never ever set foot on one until this is 100% cleared. It's great that it went well for you though! I'm so tired of feeling like garbage because of this honestly, I don't know how anyone lives with this for so long. I at least have had breaks, months where I'm normal. I have the same issue with popping my ears- if I go pop crazy it literally makes everything worse. Plus when I pop them, I have to gently suck in to make sure they close back up- I unfortunately think they may have become a little hyper compliant since my dilation. Does the popping actually relieve your ear pressure sensations or is it like a placebo effect, where it honestly doesn't help but you want it to so you tell yourself if does? I never experience a change in that sensation no matter how many times I pop my ears. It's mind boggling. Or maybe its not really my ears, but honestly it FEELS like its my ears...I'm just not sold on tmjd yet. Maybe because its so darn crazy expensive to treat. I can't be wasting money on 'possible' treatments. At least with ENTs they can give you options that insurance pays for! Tmj disorder isn't covered by our insurance. The price of just a bite splint which is the initial therapy is $900 alone and doesn't guarantee results. It's just nuts. And I'm not convinced. Sigh. I have another ent appt may 7th so I'm hoping I can gain some insight into what's going on. If this one says its not my ears I think I might need to give that up and start looking elsewhere for answers.
Naomi-
It's interesting that your current problem started with a root canal/dental infection. I'm not saying that its what you have, but you should look into dental procedures and tmjd. Many people claim their ear symptoms of tmjd began after a major dental procedure like a root canal or wisdom tooth extraction. Just a thought. The device you mentioned is the EarPopper like shay mentioned. I doubt it would make you worse, but again, only you know your body. The ent who did my dilation procedure had one at his office and it didn't make me worse but I did feel weird for a bit. It went away though. It's designed for safety so I wouldn't worry about it blowing out your ear drums or anything. Have you had any ear pressure tests to see if your middle ear is functioning normally? My pressure tests turn up ok. Makes no sense.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I've had ETD for 18 months now, I have tried so many different things and none of them worked, except for when I saw a chiropractor. I have seen him 3 times and after the third time by ear stopped clicking altogether. The next day the clicking returned to some degree but was much reduced and when it does return I just move my lower jaw to the left (the problem side) and hold it for a couple of seconds, this seems to stop the clicking again.
While having treatment my chiropractor noticed that I had an imbalance in the muscles in my jaw/face. He then said that it seemed like I'd been chewing on just the one side of my mouth, the right side (opposite side to the problem side). This is what I've been doing and it is making the problem worse.
It is quite likely that I have TMJD and ETD and that they are inter-linked.
So my advice to you is see a Chiropractor, I cannot recommend it enough!
The other thing which reduced my clicking before seeing the Chiropractor was liquid nasal Ephedrine, prescribed by my doctor, this reduced that pain and clicking but was nowhere near as effective as chiropractic treatment.
Good luck and I hope that you can achieve the same success that I have.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Quote:
Originally Posted by anna0289
I've had ETD for 18 months now, I have tried so many different things and none of them worked, except for when I saw a chiropractor. I have seen him 3 times and after the third time by ear stopped clicking altogether. The next day the clicking returned to some degree but was much reduced and when it does return I just move my lower jaw to the left (the problem side) and hold it for a couple of seconds, this seems to stop the clicking again.
While having treatment my chiropractor noticed that I had an imbalance in the muscles in my jaw/face. He then said that it seemed like I'd been chewing on just the one side of my mouth, the right side (opposite side to the problem side). This is what I've been doing and it is making the problem worse.
It is quite likely that I have TMJD and ETD and that they are inter-linked.
So my advice to you is see a Chiropractor, I cannot recommend it enough!
The other thing which reduced my clicking before seeing the Chiropractor was liquid nasal Ephedrine, prescribed by my doctor, this reduced that pain and clicking but was nowhere near as effective as chiropractic treatment.
Good luck and I hope that you can achieve the same success that I have.
Anna x
Hi Anna,
Thank you for sharing!! Do you/did you have constant pressure in your ear as well? I dont have the clicking ... just constant pressure in one ear like I'm descending on a plane (but I can't clear it with yawning, valsalva maneuver, etc).
