I kept taking Neurontin this whole week whenever I started to flare during the day in addition to a dose before bed, and it kept the flares at bay. It's been awesome pain-wise. Energy-wise? Stay-conscious-wise? Be-able-to-get-behind-the-wheel-legally-wise? A little sketchier.
Today I took two doses (300mg) during the day, about five hours apart, and when I got to the end of the day I felt like I was in a dream. I also felt like I could fall asleep instantly if I closed my eyes -- and that maybe my body would impose sleep on me if I didn't give in. So at the last meeting I grabbed a cappuccino, and now I am both wired and asleep.
It's okay -- I know I will be asleep by 10:00 even with the caffeine. Because ---- Neurontin.
I love the Neurontin. It makes my pain go blank -- like erasing red crayon from white paper. As I wrote in a previous blog post (maybe), sometimes I've felt like my pain is the one thing that keeps me in this universe, that holds me in intersection with it. I don't know if that sentiment is too abstract to relate here, but anyway, with the Neurontin, I feel like I step back into this universe wholly. I can sense with all my body again instead of just my vulva.
On the other hand, I just can't take the Neurontin at this frequency. My vulva feels awesome, but even after coffee and yerba mate and a cappuccino, I am loopy. I thought I'd snap out of it, but I still haven't. Still haven't. Still haven't. Still awake, though.
I think what happens is that the Neurontin has a cumulative effect on my, let's say, wakefulness. So maybe the whole nervous system, but what I notice most is that if I take multiple doses for several days, I'm sleepier and sleepier during the day, to the point of today's delirium. I went off the Neurontin a couple days last week to see if it was the reason why I was so sleepy, and I woke up. This weekend, I took three over the course of Saturday, and though I may have been more tired than usual, I did not get helium for a brain until today, after multiple days at multiple doses.
So I'll have to put up with the pain some of the time if I want to stay functional. I've conceded on the caffeine thing -- if I find a med combo that works but that requires the balance of a little caffeine, I'm cool. If I can't balance the med combo regardless of caffeine intake, I have to back off on the dose -- in this case, the Neurontin, and accept sometimes-pain.
The good thing is that the week before my period (which will arrive tomorrow, please?) is the worst week of my month. I shouldn't need this much Neurontin at other times, and once I get a cushion for work (haha, how long have I been meaning to order one? Six months), I'll have even more protection.
As an aside, I know coffee and tea are often bad for vulvodynia. In my case, coffee doesn't really do much. It may make me burn a little more once in a while, but today, on the Neurontin, I didn't notice at all. If anything, it's worst for my stomach (blech!) (and breath -- blech!!).
For me, TEA is my ENEMY. I've searched for a caffeinated tea that doesn't bother me, but I don't think there's one out there. Even yerba mate doesn't leave me alone. Tea gives me pain in my lower abdomen, makes me bloat, and often makes my urethra and/or clit feel like they are harboring a marble-sized ball of super-elevated nerves.
So I'm sticking with coffee. I usually drink only a half-cup anyway, and it's a compromise that allows me to feel better physically and keep up with (and awake for) my life.
Here's a song for you to sing along to, one of my favorites to belt out to my cat: