It started with ear pain, or was it face pain…or the headaches? I remember the ice pick GN pain, and the TN strikes starting around the same time. I had an MVD in January of 2013 on the left side where they found three blood vessels compressing the trigeminal nerve (one artery and two veins.) At that time I was told that the pain on my right side was probably because of the left TN and it would go away after the MVD fixed the left side. It didn’t. I had a right side MVD in April, 2013. They found two blood vessels compressing the trigeminal nerve (one artery and one vein). I hoped all would be better after those two surgeries, and initially I thought they were (and even reported in a discussion here that they were) but that wasn’t the end of the story.
I still have some face pain, bilaterally, awful, oh yes, but not as bad as before the surgeries. I have (diagnosed) bilateral GN pain, and (diagnosed) bilateral ON, and now the pain is sometimes in my throat as well. I think my head is still healing from having two MVDs in one year, I get scalp pains and pains around the scars. I also have fibro and arthritis so some days it is difficult to get up!
I am on gabapentin, cymbalta, lexapro, hydrocodone, and a fentanyl patch. I have a tens unit, lydocaine patches, and a gabapentin compound cream (as well as some other meds that I am on).
At least I have an absolutely wonderful pain doctor, he is compassionate and he listens. I get frequent nerve blocks for the bilateral ON and TN.
I feel like there is so much going on at once and wonder if, since I was unlucky enough to have bilateral compressed trigeminal nerves perhaps could I have other compressions causing issues…and isn’t the way to find out via surgery? If so which side do we start with? Left or right? GN or ON? Feels like a whack-a-mole game. One doctor said that I have “funky architecture”.
So there is a bit of my story, I have been on here a lot since this all started, but mostly reading. The stories people tell, the ideas they have, the support they show has helped me, especially on nights like tonight when my left ear is in severe pain and I am also getting TN strikes and just when I think things might be calming down I get the ice pick in the right ear…then my teeth…i do turn to this site. Thank you, all, for sharing your stores, for supporting each other on here, and helping me!