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I'm new to this board and I'm looking for some support. About a month and a half ago I got a pretty bad left ear infection which made my ear canal shut close. After antibiotic drops, the infectio cleared but I could tell it wasn't 100% normal. When I would blow my nose, I sometimes experienced a sound like a machine gun going off--I'm assuming this was the mucous moving through the tubes. 2 weeks later I developed a horrible viral cold/cough which lasted 3 weeks. About a week prior to the viral infection, I developed crackling in both ears every time I swallow and sometimes when yawning. It is much louder in the ear where I had the infection. Now I also get the horrible pressure on and off throughout the day, along with intermittent pain in my right ear. This is causing me to have severe anxiety. Has this resolved for anyone? Anyone tried the ETD dilation surgery? I' so desperate at this point
The following user gives a hug of support to TL81: JenPlus2 (05-06-2013)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I'm wondering if the eustachian tube disorder is only muscular, meaning the muscles are in spasm does this make you a candidate for the balloon surgery? I'm desperate as nothing else has worked.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
TL81-
I'm so sorry you're going through this. No one can understand how much ETD affects your life unless they have gone through it themselves. I have been dealing with this for over a year now, even had the dilation procedure done, but it hasn't truly been that much of a help to me. I had gotten a simple cold last year in January and it led to my ETD. I tried everything for months till I found a dr out by me in Chicago who did the ET dilation. I was perfectly fine after the initial healing period, but 2 mos later was back feeling pressure. I have always had allergies, which I had been doing the sublingual drops for, but was advised to start allergy shots instead at that point. I thought maybe the shots were working because the pressure went away about the end if November. I was fine till January rolled around again. One morning I was eating cereal and crunched down strangely on a bite because some weird sensation happened in the left side of my face. The next day the pressure was back. I've been dealing with it since. I have been at least able to pop my ears due to the dilation surgery, which I could not before. But pop as I might, it provides no relief. It's like I never even did it. It's a struggle to keep a positive attitude when you're feeling this way so long, I know.
My thoughts on your gunshot noises- I think they're probably a middle ear myclonus (spasm of the muscle). I have gotten this too a few times, not constantly though. It's pretty scary when it happens, but its just a spasm. I find that when I have this going on my klonopin (anti anxiety med) helps to calm it. I found out that klonopin is sometimes given to people with middle ear myclonus because it has some antispasmodic properties. The other symptoms are ones that I also experience regularly, though I really don't know how abnormal SOME crackling upon swallowing is because the e tubes are lined with mucosa similar to your nose. If 2 slightly moist surfaces are pulled apart- well in my mind that might just create some crackling. I'm not a dr though. I also get the pressure and pain occasionally, but my pain will only directly relate to if I have a crazy ear popping binge or if I yawn too much to pop them as well. It seems to irritate something and then it feels swollen and sore in there. I also feel like instead of pressure I get 'fullness' which is hard to describe. It feels like something is in there, or something is swollen, alot of the time. I started thinking it has to be my allergies but I haven't gotten relief yet from shots because I've started reacting like crazy to them lately. The fullness doesn't seem to respond to allergy meds either, or sinus rinses, or anything really. Not even popping my ears will alleviate it. I'm seeing a new ent tomorrow that specializes in allergies. I'm hoping that she will be able to help me get to a solution, since my allergist is useless.
It's very very possible that yours will spontaneously resolve. If you haven't already, try to get in to see an ent. They will most likely try conservative measures before anything more invasive, like steroids, steroid nasal sprays, etc. Let me know how you're doing.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hello, I have read all of your posts and your story sounds so much like mine. I even live in the PNW and saw a top TMJD specialist with no difference in my ear symptoms....its been going on for 8 months and I do think clenching my jaw had something to do with it, but I'm at my wits end. I am considering going to see Dr. Weeks in San Diego but don't know if I would even be a candidate for the balloon surgery since mine seems to be muscular. I am also trying to get into OHSU. I haven't done allergy testing yet. If you have any advise that would be great. Thank you!!!!
