I have a headache condition called hemicrania continua. It is with me 24/7 and has been my constant companion since December 2007. The pain levels for this type of primary headache can vary from annoying to excruciating. Unfortunately mine decided right away to be excruciating. For most of us once it starts it never ever goes away, not one second of one day. Only one medicaton has found to be really effective. If you can't take THAT medicine there are really very few other treatments that work.
After struggling for several years with excruciating levels of headache agony I can say that my pain is mostly under control. Between having an experimental occipital stimulator installed, and now having to use fentanyl pain patches and neurontin for neuropathic pain, the hemicrania continua pain has receded. It is still there, but just at a faint memory of what it can be. Occassionally it decides to wake up and let me know it still can cause a great deal of pain. On those days I remember what life was like before I got an occipital stimulator. Not so good.
Although the pain has mostly gone, the physical symptoms are still occuring at the same frequency they did from the beginning. Inability to sleep, problems with my left eye turning in and dilating, constant nerve pain on the left side of my face, constant nausea (well, I have other reasons for the nausea so that could or could not be The Headache), sensitivity to temperature, light, and sound. The physical feeling of cold that pervades my life is a reminder that The Headache is lurking in the background twisting my brain in directions it shouldn't go.
I say the pain is under control but I can't do much physical activity or the pain still flares after about an hour of effort. I can't take narcotic pain killers of a certain type or the pain returns. I am constantly having to think about how much I have done, how much I have rested. It's a major pain in the patootie.
Since having the breakdown of the stimulator controller last fall, I worry about another stoppage of my technology. The remembrance of bad times past makes present pain free days sweeter but also put a shadow of fear into each day. I wish I could go back to the few headache free years I had post hysterectomy.
I try to remind myself how lucky I am to have gotten into a study, to have gotten the degree of relief I have from The Headache, and to be able to continue with my life. When I grow frustrated with the bits of The Headache that remain, I try to remember that there are people out there suffering a great deal and unable to find relief. I wish wish wish they can find some sort of answer that helps as much as the ones I found.