I was out of the house from 8 am until 9:30 pm between my extra early neurology appointment, being a grad student, and taking care of getting my new prescription from the pharmacy, then I cooked dinner for me and my husband and worked on prepping for the classes I teach tomorrow (starting at 8:45 am). I'm exhausted but not sleepy, which is why I'm posting this right now instead of trying to sleep. This is brewing and I want it out of my system.
I've talked about my headache on here before. To recap, it started one day (late February 2008) and never went away even for a moment. It was diagnosed as migraines, then later diagnosed as new daily persistent headache. I was dumped by two different neurologists who told me they don't know anything else to do (we did try a lot actually) so there's no point in trying anymore, I have to accept that I'll be in pain for the rest of my life. Accepting that the moments of January 2008 and most of February 2008 will be the only moments in my adult life that I won't be in constant pain, and that I took it for granted and now it's gone. I've struggled with accepting it, a lot.
Well, my third neurologist is the first I've had who is anything within two decades of my age, and she isn't willing to give up on me. It's awesome! But I'm also really afraid to have hope. Having hope means when things don't work, you get crushed down even harder than you were before. You basically go through trying to accept that your life will be pain and there's nothing that can help you all over again.
Having no hope is a terrible place to be in, but having hope again for the first time in a while is also a scary place. Having no hope just feels "safe". But we identified not one, but two things to try:
1) Taking depakote in addition to my current medication, doxepin- which brings my pain down to a level where I can be a functional human being, but also we got to point in the dose where increasing the dose just gives more side effects with no added benefit. I took the first dose just now. I can't swallow pills so I'm taking it in sprinkle form like I did with Topamax. I mixed it into apple sauce and it was fine for just one tablet, but I'm going to be working my way up to six so I think I'll need pudding by then.
2) Trying to get insurance to approve Botox injections again. Last time they denied me because they said this particular neurologist hadn't seen me long enough to have enough data to prove it would be likely effective. It's a year later and she thinks we have enough additional data to be worth a shot. In some people it means up to 3 MONTHS OF NO HEADACHE!
You guys, I have trouble imagining what a second without pain feels like. What would it be like to not have a headache for 3 months? How much more could I achieve and how much better could I sleep? Like I want to hope but I know that it has to get through insurance and that's going to be tough. I can't bring myself to completely crush my own hopes though. I feel hopeful. I'm just afraid the new drug won't work and the Botox won't get approved, or it'll get approved and turn out it doesn't work for me.