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Sarah-
Different drs have different criteria for the ET dilation. It's not a quick fix, you still must treat the cause of the problem, which can be sinus related, allergy related, a total mystery, etc. I don't know if the problem is purely muscular, or that its related to muscle spasms. Some people have e tubes that have never been as efficient as other people's and some event occurs that causes ETD. Tubes can be too narrow, scarred from previous infections, swollen by allergies, etc. It's up to you and your dr really to figure out the cause. I have allergies and I'm almost positive I have narrower e tubes. After my dilation surgery I could pop my ears which I could not do before. I also experienced some periods of no symptoms, but the symptoms came back. It doesn't seem like there's any quick fix for this . It totally messes with my sanity and I can't afford to lose it because I have a husband and 2 little girls that need me. I have had to see a psychiatrist about this and my body rejected every med we tried except sedatives. I have an Rx for klonopin that I use when I feel very anxious over this. I'm not suggesting this to you, just relating my experience. How long have you had ETD and what are your symptoms?
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
This has been going on for 8 months. I would wake up in the morning and have a sharp pain in my right ear for a couple months on and off and think "I slept on my ear wrong" and then the pain would go away. Then in Sep. of 2012 my right ear got a fullness feeling like water in my ear, and I got really dizzy. Do you have dizziness? Then the following week all the symptoms spread to my other ear, so both ears felt full of water and I was really dizzy. Never considered TMJD because my jaw never hurt, I saw 4 ENTs of the past 8 months, had a CT scan of brain and jaw, and and MRI of brain all normal. The only thing Ive come up with is muscle spasms in my jaw from clenching effected my E-tubes. So I've tried seeing a TMJD specialist and got a custom mouth guard, this did nothing to help, if anything made me clench more. So I'm kinda at a loss now as what do to. The clenching makes sense but I'm wondering if those muscles will ever relax. I just started looking into other causes for this such as allergies ect. It's getting really expensive and hard to be a good mom feeling sick all the time. The ear symptoms are annoying but the dizziness is the worst and I can tell its coming from my ears, which is weird because every test says the ear pressure in my ears is normal.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I have had this for 8 months now. Started as ear pain, then fullness, then dizziness. Ive seen 4 ents they all say my ears are fine. The only thing that made sense was TMJD so I started down that road but it hasn't helped, I do have a tight jaw and know I clench so it could be this is what caused it but wondering if the muscles can relax on there own. I havent gone down the allergy route but this all came on during a really stressful time in my life so the clenching makes sense to me. I have had MRI, CT scan act all normal which Im thankful but it is so hard to take care of my kids feeling life this. And its really expensive all these drs appt. The ear popping, crackling is annoying but I have dizziness too which is the worst...anyone else have dizziness?
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Hi Sarah-
I know what you mean about the difficulty taking care of the kids! It's SO hard. I'm also the only income in my household right now so I can't even take time off to deal with this because I wouldn't get paid for it. I think that drs usually attribute allergies or tmjd to this problem. I've had an MRI of my tmjs done because I too have experienced the muscle spasms in my face and sometimes pain in my tmj especially if I go ear pop crazy. I have no idea what's really going on... I have had normal tympanograms so far, though I will most likely get a new one from this new ent tomorrow. I've had ct scans, the MRI, audiological testing, etc just like you. This is at least annoying, at most life ruining. I can't believe I had ET dilation and it STILL is happening to be honest with you. It's hard to feel like you've found that magic bullet and then be let down.
What's the nature of your dizziness? Are you able to stay up when it happens? Or do you just feel unsteady? I have occasionally had dizziness but its more like that unsteadiness. I don't know what your drs have told you, but I've read that tmjd can cause dizziness and even frequent headaches.
I can totally empathize with you, this is so hard to put up with. I'm hoping Ill get some direction from the new ent tomorrow. I am over it, my thoughts are beginning to be that I may need to try to see a specialist out of state, like Dr Poe in Boston, who is a Eustachian tube expert.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
I'm also thinking about seeing a ENT out of state, Dr. Weeks in San Diego. The dizziness is more like a off balance feeling but there all the time and so annoying, Im a mess, and I have no idea what to do next. I was holding out hope the balloon dilation would help, hard to hear it didn't help you. I'm sorry! Yes, this is life altering, it's effecting everything I do. Have you had allergy testing?
