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Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)

Geniculate neuralgia (possible)

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Old 12-29-2018, 11:37 PM   #1
Lvguy0612
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Default Geniculate neuralgia (possible)

Hello - first post here. I have been having inner ear pain that lasts a fraction of a second, comes and goes in episodes anywhere from 1 pain a day to a few times a day, to several days with no occurrence. It’s purely episodic and no rhyme or reason. It’s been going on for the past 6 months wherein I was originally treated by ENT thinking it was an ear infection. Ear is perfectly normal. Even clear CT scan so i could rest assure. Pain still occurring so went to dentist who said it was cavity on top right wisdom tooth. Proceeded to remove all 4 wisdom teeth- pain still came back. Was referred to Oral facial Dr as the ENT thought it might be TMJ related. He couldn’t find anything as I show no jaw pain symptoms-only ear pain. In researching, I have come across Geniculate Neuralgia and it terrifies me to think this may be my condition? Any help or guidance would be greatly appreciated. I made a neuro appointment but won’t be seen for 1 month.
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Old 12-30-2018, 05:09 PM   #2
kiwi33
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Hi Lvguy0612

Welcome to NeuroTalk .

I know very little about geniculate neuralgia but hope that members who do will be able to help you.

You could use the Search command (https://www.neurotalk.org/search.php) to find out what is already known about it here.

Best wishes.
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Old 01-10-2019, 01:31 AM   #3
wheelfan
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Default Just diagnosed today

I was just diagnosed by a brain surgeon today with this condition. He doesn't seem to be 100% sure, but he said that my cranial nerves look good (ruling out trigeminal neuralgia) from the results of my MRI. He said my case is super rare and he had to look it up and read about it before coming to the conclusion that this is the possible diagnosis. From reading the symptoms, it seems like I very much could have this condition. I'm pretty sad about it because I don't want to take the anti seizure meds because of their bad side effects. I haven't had pain for a month and a half now so I am just waiting for another attack to start the meds if I have to. My pain lasts for 2 to 3 days at a time, but can be absolutely debilitating. I shouldn't drive during an attack and I can't take care of my family. The weird part is that I can be having the most intense pain, but I can sleep fine. It has never woken me up. Anyway, I'm pain free for now, but I'm sure another attack is coming. They are pretty bad and leave me with a little PTSD. Anyway...I just came across this diagnosis today and your post was the first thing I found. Have you been able to get an MRI?
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Old 01-10-2019, 05:22 PM   #4
kiwi33
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Hi wheelfan

Welcome to NeuroTalk .

I am impressed with your surgeon. Being cautious and finding out what is known about a rare condition are both good signs.

I hope that you and he can work together to find something which is effective for you.

Best wishes.
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