4 year ear ache - out of ideas

Parent Cafe
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<p>I hesitate to ask medical questions on this type of forum, but frankly we are out of ideas!</p>

<p>Four years ago, during HS, D started complaining of ear pain. She described it as pressure and is sounded like the typical feeling when you just can’t equalize the ear. Since her HS commute involved a 1700 ft. summit, twice a day, we figured she just had difficulty in the equalization process because of sinus or allergy issues. It tended to be in one ear and decongestants provided some relief. Over the course of time, it became a persistent feeling of ‘pressure, coming from deep inside almost like from the jaw’. Over the past four years we have done the following:</p>

<p>• Standard ENT visits – no hearing loss, no visible Eustachian tube dysfunction, no infection, and no liquid. In other words – all structures look completely normal. She has gone through at least 3 of these complete workups – always with the same result.</p>

<p>• Had a scope run up the nose and down the esophagus to rule out any obstructions. </p>

<p>• after one time ocular migraine – the intraocular pressure and nerve response was tested to rule out any indication of brain involvement.</p>

<p>• Subsequent MRI of brain – all normal</p>

<p>• both dentist and orthodontist have evaluated her for possible bite or jaw issues. And, even though she didn’t have the classic TMJ jaw clicking and there is no evidence of teeth grinding, she went through a series of TMJ physical therapy sessions. These made the symptoms much worse since the therapists went by a ‘paint by number’ protocol and did not listen to her when she gave feedback on the fact it was making it worse.</p>

<p>• She has on occasion visited with a cranial-sacral chiropractor that’s provided temporary relief. Once she left for college we found her a CST masseuse who is also able to provide partial temporary relief.</p>

<p>• Her PCP suggested a round of low dosage anti-depressants since for some unknown reason these sometimes ‘shut off the pain signals’. She has resisted this path because of potential side effects.</p>

<p>• throughout all this time, decongestants SOMETIMES, helped.</p>

<p>• the symptom is now in both ears but stabilized. In preparation for an up coming flight and study abroad, she decided to visit one more ENT…someone completely new. Again, the same results – hearing is fine, nothing abnormal. This ENT stated that since symptoms were on both sides it was most likely not a pinched nerve and would most likely not respond to antidepressant therapy. At the end of that last visit, in frustration, as the Dr. was leaving the room – again with no new insight – D restated very clearly that it is pressure deep in each ear now and she is not imagining it! She was told to come back for a procedure whereby a small puncture would be made in the eardrum. If this relieved the pain it would indicate a non-obvious Eustachian tube dysfunction. If that’s the case they’d put in temporary tubes. Mom was not too happy with this approach, but at 20 she can and should make her own medical decisions.</p>

<p>The result of the eardrum puncture is more pain! Now she needs to wait until this heals. (BTW, her BF’s mom is a doctor and was astonished that anyone would do the eartube puncture procedure in this situation)</p>

<p>So, both she and I are at our wits end. She says she done with Dr.s since they just write her off, and so is just going to live with it. At 20 she’s just too young to accept chronic pain.</p>

<p>Open to any new ideas…</p>

2

<p>Has she ever been put on antibiotics?
Id wonder if her sphenoid sinuses are infected</p>

3

<p>My son had recurring ear problems for years. His ENT told him to pinch his nose and blow every hour when awake and it would equalize pressure the same way tubes would, without the tubes. It did seem to work. Not sure I’d recommend trying it without consulting whichever ENT she trusts most. Homeopathic remedies were often very helpful for the ear pain. To determine the right remedy for her, she’d need to visit a practitioner. We were able to find one locally who is also an MD.</p>

4

<p>I’d go further down the road in investigating issues with her tempero-mandibular joint (TMJ). To me the fact that the therapeutic manipulation DID affect her pain (albeit in the wrong direction) might be indicative of causative involvement. Perhaps she should see someone else to get input about that, and a therapist who would LISTEN to what she is telling them…</p>

<p>Best to you. How very frustrating this must be for her and for you!!</p>

5

<p>I’m with churchmusicmom. If a certain treatment made it worse, then what is the opposite of that treatment? </p>

<p>I do know people who’ve gotten relief from chronic pain with anti-depressants. I know she’s fearful of the side effects but perhaps remind her that she can always stop. It might be at least worth a try.</p>

<p>I think it would also be worth a try to see a pain management specialist. At least that is a doctor who would listen and take her seriously.</p>

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<p>We used acupuncture for earaches with my oldest as young as age 2, and it worked every time (and after all else had failed). Don’t ask me to explain why - I don’t “believe” in it. But it worked. (Worked for sinus infections as well.)</p>

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<p>Is this ear pain accompanied at all by dizziness? I would guess not, or you would have said so. How about ringing or any other sounds that she feels are originating in the ears rather than the outside environment?</p>

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<p>How frustrating! I would not give up on doctors just yet, and before moving to ADs (elavil?) I’d try again to get answers as to why there’s the pain. Has she had a CT? I’m not a fan of unnecessary tests, but given how long this is going on, a CT may provide info that an MRI didn’t. I’d probably try a neurologist as well. I don’t know where you live, but I’d find a top hospital and find a doctor from there - I went through lots of tests with my DD for a very long time trying to get a correct diagnosis for a medical problem, and I learned that having the right doctor from a quality hospital does make a difference.</p>

<p>Hoping you get answers and relief soon.</p>

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<p>Does she wear orthodontic retainers? They can make you clench your teeth hard without realizing it, especially at night. Even without retainers, she may be clenching her jaws (not grinding her teeth). Did the TMJ specialists look at that?</p>

