It’s been about eight and a half years since I’ve had a doctor willing to work with me on pain management. This has been very, very difficult because Lyme disease IS inflammation (among other things) and, to oversimplify, inflammation IS pain. Which means I’m in pain a lot, in case that didn’t come across.
When you have Lyme, finding a doctor to work with is a bit of a nightmare. Most doctors believe it’s a cut-and-dried infection, easily curable with a two-week course of antibiotics. This, however, is not most Lyme patients’ experience, especially if we weren’t diagnosed and treated very promptly (and even if we were, more and more evidence is mounting that a month is safer, or even a quick and decisive I.V. antibiotic regimen). The doctors I’ve been working with are necessarily alternative; simply by diagnosing me and treating me they’re running against mainstream medical ideas about this disease. But, while they’re certainly not stingy with the antibiotics, pain management has been more along the lines of trying to sell me supplements (I don’t like or trust the fact that these doctors always seem to try to sell me supplements, but it seems to be inevitable) meant to reduce inflammation, etc. than prescribing pain medication.
Sometimes, though, a girl needs pain medication. I am tough. Sometimes I blow my own mind with the sheer volume of unpleasant things I’m able to weather. But still, there are days when I’m completely incapacitated by pain, and they’re not exactly rare. I will admit, I want access to something fast and powerful and not at all alternative at those times. As someone who doesn’t drink, doesn’t smoke, and has never abused anything prescribed to me in the history of ever, I think I should get it. Hell, I’ve eschewed all gluten and dairy for almost two years now. Don’t even step to me and question my willpower; it should have apprentices. But it’s really hard to convince a doctor of that, apparently.
And I’ve figured all along that it isn’t really worth it to try. You’d think that after your life has done a swan dive into poverty, disability, and constant pain you’d run out of tosses to give about whether some doctor somewhere writes “drug seeker” on your chart. But that’s not exactly true. There’s a certain amount of vulnerability and emotional energy involved in telling a doctor exactly how difficult things are for you and asking for the kind of help you’ve learned to believe they’re unlikely to give. It’s demoralizing to keep hemorrhaging hope and money trying new medications that simply don’t work. But the pain has been so bad these past few months.
So I’ve been looking for new pain management options lately. There are a lot of medications that aren’t painkillers, per se, but fiddle with one’s neurology to prevent different kinds of pain. These, obviously, are a lot easier to get ahold of than, say, opiates. I was only determined that I would not try Lyrica, since I’ve heard and read so many reports of terrible side effects, one of which is depression, something I’ve been struggling a lot with over the past year anyway. So I got brand new scripts for Ibuprofen 600s (which on a bad day is like restraining a mastodon with dental floss, but it ends up being much cheaper than buying it over-the-counter) and Neurontin, which I later learned is an older sibling to Lyrica.
Once I realized exactly what I’d been prescribed, I wasn’t exactly in a tizzy to start it. But there are several reasons I decided to try the Neurontin after the kind of soul-searching that only arises from excruciating headache pain:
- To be sporting.
- Naked desperation.
- I realized that the dosage of Neurontin prescribed was comparatively tiny, about one tenth per day of what seemed like a modest intake for the average internet denizen. Surely this would minimize the potentional side effects. Surely! Wouldn’t it?
- I was really in a rather lot of pain.
So I swallowed 100mg of anticonvulsant and hoped for the best. An hour or so later, the best was almost certainly not happening. That minuscule amount of medication I’d taken was giving me a pronounced anxiety attack. I wasn’t panicking, exactly, but everything seemed wrong and upsetting– everything. The moon made me want to cry, not in an “isn’t this so poetic and beautiful” way, but in a strange, new “the existence of this moon is hugely frightening and unsatisfactory to me right now, and I have no idea why” way. I couldn’t read. I couldn’t listen to music. I couldn’t do anything without feeling miserable and slightly paranoid. The new med also brought on considerable nausea. All this, without an iota of pain relief. It felt like my headache may have actually gotten worse, but it could have been the baseless terror talking.
Is it still called a “side effect” if the main effect isn’t actually happening? Never taking Neurontin again, even if it begs me. And my pain situation remains unadjusted. Not ideal.
I kind of just wish someone would give me weapons grade painkillers and trust me to be responsible and sane about them. Because I would be.