Posted 11/23/2008 6:19 PM (GMT -7)
I am also just under six years in, having a nonstop headache. I had to stop work many years ago also but I am doing a little better recently, as it sounds like you are in going from 3-5 migraines to 2 a day. The reason that I've been able to do a little better hasn't been any drug breakthrough or anything like that--I've tried everything that multiple headache clinics have offered, never achieving a single painless second. In fact it's been the realization that my headaches are NOT soon going away (and my pain won't even be dropping below a 7 any time that I can see in the future) that has helped. I've spent the last 5-6 years putting all of my energy into eliminating the headaches that it's no wonder that I couldn't bear to work. Now, I still cannot work, but I have been very slowly progressing from never leaving the apartment to getting up at a reasonable hour in the morning and working on a (small) to-do list.
You say that your headache frequency has about cut in half, so my advice to you is to cope the best you can during the periods of debilitating headache but make sure that their presence doesn't ruin any hours of your day when you don't have a headache, or even when it's just a bit more tolerable. I'[ve been told for years to approach the day hour by hour, even minute by minute, not letting blinding pain that might even last weeks ruin the week after that pain lessens, or even ruin the hour afterward. I lived years having constant headaches that went up to 10/10 nearly every day and I felt so hopeless and scared that when my pain level would be an 8/10 I'd be just as disabled as when I was at 10/10.
So, though I'd been told to not let the times of unbearable pain ruin the times when the pain was more bearable, I've only recently begun to live that way. There are certainly still times when I lie with a pillow over my face for hours, crying, but there are also times when I'm going out for a walk or making plans to try to finish my degree. Sometimes I can even start getting things done nearly immediately after the worst of the pain lessens and I'm working on being able to do that more often. I still can't work and I often still despair that I can do so little and that I have forgotten what it feels like to NOT have a headache, but the big point is that I can now do MORE than I could a few months ago and even more than I could a few weeks ago. I try to make it so that I can do more each day and, naturally, I have many days when I feel as hopeless as I ever have. But at least it's not every day. And even though the progress is painfully slow, its sooooo much better than truly going nowhere. Though I was very close to suicide not all that long ago, I do finally feel that I have some future to look forward to. And I think that is very important.
Just do the best you can, even if it seems very small. Just STARTING to climb out of that hole can make a huge difference.
Best wishes, always,
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin