I was recently diagnosed with eustachian tube dysfunction - anyone out there with any helpful hints for me? It started in January and there are some days where my head is just pounding on the side above my ears and goes all the way down to my neck. Does anyone else have this symptom? It's a terrible pressure, like I can feel the pulse in my head, a disconnected feeling or drunken sensation. I also have fullness in my ears. I'm tired and miserable. Today it is raining and I seem to feel a little better. Does the weather change anyone else's symptoms? I'm using nasonex and thats all. Go back to the ENT this week - any suggestions on what else I can ask him?
The following user gives a hug of support to Cindy Sundlof: truconundrum (12-23-2011)
Boy can I relate to your symptoms. I was wondering, if you have headaches and jaw pain along with these sympsoms? Maybe even worse in the AM? See I have the same ear problems you have described but mine are caused by TMJ (there is a thread on TMJ at this site as well) Due to the inflammtion of my jaw joints and soft tissue, its causes the swelling of the muscles around my Eustachian tube. All these muscles are very close to the jaw, this coudl cause the head pressure and pain in from of and in ear. I totally understand the "dazed" feeling that you wrote of, my ears also pop every time I swallow, just a contstant feeling that Im zoned out. I hope your is only your ear, and clears for you soon, but I was just wanting to let you know that if it doesnt go away that you may want to check into the possibility of having TMJ, and check a list of TMJ symptoms to compare. You dont need have ALL the symptoms to have TMJ, my headaches are alot more tolerable that the dizziness ear thing, but other have headaches jaw pain the worse....good luck. Also could you tell me what the ENT suggested with his prognosis?? I amd currently being treated for TMJ, DDS tryign to reposition my jaw forward aways, as of now its so far back that it pushes into where the ear cavity is. Its not visible from the outside, x rays have shown it to be. Just follow up on this bein ga possibilty of you dont get better, for your sake I hope so much that you do NOT have TMJ, its a horrible thing. take Care
Boy ear probs, neck pain AND headaches...you sound like my twin. I think you doin right in havin all other avenues checked out first too, nerio,, ortho etc. I went thru this routine before I made my way to a dentist familiar with TMJ. Whats odd is that NONE of the 3 ENTS I went to , or the nuero, or the ortho Dr knew ANYTHING about TMJ , kinda sad I think since it can effect all the areas that they deal with. Well..keep me informed on how things go....I hope your seein better days soon. "if" you would ever check into it possibly being TMJ then make sure and find a "reputable" denstist that works with it daily (VERY important)...keep me posted....Im sure everything will be ok.
Bye for now Suzy
I went to Dr. yesterday and he sent me for neck x-rays. He seems to think the neck pain/headaches could be caused by a cervical spinal problem. From feeling along my jaw-line and having me open and close my mouth the Dr. doesn't think it TMJ. I guess there isn't any swelling. He still thinks the eustachian tube problem is there also. How many things can be going on at once? Does your TMJ cause headache pain in the back of your head or is it on the side? I don't have any jaw pain. Thanks for the reply.
HI again Cindy,
YES YES!! My headaches are mainly at the back of my head (the worst ones anyway), in the occipital area....and the neck pain, again its all part of it with me.
As with you, I went to check out all the "other" possibilities..neck MRI/ct scan..nerve conduction testing..there was no major problems in my neck or my ears (3 ENTS later)...back to the culprit..TMJ.. which can cause ALL of these symptoms.
Unlike alot of tmjers, I dont have horrible jaw pain, I have tightness alot, and had some clicking upom opening , but the mouthpiece I wear has stopped the clicking. TMJ can effect people in so many different ways...and it seems I dont fit the "norm" profile, yet all the symptoms that I have fall in the "list".
