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?

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.