Lisa,
I hope your pain and other symptoms subsides. My information may not be useful yet. I'm scheduled for MRI tomorrow to "rule out"
AN (therefore, we'll know within a week if my symptoms are analogous to yours or not). However, the pain you describe and that of others in this post are very similar to pain I've been experiencing for about 3-4 months now. It is an intermittent throbbing pain that feels like I'm being poked with a dull pointy object. It usually feels like it's deep inside my ear, but often originates above, below and behind it. Sometimes it hurts around the temple/right side of head and seldom I feel it in my upper cheek. It is not too bad and is certainly tolerable, but at times can be intense. It usually lasts for 10-15 seconds at a time, but will throb several times a day (or several times an hour) depending on the day.
I've done a ton of research in the spirit of understanding the symptoms of AN and questioning whether I could have one or not. I've read countless patient stories and this type of pain does not seem uncommon at all, however it's usually not listed as a classic symptom. When pain/headache is given as a symptom, then it's usually in the context of a very large tumor that is pressing on the brainstem. However, based on my anecdotal readings, this type of pain seems not uncommon for small/medium sized tumors. It's not surprising that many doctors dismiss as unrelated.
Just as FYI, my other symptoms include: unilateral sensorneural hearing loss (low frequency) of 20-25%, constant hitched ringing tinnitus, pulsating swooshing tinnitus, occasional lightheadedness or mild off-balance (never spinning vertigo or classic dizziness). Perhaps related or not, but occasional eyeball twitching (once a week?) where everything darts back and forth very fast (most noticeable when reading for on computer) that lasts for about 15-20 seconds. I should know within a week.