I hope all checks out well with your testing,
if everything does check out ok, and you look into the possbility of TMJ, please PLEASE read up on it first (or Id be glad to e mail you privately about it). And MAKE sure you go to a dentist that has much experience in diagnosing and treating it. Just hang tight to see what all your other tests show,..... approx 2o different health care providers it had taken me to get the cause of my problem. It seems so many DRs, such as ENTS..Neuros...etc are not very educated about TMJ (in my area amyway). I would think that something that effects all the areas of the body they work with, they would have a better understanding...so just because an ENT "doesnt think" its your problem, dont put the possibility on the backburner. Please keep in touch and I wish you well in your upcoming Dr's appt. Take Care Suzy
Just an update: I had xrays of my neck, which showed nothing wrong. Now my Dr. wants me to try a cervical pillow. Just paid $30 for one - I've only used it one night and my neck is still stiff - guess I need to give it more time. The weather has been warm lately and it's really messing with my head - is it just me, or does this happen to others too? I have no idea who to contact regarding TMJ around here, I am really wondering if that might be my problem too. Advice is welcome <IMG SRC="http://www.healthboards.com/ubb/smile.gif">
Hi, I am new to this message board, but I am experiencing most of the same symptoms you mentioned and I am trying desperately to figure out what the problem is. Please keep the message board informed as to your results. I will try to do the same. I have gone to two ENT's with no help to this point. I have had the roaring or pulsating sounds in my right ear, like I can hear my heartbeat, which seems to be worse at night. I am not sure why. At times the pulsating or roaring, sounds like a hum or wheezing, but also in a pulsatile or rhythmic way. It is very frustrating. ENT's have recommended Flonase and Claritin D, they have not helped. My current ENT has suggested putting tubes in my ear, I am not sure this will help my particular problem. I have made an appointment with a TMJ specialist to see if it may be related to my jaw, as I also always have neck pain in my right side and headaches quite often. I have had CT scan, MRI, NEVA and those have been normal. I am also considering having my Thyroid levels checked as I have heard that sometimes if your Thyroid is not functioning properly it can produce this type of problem, also haveing blood checked for anemia. In any case, hopefully there is something out there we may find out to resolve this.
If there is anyone else out there who may have some advise please help, or if anyone out there has had tubes inserted in their ears for the same symptoms, please reply. Sage
Cindy and Sage,
Well, Ive posted to this same thread (with Cindy) a couple times. And I too have all the symptoms, every test that Sage has mentioned I have also had done, all were negative for problems. The 4 ENTS Ive been too, seemingly looked at me like I was crazy , since I am experiencing all of this YET "nothing" is visible to them...go figure?
Was wanting to ask Cindy if she's been checked for possible TMJ yet?
And Sage it sounde like your on the right track as well. I DO have TMJ, and these are all very common symptoms that come along with it. Although most I talk to that have it, do not have ALL the symptoms as I do , IM lucky I guess (mine is considered chronic) since it been 2.5 years and three splints later, and I still have daily 24/7 headaches/neckpain/shoulder pain and ear symptoms. Yet I have a WONDERFUL new DDS I am with now, and his faith and confidence in a positive outcome for me, mean more to me than anyone can ever know. Anyway, just wanted to share with you that TMJ is VERY possible here.
Keep me posted, and if you wish I would be more than happy to correspond via e mail, if you have any questions for me. Not that I dont want to share here, just explaining TMJ and its frustrations can get extremely lengthy.
Cindy.....how are ya girl? Ive posted a couple times, yet somehow always seem to erase my message, and I get too frustrated to reedo it (fumble fingers).
Let me know how things are going..please
and BOTH of you keep the faith....it HAS to pass sooner or later. Healing wishes
Well, there's not much to update regarding my condition. I've mostly sworn off doctors. I told my Dr. that medicine is just a guessing game and I'm sick of it. He actually agreed with me. I've been using a cervical pillow and I think it does help, although just a little. Mornings are the worst for me because I wake so stiff. The Dr. suggested physical therapy. I have no idea where to go to get TMJ info. I have dentist appt in Aug., and was going to ask about it then. I already know the answer though, he won't feel anything and therefore won't be able to diagnose me. Do I sound a little negative? Yes, it is very frustrating. I've been using my Nasonex every day although I'm not sure it really helps. Seems like regular asprin gives me some relief. Very humid summer days make my head very fuzzy. And alchohol, makes me feel hung-over 5 minutes after I drink. Good thing I'm not a drinker! Spending time outdoors (on a nice, calm, not windy day) makes me feel the best. That's it for now. Best wishes to you.
