My headaches are bad. I’ve been in an unexplainable flare-up
for about three weeks, and they are stabby-bad. They feel like a screwdriver
has been plunged in at the base of my skull, and the tip is coming out my eye. There
is no rhyme or reason: stress or not, enough sleep or not, sugar/caffeine/diet
coke or not. It’s pretty frustrating.
In late August, I did the lidocaine infusion in the hospital.
I went in feeling optimistic, brought along lots of school work, books, entertainment,
and had every intention of making it work. I had a PICC line put in my arm and
got loaded up with tons of lidocaine and other stuff. My headache went away
pretty quickly (I’d come in un-medicated, with a good seven or eight on the
pain scale). But the lidocaine made me simultaneously exhausted and want to crawl
out of my skin. I couldn’t read, watch TV, or stay awake for visitors because
of that, and I couldn’t sleep as much as I wanted to because nurses were in
changing my meds or giving me shots every four hours. Everyone was incredibly nice, but I was miserable. The freaking smell of hospital food. . .
Anyway, they let me out after 48 hours (they want you to
have at least 24 hours headache-free) with a stack of prescriptions to try. They called it a success. Once I got
home, I had four days without pain before it came back with a vengeance. Not a success.
Since then, I’ve done another round of Botox (useless, but
now my doctor says it may take four rounds before it works), tried all the new
prescriptions (they have failed), and had nine visits with chiropractor number
7 (didn’t help). I’m getting towards the end of a tough semester (just tons of
grading—awesome students). Most days I get by with Vidocin, but some days it doesn’t
work, and those days are brutal.
I have mixed feelings about narcotics. First and foremost, they
are saving my life. There’s no way I’d be able to work if I didn’t get a break
from head pain. And I admit, the days I don’t get a break get very, very dark. I
don’t think I could stay alive if this pain was constant. I don’t think many
people could. In addition to the pain, I am just very angry and caustic. It’s
very hard to be in the world. I want to flip out on people for their loud
voices and bright headlights. I can’t think straight, can’t grade, and just
want to be in the dark silence, alone. So thank god for Vicodin. I have
virtually no side effects from it, no loopiness or sedation, and I can function
very well.
But then there’s my sobriety and an inferred judgement from
those unseen, even though I’ve never once taken these drugs for anything but
pain. The idea of judgement bothers me less and less as I see how essential Vicodon is to my quality
of life, and my livelihood. But in the last year, Vicodin became
a schedule II drug, and doctors are not thrilled about prescribing it. I understand
that in recent years, the rate of ODs from pain meds has skyrocketed. I understand
that we need to get a handle on it. But as a legit pain patient, I resent having
one doctor in a practice that “doesn’t believe” that narcotics help headaches
like mine, another doctor who “might be willing” to prescribe them for me, and the third who actually prescribes them does so begrudgingly, as though she’s doing me a big,
fat favor. I have pain. These are the only meds that work. What the hell else am
I supposed to do?
But I don’t want to take narcotics forever. So I’m looking for
more treatments. I have cervicogenic headaches, meaning my headaches start from
problems in my neck, but the actual nerve condition I have is occipital
neuralgia. The narrowing/bone spurs/arthritis in my neck impinges on nerves
that send signals to the occipital nerves at the back of my head. My actual
pain is about one inch in diameter, the handle of the screwdriver, and then it
radiates to behind my eye.
There are neurosurgeries that may help. This is considered a
peripheral nerve disorder, along the same lines as carpel tunnel syndrome. My
doctor at Penn Pain Management said that if Botox didn’t work, he wanted to
implant an occipital nerve stimulator. Basically, it’s an electrical lead placed
over the nerve, connected to an implanted battery pack in my chest. I’d have a
remote control and could sent a current over the nerve to block the pain. I’m
in a Facebook group for this and I read with interest many people’s accounts of
what a miracle it is. But I also read about infections and slipping leads.
Then there’s nerve decompression surgery, where they pull the
nerve out of the muscle in the back of the head so nothing’s impinging it. I’m
a good candidate for both because I’ve had lidocaine injected into the
occipital nerve on several occasions, and it has successfully blocked the pain
for a few hours.
But these procedures are risky, and if they fail, they can
make the pain worse. The rhizotomies I had last year where they tried to kill
the nerves by cauterizing them have absolutely made the pain worse—much sharper
and more intense. So that scares me. I’m going to have a consultation with a
neurosurgeon in a few weeks so I can get more information.
But in recent weeks, I’ve had to take more Vicodin to
control the headaches. If I take doses too close together, I get seasick and
that’s such a gross feeling, dizziness and nausea, actually worse than pain
sometimes. I could step up to a stronger narcotic. My primary care doc thinks I
should do an extended release drug, or a fentanyl patch. But then what—the pain
gets worse and I take stronger and stronger drugs? Hard to imagine.
Dear reader, what would you do if faced with such a
decision: surgery or narcotics? It would help me to know what you think. All of
this is so wacky and strange. I can’t believe I’ve tried all these treatments. I
can’t believe all the drugs I take. I can’t believe this is STILL going on,
that hitting my head four years ago is still fucking up my life. It makes me
feel more normal and grounded somehow to hear my friends tell me what they
would do if they were in my shoes. So let me know!
