And so, when I check in with my neurologist at the headache center about a month after my patch procedure, and she suggests coming back in for another round of infusion treatment to help ease the pain of this new constant post-leak-patching headache, I don’t think about how the word infusion means the pouring in of liquid, about how the process involves introducing bag after bag of saline and liquid medicine into my veins. I don’t think about how right now this pain is happening because my veins are already full, engorged and stretched to their limit, how it’s happening because everything is at full capacity. Instead I think, pain relief, and so I say yes, and I schedule the appointment. I return to the infusion center, I sign all the papers, I approve all the medications, I climb into the comfortable recliner and have prewarmed blankets laid over me, I am hooked up to the IV.
Within minutes of starting, I feel worse. My head feels swollen, packed with cotton, stuffed to the breaking point, and I am nauseated, eye-blurred, forehead-stabbed. I adjust the recliner so that I’m tilted at an angle, my head elevated, but the pain gets worse. I call the nurse in and tell her I’m feeling bad, that whatever they’re giving me is making me feel terrible. She looks confused and somewhat dubious as she tells me that so far all I’ve gotten is saline. Saline. A part of me makes the connection, a part of me thinks Hello, that is salt and water, and isn’t salt the enemy right now, doesn’t salt make everything terrible, doesn’t salt give you a headache now and make your head try to explode? But then the Benadryl and lorazepam start to kick in and I become very sleepy, and I tell the nurse, “I don’t think I can do this, this isn’t helping,” but I’m also drifting off, and I hear her tell me that we can check in after this round of treatment, that we can reevaluate at lunchtime, and if I still feel awful, we can stop.
By lunchtime, even with all the pain-fighting medicine coursing through my veins, I am miserable. My high-pressure headache is higher and more pressurized than it has been since the day after I was first patched, and I am beginning to realize what a mistake this was for me to do this. Why did my neurologist think this would help? Why did I? I sign myself out of the infusion center at lunchtime, woozy with pain and pain medicine, and cancel the next day’s appointment, the second part of the two-day process. Once home, I post to the rebound high-pressure leaker group, text with my leaker friends, “Oh yeah,” they all agree, “you’re in rebound high pressure right now! That kind of infusion thing will only make your rebound headache worse! Saline! Pumping fluids into you when you’re already sensitive to changes in fluid pressure!” If only I’d consulted them before I’d decided to do this. If only my neurologist had understood this. “Take an over-the-counter diuretic,” they advise me. “Drink dandelion tea.” “If you have to lie down, use the wedge pillow and keep your head elevated at thirty degrees.” “Use an ice pack.”
I do these things. I drink dandelion tea, I wear my ice turban; I stand, since sitting or lying down makes it worse, even though standing is still exhausting; I use my wedge pillow when I lie down. I quibble with the insurance company, which has billed me for both days, even though I left after half of one. It takes weeks for this infusion, this surge, to resolve, for my body to calm itself. I have rebounded, and this time the bounding part of it happens in slow motion, suspending me in midair, at the altitude of pain.
Gradually, the rebound gains a rhythm to it, begins to have its own ebb and flow over time. The infusion-induced spike fades back to the levels of my post-patching rebound high, and gradually my rebound high-pressure peaks become monthly, tied to my cycle, rather than daily—a week or so of terrible face headache and pressure fading back into the new normal of low-level face headache and pressure.
It’s comforting, in its own way, as nerve-racking as it is to have this constant anxiety of wondering if today will be the day that the pressure will be too much, will rip through the fragile reconstitution of my dura, will tear through the torn place. It’s comforting because, as worrisome as it is, as long as I have the high-pressure headache, I know that I’m not leaking. The rebound high pressure is proof that it’s working, that the seal is holding, that the leak is patched, however tenuous the patching may be.
Eventually, over time, this rebound high pressure will dissipate, the daily peaks becoming monthly peaks, becoming every-few-months peaks, becoming peaks that exist only when I forget and sit too long, or have too many Diet Cokes, or eat a too-salty thing.
Eventually, this rebound will align itself more with its proper definition, which is: to bounce back.
31
When you first begin piano lessons, time is a strict thing. The metronome is a looming wooden triangle on the music rack, a strange-looking clock, its one thin arm marking time by swinging faster or slower depending on where the adjustable weight is slid on the pendulum, a satisfying yet ominous, demanding, mechanical click emanating from it as it sets the tempo. Or it is a small rectangular plastic box leaning against the score before you, a dial to set the speed, a blinking light and digital click sound to alert you to the tempo. Or, now, it is an app on a phone, purely digital, a simulacrum of the old clockwork device, a visual thing, a movie of a metronome, a screen you slide and tap to set the pace, the volume. Whatever form
