I'm Shannon, and I still don't have an effective diagnosis -- a few different ones have been floated, but none that really make sense.
Basically, on Feb. 10th of last year, I developed pain in my face that occurred every time I sat or laid down, to the point I physically could not stand it, running along all of the bones on the right side of my face. I was 6 months pregnant. Initially it was deemed a sinus infection by the ER doc. Within 3 days it had spread to my left side, throughout my entire head, and stopped being relieved by standing. After a course of antibiotics did nothing, I had a CT scan of my sinuses and they were clear. So they sent me to a neurologist, who prescribed a beta blocker. Not only did it not improve, it got worse.
The neurologist waited for a month to see if it progressed, and when it did, she ordered an MRI to rule out a blood clot. No clot, but a few small lesions. So she ran blood work to rule out several viruses and autoimmune disorders that could cause the clot, everything was normal. I gave birth, and they continued.
Then there was a spinal tap to check for MS and other abnormalities, also completely clear. So they put me on neurontonin. No luck. Tried Lyrica, then verapamil. She transferred me.
The new doctor tried anti-depressants including a 6 month course of amitriptyline, ultram, Imitrex, and fioricet, diclofenac sodium, and Depakote. Nothing. I was transferred again.
Newest doctor claims icepick headaches, and starts throwing anti-seizure meds at me, I've tried 5 of them now, including Topamax. Still nothing. (Though the constant messing with my anti-depressants has given me a nasty case of RLS) A ton of side effects -- I'm a walking pharmacy pamphlet -- including an allergic reaction, but no relief.
I had been on Vicodin during pregnancy because they couldn't try any preventatives. It has been rendered all but ineffective because my tolerance has climbed so high. The ER has tried toradol, but it doesn't work, so they give me dilaudid injections when it gets to be really bad, but I'm starting to get looked at funny when I go in.
It has been every single day, generally a couple bouts at least of a few hours per round. No light or sound sensitivity, though I am more easily irritated by both. It's intense sharp bursts of pressure and pain (it's like the chestburster from Alien, but in my head) that can come anywhere in the bones in my skull, and frequently accompanied by a duller ache in the forehead.