Undiagnosed Geniculate Neuralgia

General General TN & GPN (Old Site)
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About 18 months ago, I got an outer ear infection (diagnosed by urgent care, and given antibiotic ear drops (I was in immense pain, and had lost most of my hearing suddenly in the middle of the night and I went to urgent care in the morning).
Then 3 days later, went to my primary care who diagnosed me with mastoiditis (she gave me 825mg amoxicillin for 10 days) -Told her I had lost most of my hearing, and behind my ear was tender (not painful, just tender) and I had numbness up and down my cheek.
She sent me to an ENT PA. He diagnosed me with a middle ear infection (He gave me 60mg Prednisone for a week with a taper for a week) and scheduled a hearing test. (I was still on the antibiotics)
Most of my hearing returned before the hearing test 6 days later. Hearing test showed that I had mild hearing loss in the higher pitches consistent with an acoustic neuroma. I was called in for steroid injections in the ear, and an MRI was scheduled.
I got a 2nd hearing test a week later with some mild improvement (and a 2nd steroid injection)
My numbness/tingling/pain has not gone away.
My hearing has returned, and my MRI which I got the results from today show no tumors, but show "mild" inflammation of the mastoid bone.
I'm now on 3200mg of Neurontin and 40mg of balcofen, and if I forget to take my meds on schedule I feel like a pencil is being stabbed into my eardrum, my eye starts to twitch, and my cheek hurts.
If I take my meds on time, my ear just feels like the eraser end of a pencil is in my ear canal, and I can get through the pain each day...
I don't believe I've had a FIESTA MRI, or any 3D MRI. Do you find them useful? My Neurologist and ENT have put that I have Postherpetic Trigeminal Neuralgia, and have me come in or get my meds adjusted when I can't deal anymore. I want an official diagnosis of Geniculate Neuralgia, not a general, well, this is pain that results from Shingles. (I NEVER had an exterior outbreak, and if it was shingles, wouldn't it be getting better?)
No mention of further tests, no follow up. Just me in pain. 18 months of pain with no answers.
I guess this is my welcome to the club?
And, did a 3D MRI help? Should I push for it? (I have Kaiser)

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I will leave the question about MRI being useful in diagnosing Gn to someone who may have that information.
I fully “get” your description of the EarPain. Mine is similar but feels like someone is corkscrewing into my ear at its worst and like the blunt pencil you describe when it’s behaving.
Mine is not post Herpectic. I had shingles visibly two years safer the GN started. We do have a subgroup here under GROUPS for Post Herpectic TN, maybe someone there can help you out. You can have PHTN even when the Shingles is cleared up.it lingers about, the pain can last a good while in some members.

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Thank you. Should I post this in that sub-group? And thank you for the kind welcome. Corkscrewing is a good description as well. Ice pick, which the doctors seem to use seems useless to me, as I always imagine an ice pick as a singular moment, because of the weight of the ice pick, it doesn't seem plausible to stay... like a downward pressure, and my shoulder is in the way... I know it is silly, as the concept of stabbing into the ear drum is the same no matter what device is doing the stabbing...


However I have to admit, that the steroid injections into the ear drum which WAS something entering my ear drum without any numbing didn't hurt as badly as the daily pain. (My hearing did return).

I will have to look up your profile. It is just nice to have a place with people who understand, and don't think I'm insane, or faking it, or wondering, thinking, it can't hurt that much...

Thank you!



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I think posting this discussion in the PHTN group an excellent idea :slight_smile:
And if you are insane, we all are here LOL