Through with Day 2 of I-Match, and I have learned something

So, yesterday we got orientated. There are two other people, both much older women, in my week besides me. Later we will meet with the people ahead of us. I already met one casually in the lobby, who came all the way from ALASKA to go through this. I told her about my friend who lives in a yurt in Alaska and gave birth to her first child there, miles from civilization, with only her mom in attendance.

We each saw the doctor both yesterday and today. She wanted to mess with my crazymeds (there are certain anti-depressants that reduce chronic pain but I’m not taking any of those at present) and I was like HELL no. It took years to get me on the cocktail I’m on now, which has (headache aside) made me feel better than I have in perhaps forever. I don’t want to screw that up. She said she understood, and just prescribed a beta blocker. Today she brought up the subject again and persuaded me to let her make one small change: extended-release Depakote, which I need to take only once a day, as opposed to regular Depakote which I have to take three times a day. She assured me that there is no other difference.

The first day I saw a physical therapist, and today started an exercise regimen. And also got infused for several hours. One of the drugs left a horrible taste in my mouth but otherwise it was all right. I had my laptop with me and surfed the net, so I was not bored.

Today in the group headache education meeting thingy I talked about my frustration and annoyance at my utterly ridiculous diagnosis. The psychologist in charge of the group said no one knows anything about New Daily Persistent Headache. He has a 1400-page textbook dedicated exclusively to headaches, and all of 1.5 pages are devoted to NDPH. There’s not much of an incentive to study it: it doesn’t kill you, it’s very rare, and because it’s pretty much a diagnosis of exclusion, screening for the study would take forever and cost untold millions.

He did share an interesting tidbit of information, however: although no one knows or can prove pretty much anything, the prevailing theory is that NDPH is caused by a viral infection. The majority of sufferers report that, shortly before their headache began, they got a virus and had a fever or whatever for a few days. Then they get better, and then the headache starts. The idea is that the virus causes damage to the nerves that cause headache, and even after the immune system kicks out the virus, the nerve damage remains. Of course, it’s got to be more than that, because (A) Not every NDPH sufferer says they had a virus beforehand and (B) Why does it only happen to a very few people and not others? But the correlation is very strong and they believe they’re on to something.

That theory applies to me just about perfectly: on September 17, 2010, I caught stomach flu from my boyfriend. I puked and was generally miserable for a few days, then recovered and went on with life. Then on October 13, I woke up with a terrific headache…

The $64,000 question, then: why, if Michael and I got the same virus, am I the only one with NDPH? Well, most NDPH sufferers have a history of other kinds of headaches — in my case, migraines afflicted me as a child, and have cursed every female on my mom’s side of the family for at least three generations. That might have something to do with it as well. Michael has no such history in himself or his family.

Of course, this is still just supposition and correlation and so on, not proof. It’s just a theory that happens to make a lot of sense. It certainly doesn’t help me any, even if I were to know for sure that this is what caused this to happen.

I talked about how, last year around this time, when I was desperately looking for answers, how devastated I was when my MRI came out clean. When I got the results I broke down and cried, because I had been so hoping it would show something that would explain what I was going through. I would have almost been relieved to find out I had a brain tumor. (I was quite sure, even before the MRI, that I didn’t, since I had no neurological symptoms besides pain.) I just wanted to have something you could see, something I could point to on the scan and say “Here, there’s the headache, right there.” Instead this is an invisible and elusive enemy I’m fighting. The other women in my group (who don’t have NDPH, incidentally, but other kinds of chronic headache) expressed similar sentiments.

I think the program, so far for me, is doing what it is designed to do. They outright said they could not cure me and could not promise any pain relief at all. But I am being educated and enlightened and learning coping skills and all that stuff.

Fun anecdote: when they asked me this morning how bad the pain was, I said it hurt pretty bad and felt like something was pulling on my hair. A short time later I had a sudden thought and realized that something was pulling on my hair: my headband was too small, too tight for me. I pulled it off and immediately felt much better.