Monday, March 21, 2011

The Challenges of Having Neurontin as a Personal Hero

Last week I said I thought I was starting the typical week-long pre-period flare. But when I took more Neurontin, the flare went away. Was the flare pre-period or post-sex?

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:


  1. Good God, woman! You're got to make getting a cushion a priority. If I didn't have mine (one for car, one for work/other) I'd be having flares everyday. My cushions make such a difference.

    Also, the Neurontin is notorious for sleepy side effects. Have you tried amitriptyline? It's a little less sedating and I take mine at night before I go to bed.

    Anyway, at least get a cushion. You're not giving your bits a fighting chance without one.


  2. Ha, but I have perfected the sit-off-to-the-side-on-your-calves position, regardless of the chair!!! Yeah, I went to to order one the other day and they were out of my size. Thanks for the prodding; I will look again.

    I haven't tried amitriptyline yet. I know it's not like SSRIs and that the pain dose is small, but I've had bad experiences with anti-depressants (suicidalness), so I'm wary of it, though somewhat without grounds to be so.

  3. Actually, amitriptyline is an TCA-tricyclic antidepressant, which has been widely replaced with different SSRIs SNRIs, as they are somewhat similar, however it's just as effective depending on the condition. You should talk to someone about it because I've been on Neurontin and it really does knock you on your butt, while amitriptyline is used (off label) for vulvodynia and PN. Of course you should discuss this with your physician first. Incidentally, I have my amitriptyline written me by my shrink, as a psychiatrist-in my experience-will really know their stuff about pharmaceutical effects, interactions and benefits. If you have had bad experiences with antidepressants you should talk to a psychiatrist to see what may or may not work for you in treating your V/PN.

    And yes, get that cushion! lol Like I say, I have a couple of them, but the Carex Health Brands Coccyx Cushion MEM Foam by far does the best job for car, work, home. It's big, so not all that easy to cart into a restaurant, but for those occasions I have a smaller cushion, however I can't sit near as long pain free on those. I can sit for hours at a time on the Carex cushion. :)