Posted 1/22/2013 2:06 PM (GMT -6)
A year ago, I got this shocking, sudden pain. It was in every bone on the right side of my face, mostly the brow and cheek, every time I sat or laid down. As long as I stood I was okay. After three days, though, it was no longer relating to position, just all the time, and after a week it has spread to both sides of my face. After 3 weeks, it was anywhere there was bone on my entire skull. I was also 6 months pregnant.
First they said it was a sinus infection. Then a CT showed it wasn't. They put me on pain medication because they couldn't use preventatives. Then they did an MRI to look for a blood clot, but found a few small lesions. They did blood work to look for autoimmune and viral problems, it was clear. Then they tried a beta blocker which made it worse rather than better.
Had the baby, no improvement. So they did a spinal tap to check for MS, but it was totally clear too. They've since tried neurontonin, lyrica, verapamil, ultram, prozac, zoloft, amitriptyline, a course of steriods, a couple strong anti-inflammatories, depakote, topamax, and 3 more anti-seizure meds. None of them have worked.
It's basically sharp bursts of pain randomly occuring, still quite a lot through the face, but also on the sides, top, or back of my head. I get some neck pain, too. The individual bursts of pain are fairly short-lived, but they come in groups, with each group lasting for an hour or more, and several groups per day. Every day for a year. Each one is at least a 5 on the pain scale, with most being over 7, and often climbing to a 9.
There's no pain for light and sound, but I am really sensitive to them -- they irritate me. No eye pain, no aura. There is nausea, but only with the worst of them. I do get light-headed as well, and I find it really hard to concentrate. In the middle of a really bad one, it's hard to focus my eyes, so I can't read or anything like that.
Everything that has been suggested as a possible diagnosis doesn't fit the symptoms well, it would have to be a very unusual presentation. Has anyone had headaches that sound like this?