I’m going to answer Molly’s questions one at a time so I can give more thought to each one individually. I also think it will be easier to get a dialogue going if there’s only one questions at a time. Of course, the only way to get a dialogue going is for you to submit comments (but only if you’re willing to make your thoughts public). Nudge, nudge. 😉
How long have you suffered and how much of your time is spent in pain?
I’ve had headaches all my life, with CDH setting in when I was between 11 and 13. I’m now 29. So the answer to the question is “way too long.”
I was able to control them pretty well in high school and college by taking tons of Advil and Tylenol regularly. They knocked me flat when I was in grad school, with severe dizzy spells as the prominent symptom.
I spent about five years in horrendous pain. My average level was 6; never lower than 2 and sometimes as high as 9.75. (I’m reluctant to label anything a 10 because I don’t want to tempt fate.) In that period I was barely functioning or confined to bed four times a week on average.
With an occipital nerve stimulator and drugs that help — a combination that I’ve been using for about 3 months — my average pain level is probably a four. That average includes the fluctuations of pain in a day. I can be at a one or two and have the pain spike to a six for a few hours. When seven or eight level pain hits, it almost always knocks me out for the rest of the day. I still have days or partial days where I’m stuck in bed, but only about 10 times a month. Sad that 10 times a month means I’m having a good spell.
I think I cope with it pretty well, but I get tired of feeling like I’m a rag that’s been wrung out. And having dark circles under my eyes. Headache is an invisible illness, but I can see it on my face too clearly.