The following user gives a hug of support to sarahj626: TL81 (05-07-2013)
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Yes, I've done the 2 hr intradermal testing. I'm allergic to everything in the world except cats, and a few trees and grasses. I've had cats as pets all my life, so its probable that this is why I'm not allergic. I'm actually sitting here at the allergy office right now, just got my shots. I do not know if they're helping or not. I'm scared they've made it worse. In the beginning with shots, I started to get major relief, but my allergist told me it was a placebo effect, because shots take up to 1 yr to show a measurable difference. I have also tried Zyrtec daily for awhile, which may or may not help, and Flonase (nasal steroid) that may it may not help. Wish it was more clear cut.
I am also a clencher! I catch myself doing it all day, but have yet to find a tmjd specialist who's actually a specialist and able to read my MRI. The radiology report from my MRI show that my jaw deviates to the let upon opening. I was able to open my mouth as far as they wanted (20cm or mm) but had SEVERE ear symptoms about 1 hr after the test. So I might have tmjd as well as the allergies! Craziness!
I think you could benefit from allergy testing in that at least you'd know if there were any other contributing factors besides the clenching. If there are allergies,treat them, that's my theory- if you have it try to treat it as aggressively as possible. I wouldn't say that the ET dilation was a total failure, it did give me the ability to valsalva my ears, but I wanted it to fix everything . My idea of the dilation, and why I had it done was that it widens your ET up so that they can work better. Ive always thought my ET were narrower than most so I thought this was the answer. It's super annoying that it wasn't. If you'd like to know more about the procedure and my experiences with it, which included episodes of PET (patulous Eustachian tube) where they would get stuck OPEN and I would hear my voice inside my head and my heartbeat, you can search my user name here. It was horrifying. I was very afraid it wouldn't stop happening. Luckily it did. I don't even know if this a normal side effect. Scary stuff. It's something to look into if you're feeling it could help you though. I think the results vary person to person.
Jen
Last edited by JenPlus2; 05-06-2013 at 02:11 PM.
Reason: Missed something
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
good to know, its weird thought because I don't have any other allergy symptoms like sinus problems or anything like that so it seems crazy it would just effect my e tubes.
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Can this type of dysfunction mimick TMD? I think I have TMJD, but haven't had any x rays. I had a custom guard made and my symptoms got WORSE. So I stopped wearing it and am afraid I clench at night. My left ear has the main problem along with my massater muscles being sore and tight. It feels like that side of my face is infected. I do get a grating type sound though in my ears when I eat sometimes and I get a thumping in my ear, it comes and goes. When I workout, if I do cardio there is a constant clicking in that ear, but only when doing any type of jumping or jogging move. I am pretty sure it is my TMJ though because I can't open as wide as I used to and my muscles are so inflammed it keeps me from being able to open enough to even eat a banana. I am suppose to meet with an oral surgeon since the guard made my pain worse. A 400 dollar guard! I hope an x ray will tell what is really going on...
__________________
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
Mandolyn-
There's no way to know if you have a problem with your Eustachian tube unless you have audiological testing ordered by an ent. The specific test is a tympanogram, which is a painless one second check of the pressure in your middle ear (space behind your ear drum). The machine they use will then tell the audiologist if you have a normal middle ear air pressure, which usually indicates a properly functioning Eustachian tube. I think tmjd is said to be one of the causes of ETD because the muscles that are spasming in the face and jaw can interfere with the muscles that open and close the Eustachian tube. You can research this connection. I have experienced ETD like symptoms even after a surgery to correct this. It all began with a weird feeling in my face when I bit down on some cereal back in January. I have been told that I could possibly have tmjd, plus I suffer from pretty severe allergies, for which I receive shots.
Here's the thing- if your ear/face feels infected on that side, its worth checking out. You really should be seen by an ent who can order audiological testing and examine your ear. Don't try to wait it out or assume its just tmjd. It's better to have a firm diagnosis so that you can start treating it to hopefully feel better. ETD seems to be a strange and almost willful problem, in that it can start up just out of nowhere and stick around for a long time if it wants. I personally am seeing a new ent tomorrow who also specializes in allergy. I'm hoping for some new audiological testing that will tell me what's going on in there so that I can make treatment decisions. If there's no significant ear findings, I'm going to need to start down the tmjd path again.
The thumping you experience is most likely a middle ear myclonus. It's a spasm of the muscles there. I have occasionally experienced this as well, and for me its brought on spontaneously and really freaks me out. ENTs usually diagnose and treat this problem, so again, there is a definite need for you to see one. A tmjd dr won't be able to treat any middle ear problems, even if they are caused by your tmjd.
As for the X-ray- have you asked your tmj dr about something that shows more detail, like a ct scan or MRI? If your problem is muscular, the X-ray will only show bone. Even the more advanced imaging doesn't always show a problem with the tmjs or the muscles is what I've been told (by the dr who ordered my tmj mri) I too have the feeling of tightness in my facial muscles and my ability to open my mouth seems slightly decreased, but my MRI showed only a deviation to the left of my jaw when I open. I was for sure feeling they'd find something but they did not. The dr who ordered my MRI was a neurologist. She wants me to see a tmj dr because she feels I have a tmj problem despite the mri results. She's the one who told me that MRI's, which are highly detailed, can sometimes even come back normal or almost normal despite the patient experiencing significant pain or symptoms.
I would honestly recommend the ent visit, even if it seems like you know what the problem is, you may not know the full extent. It's important to get that ear checked out. I hope I don't sound too bossy, I just get worried about people when one of their main senses is being impaired/altered.
Jen
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Thanks Jen. I see my regular doctor at the end of this month. If the oral surgeon can't find anything wrong then I will bring this up to my regular doc who can refer me to an ENT. I think a referral will cost me less, but not sure. I just think of all the money I have spent so far on medical stuff (i have back issues too) I'm on xanax for clenching and muscle spasms in legs, RLS. So I'm just ready to be done with all this and I wish I was fully covered by insurance!! My insurance is horrible.
__________________
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, thank you for the support. I am also sorry to hear that the dilation surgery did not work. Also, the side effects you mention sound horrible. Can you tell me what criteria your doctor used to determine you a good candidate for the surgery in the first place?
I actually went to a TMj specialist at the recommendation of my ENT and he ruled out TMjD. I think my issues are caused by mucous after having been sick. When I blow my nose (not even hard), it plugs up. I am able to pop it back open though. I also experience the fullness as the day progresses and sometimes pain in my right ear only. My main complaint is the crackling/crunching noise every time I swallow. Do any of you experience this? I'm constantly wondering if this will ever go away. I am in a constant state of anxiety 24/7 and I'm thinking I need meds for this. Jen, what is your experience with Klonopin? Does it help with anxiety?
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
TL81-
The ent who did the dilation determined that I was a candidate because all prior treatments, including a PE tube at one point, failed.
Klonopin is extremely helpful for anxiety, and might also help with those gunshot sounds in your ear. You can have the middle ear muscle spasm on its own without tmjd. There are others on this board that have experienced the same thing, even me, although the noise is softer.
I know how hard it is not knowing when and if this will go away. I too can pop my ears, but its like I'm not doing it... Don't know how else to describe it. It literally changed nothing about the fullness I feel. I hope that this will let up at some point for me too. It's so hard to stay positive anymore when this relapse has been going on for 4 months.
Has your ent offered you any kind of options at all?
Re: Eustachian Tube Dysfunction - My Diagnosis and Treatment Plan
Jen,
I had never experienced the gunshot sound prior to having the ear infection at the beginning of March. After that I’ve only experienced it about 4 times when blowing my nose. The first time it was so loud that it made me jump!
That said, the only thing my ENT has offered is Nasonex and told me to give it time because he believes it will get better. I’ve heard so many horror stories of people living with ETD for years though and that’s what’s creating the anxiety for me, it’s really debilitating. When I think of the possibility of this not going away, I get panic attacks. I don’t know how people do it
I do have an appointment with another ENT/Neurotologist at the end of the month so we’ll see if she offers any solutions/alternatives. Can you tell me a little more about what you felt after the surgery?
As I sit here and write this, I can’t take the pressure in my left ear mostly, absolutely horrible. Do you have the crackling/crunching upon swallowing? How do you cope with this? I find that it occupies my thoughts every minute of every day. I never had problems sleeping, and now due to the anxiety, I can’t sleep. Any suggestions on how you keep sane through all of this are greatly appreciated.
