Almost a year of constant head pain

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?

They've done several CBC's along with specific testing of a great many things. We've talked about a cardiologist before, but they don't think it's cardiac in nature, because all of my vitals are fine, and my blood pressure and heart rate are fantastic.

I'm almost always having dental problems due to really bad DNA and a misaligned bite. But we've done a dental consult and both the dentist and the neurologist say this could not be caused by dental issues -- it's too widespread and unpredictable for dental issues apparently.

It's been getting worse again the last month or so -- now instead of pain radiating from a single point to an area about the size of a tennis ball, it's huge sections softball size or bigger; instead of 30 to 60 seconds each burst of pain is up to 2 minutes; instead of coming one right after another, they're overlapping, and instead of 5 - 7 on a daily pain scale, they're now usually 7-9.

I also had some decreased sensation in my face the other day for about 30 minutes. My lips started to tingle like when novocaine wears off. I checked the rest of my face and it felt like it was under novocaine, like your cheeks or chin will get when you have dental work done. Where you can feel the pressure if you push on it, but the skin and subdermal layers are numb? Like that.

No, but my balance is great. No weakness, no numbness (though I have now had my face go numb a couple times), no vision or hearing problems...