Anyone with Supraorbital Neuralgia here?

Hi Everyone. I have been diagnosed with supraorbital neuralgia due to a sinus surgery I had in 2008. I have been suffering with a daily headache that is above my eye and runs down the side of my nose. Just wondering if anyone here has that kind of neuralgia and have you been able to resolve it? I have tried most of the anti-seizure meds, nerve blocks, botox, etc. I next want to speak to my neurologist about something like radio frequency ablation. I’m just trying to find answers as we all are. I thought maybe this forum might be helpful. Thanks!

Hello Cheryl, having a nerve problem, I understand how you feel. My TN problem are from a brain tumor which is inoperable. My meds had stopped working for me and the neurosurgeon suggested a rhizotomy. I think it’s the same as the radio frequency you are referring to. I had it in July 2016. The first one didn’t work. The second one took away the electric shocks and left me with a few side effects. Still it is better than the excruciating pain. I am back on the tegretol now because I started a few twinges and was afraid it might come back. You may want to read about the rhizotomy and decide. Good luck. Gloria

I had an encephalocil fixed in my sinuses, via brain surgery, and now my forehead is one big metal plate. I have pain and pressure that started almost two weeks ago. Also so swollen in my sinuses, that I can’t breath on my whole left side, with severe pain in the whole left side of my head. I have taken two weeks of antibiotics, and it didn’t help. Got a CT today, and seeing a ENT to see what’s happening. Also been running a low grade fever.
Thinking may have to have surgery. Sigh.

Hi Gloria. I looked up rhizotomy and I think it is the same thing as radio frequency ablation. I’m also looking into a procedure that freezes the nerve. It’s supposed to be less painful than burning. I feel like medication just isn’t working for me anymore and I need to do something more drastic. Do you mind if I ask what side effects you had from the rhizotomy?

Oh man, that sounds absolutely awful! I hope your ENT has some answers for you. It sounds like you have been through the ringer already.

Hello Cheryl, sorry it took so long to reply. To answer your question, it is my right side that is being affected. The discomfort with the itching and numbness is somewhat daunting at times but I try not to complain. Good luck to you. Gloria