I have been experiencing severe bilateral ear pain that will be felt also in sides of my neck where Eustachian tubes are, as well as my face, jaw, teeth, and head. The pain has sent me to the ER and urgent cares numerous times and no one could really tell me what was causing the pain. They simply gave me narcotics and/or antibiotics and told me to follow up with a specialist.
The pain is a severe deep aching pain that can at times also be sharp and burning... but normally it is a deep ache. The only "triggers" that I have noticed are cold temperatures (especialllllly air conditioning) and weather change. Sometimes talking for long periods of time or singing will aggravate it also.
This all started in April of 2009. I had suffered a couple episodes of vertigo within a two week period, with one being very severe. (it lasted most of the day despite taking Meclizine) I did notice a little pain in my ears during that time so I figured that’s what triggered the vertigo. Just yesterday I actually had another episode of vertigo and couldn’t move my head or move around in my bed or I’d feel like everything was spinning. I just made a road trip from Florida to Virginia 2 days ago, and I don’t know if that triggered it. The vertigo cases I guess happen every few months however I do often get episodes of being dizzy/lightheaded. (almost daily)
I have seen a total of 3 ENT specialists. They have all concluded that there is nothing wrong with my ears themselves, but that it most likely is a referred pain. They even put tubes in my ears last August thinking it was a Eustachian tube dysfunction (no relief.. and it was an awful experience…) One doctor thought it was possible that I had allergies so they put me on allergy medication and a nasal steroid however, I didn’t see much change and had problems with the nasal steroid drying out my sinuses.
Since the pain has started, I have seen 3 different dentists to get my routine cleaning and I had each one check for signs of TMJ, and teeth grinding etc. however, they do not see any evidence just by looking at my teeth.
I even referred myself to a physical therapist to treat it as if it were TMJ to loosen up my neck and my jaw… however even after a month of therapy 2-3x a week, I was still in pain…
After the ENT gave up, they sent me to see a neurologist. I have seen a total of 4 so far. One didn’t believe it was neurologically related. 2 thought it could have been a type of neuralgia, so they put me on Neurontin (about 200mg daily) and was taking that for about a month or so will no difference. The last neurologist I saw did not believe it to be neuralgia so I discontinued the neurontin.
At a loss of what to do, I found an internal medicine specialist, I explained my situation to them. I was referred to an allergist because she was convinced I had allergy issues. I just got tested a few days ago and everything came back negative however, they concluded I had Non-Allergic Rhinitis, which they told me should not cause that type of pain.
They also did blood tests to check my Vitamin D levels in addition to glucose levels and my thyroid to see if anything would explain why I feel like I “crash” in late morning/afternoon. It has been interfering with my daily life a lot.
Because I am adopted, I really don’t know my family medical history however, my records indicate simply there was a history of “headaches.”
My own personal medical history consist of:
-     ovarian cysts (being treated now with birth control)
-     IBS (comes and goes)      
-     I am currently weaning of off Zoloft because I suffered from an anxiety disorder (in form of “emetaphobia”) for several years. I am almost 100 percent better now. (I actually lost about 25 pounds in a year because of the disorder, but I have gained that all back now… )
The last neurologist thinks I might be having some sort of migraine, but I cannot start the Prophylactic meds until I’m off the SSRI. It’s a matter of a few more weeks that I will get to try that. (Nortryptaline)
I apologize for the long email… but here is the “summary” I guess if it makes it easier to look at.
My symptoms:
Bilateral-
Ear Pain
Facial Pain
Jaw/Teeth/Neck Pain
Headache (frontal and on top)
Lightheaded/dizziness (random times almost daily)
Fatigue
Vertigo (about 4 episodes this year)
Sinus inflammation (due to probable non-allergic rhinitis)
Very sensitive to cold temperatures (air conditioned rooms especially)
Tests they have done:
Head/ Neck CT and MRI w/wo contrast- no abnormalities
I forgot the name, but they checked for nerve damage in face… but it was normal
Inhalant Allergy “prick/needle” testing- no allergies tested positive
Blood Tests-
CBC- normal range
Glucose- normal range
Thyroid- normal range
Vitamin D deficiency- normal range
Procedures done:
Tubes in ears (August 2009), haven’t fallen out yet- no relief
Occipital Nerve Block Injections- no reielf
Physical therapy on my neck and jaw- helped relieved jaw stiffness however, no relief of pain
Medications tried:
OTC Pain killers- No relief
Allegra D/ Claritan D/ Nasonex- No relief
Neurontin- (200mg daily)- No relief
6 day Prednisone steroid treatment- No relief (and bad side effects)
5-7 Rounds of antibiotics in the last year… no relief
Current Medications:
Zoloft 50mg daily (about a week away from weaning off)
NuvaRing (for ovarian cysts)
Ibprophen- 800mg dose for pain (helps a lot, but not completely)
Oxycodone or Tylenol w/Codeine when pain gets really bad