10

<p>I agree with Bay. As I said, I think some issues with the TMJ would be first in my mind. I have had some of that myself, and you can definitely experience a sensation of “pressure”…</p>

<p>I have a Master’s in Speech/Language pathology, so I am not just making stuff up, here! Though I am certainly NOT an expert in that area, I would strongly recommend you urge her to find another dentist specializing in issues with the temporal-madibular joint and get his or her opinion on what is going on.</p>

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<p>Thanks everyone. Part of the problem I am encountering is D’s own reluctance to push further and her resignation. </p>

<p>I agree with those who suggest further TMJ/ physical manipulation since, yes, it has had an effect. I suggested a CT scan to the PCP after the clear MRI and he is very very reluctant (esp. in light of the recent info on the overdoses occurring) and was of the opinion that it was unnecessary. She’ll be home for part of the summer so I’ll push and nag at that time. She had orthodontics and I think may still wear her retainer a couple of times a month. I’d suggested a mouth guard for those nights she doesn’t wear the retainer…yup…resistance.</p>

<p>As a family, we have had good experiences with acupuncture…and I am a big believer. </p>

<p>What is so frustrating is that this kid only had her first round of antibiotics at the age of 8 - for strep throat. She’s never had a diagnosed ear infection. Argh…</p>

<p>I forgot to state in my original post that she’d also tried steroid nasal spray to no avail. The separate times she tried those it either had no effect or made the situation slightly worse. I wish she was 12 and I could just force her to do some of these things!</p>

12

<p>Has she ever had symptoms of jaw clicking, pain at the joints? TMJ pain can be controlled by low dose “older” anti-depressants. Many of their side effects will go away after about 2-3 weeks and in low dose should be okay.
Does she have allergies of any type? Are symptoms worse at one time of day than another? If allergy pills have helped in the past, has she tried any of the newer ones? they are not created equal and sometimes you need to switch them around to get relief. what worked last week may not work this week.
(Claritin, Zyrtec, Allegra?)
Pain when the weather changes? (more atmospheric changes?)
What does work? Decongestants (taking the full dose–pseudoephedrine (now behind prescription counter–have to ask the pharmacist–not phenylephrine which is off the shelf).<br>
Does applied heat (like from a hair dryer) help? Hot shower? (more atmospheric changes)
Is she doing anything physical such as trying to clear her ears from pressure (holding nose and blowing for example) that may send mucus up into her sinuses?</p>

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<p>dietz, I’d suggest trying again to get her to wear a mouth guard. I grind my teeth at night and these sound really similar to the symptoms I experience if I miss a few nights of wearing my mouth guard. It really can’t hurt to try! I hope she does. If it doesn’t work, she can always throw it away. Just get one of the cheap ones that you mold to your mouth from the drug store. No need to get one of the expensive ones from the dentist. </p>

<p>I’ve had ear and hearing problems since I was little. I know how bad they suck. I hope your D figures out what’s going on!</p>

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<p>Hesitate to suggest this, but this is something I used to do–put a small piece of a cotton ball at back of mouth (like over wisdom teeth) on each side. When you clamp down, it’s soft and is just a gentle reminder to relax the jaw. Totally tasteless and if you swallow it (but you won’t), it won’t hurt you. Easier and less cumbersome than a mouth guard and easily done during the day also.</p>

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<p>How was sinusitis ruled out? CT scan or X-ray?</p>

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<p>I can’t say sinusitis was actually definitely ruled out. She’s not had a CT scan…just an MRI and frankly, I don’t remember if she had sinus X-Ray’s…I’ll have to ask her. Do sinus infections show up on MRI’s?</p>

<p>gouf78 - our cranial-sacral chiropractor/witch doc :slight_smile: - whom I adore and has helped us all in numerous situations…suggested a very similar technique.</p>

17

<p>It sounds like since this is a chronic thing & she hasn’t had a helpful diagnosis, that a CT scan would give more info than an MRI( and is cheaper).

[Sinusitis</a> - In-Depth Report - NY Times Health](<a href=“Well - The New York Times”>Well - The New York Times)</p>

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<p>I have that type of pain but when it gets really bad for days I get Bell’s Palsy. For me I found I can not have any exess pressure outside my head. Driving around with the window down or skiing with my ear exposed. Even walking outside on a windy day can cause the pain. I have to take a NASID stop the progression to Bell’s Palsy(I have had it mildly 3 times) or prednisone once the face goes numb. </p>

<p>My sister and brother both have this problem. They both had surgery and we have small canals around the area where the facial nerve has to pass near the ear. Maybe your dd has the inflammation part and has larger canals so the facial nerve is not affected. I don’t have infections when this happens either. Just maybe she has something similiar.</p>

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<p>My boyfriend is a dentist that specializes in TMJ. You may want to have her get a second opinion on that. If you PM me with your D’s location I could get a referral for you.</p>

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<p>D1 had bad headaches for years, daily. At first they thought it was somewhat normal hormone issues. She survived on Advil. No one found a cause. A neurologist found nothing wrong and did either a ct or mri. Finally, we learned about “rebound effects” from Advil (and, I suppose, other drugs. I know DH had this issue with decongestants, years ago.) The idea is the body becomes dependent on the meds, essentially hooked. So, is your daughter on anything that could be causing the same cycle and has anyone discussed tapering off? This worked for D1. Within a few weeks, what had been relentless was manageable, even ordinary.</p>