No way to you sound negative to me....you sound frustrated as I have been time and time again and some 20-25 health care professionals later. It gets to where you dont trust anyone!! At least you seem to have a family Dr that is with you on this, mine more or less shrugged me off in my many attempts to convince him this was all real (oh...an I refused his Prozac Rx..therefore..I upset him I guess)
There is a site (well many) but this particular one...will give you names of a DDS that works with TMJ in your area. JUst go to the following link and look for "referrals". Now I cant say the ones ya find are the BEST...but most should know enough about TMJ, to at least say yes ya do..or no ya dont have it. Please dont hesitate to vent here..I'll listen.. I KNOW How maddening it is. Its sad to me, the lack of healthcare some seem to get when they beg for it. ( I thought it was just in my town, but obviously not). I hate to say this, but many times after I walk out of a Drs office I think to myself...if for ONE minute this guy can go home and see his wife....daughter...sister...or mother suffering this way then maybe MAYBE it will become "real" to them...sigh...I keep my thoughts to myself. Keep me informed. I sure hope ya feel better soon. Once again, can you relay ALL your symptoms to me, and the severity of them? If you dont mind. <IMG SRC="http://www.healthboards.com/ubb/smile.gif">http://www.tmjstack.com/index.cfm
Ok, I've been trying to compile a list of "symptoms" and it's really hard. Here goes:
Fuzzy sensation in my head, not true dizziness, not vertigo, sort of a pulsing, throbbing, yet not painful.
Fullness around ears, jaw directly by ear.
Throbbing (not painful) along back of head.
Disconnected feeling, especially bad in stores or on an escalator.
Stiff neck pain (but have easy movement of neck) that travels into shoulder blades and into chest. (x-ray showed nothing)
Cracking sounds in head and neck when rotating neck.
Feeling of malise, need to rest, but not tired.
That's all I can think of right now. I've been off the nasonex for three days now (Dr. thought I should experiment and see what happens). I've been feeling worse, so I guess it really does work. I'm going to give it a week or so and decide what to do next. Any suggestions???? Thanks.
I am new to this message board, but the symptoms in the last reply here are exactly what I feel in my neck and head. I used Flonase. I had tubes put in my ears 14 days ago and they are making things worse. I know exactly how you feel, but I don't have TMJ. All of this is the result of an ear infection I had in 1993 and the residual effects of Eustachean Tube Dysfunction. It is just awful. Nothing helps the headaches. My neck cracks and yet I don't have stiffness. I have full movement. But right where the Eustachean Tube and Jaw bone come together is where the pressure starts. It is all related to the infection and what I have been going through since the infection. I am going back to the ENT today to see if the tubes should come out as they provide no relief. They are supposed to help pressurize ears on a plane which is where I have all of my trouble, but I don't see how they will work, when my own Eustachean tubes give me so much trouble. How can fake tubes relieve the pressure? Does anyone know the answer to that.
Your post was a long time ago - I hope your symptoms have gone!! I have that pounding in my head. It resonates inside my head and drives me silly. When I walk the pounding is worse. Would love to know if you or your doctors came up with a reason /cure.
Cindy, Hopefully you have found a treatment by now but thought I would share what has worked for me. I began suffering with eustachian tube dysfunction a few years back. I have been prescribed numerous things but nothing ever really seemed to work well.
One night, in pain and at my wits end I found this online:
Eustation tube massage - You place a finger under your ear and behind your jaw in that ridge between your jaw and your neck. Then using medium force against your skin move your finger along that ridge to the center of your throat. Do this on both sides 5-6 times every few hours to help massage the mucus loose.
Instead of my fingers I used a tennis ball and used firm pressure as I slowly rolled the ball along. I did this for about 10 mins. on one side then unexpectedly my ears popped and I felt a change in sinus pressure as they immediately drained. I was shocked and totally didn't expect it to work but it did! I repeated this every few hours (or when pressure returned) until it was gone completely.
This may not work for everyone but its worth a try!