Another Time, Another Place

Not my Migraine MRI, but what a migrained Brain looks like.

It's Tuesday, December 29, and my father-in-law-to-be is trudging me and my seizure-addled brain 50 minutes in the sleeting, ice-covered roads to my neurologist's office in Kingston. After being made to wait 20+ minutes for my neurologist to arrive (evidently, she lacked my resilience to arrive on time), my neurologist and I reviewed what I could remember of my symptoms, while discussing the results of the MRI and EEG tests I took earlier in the month. The first discussion was of some good news: the EEG was normal. My doctor didn't have much in terms of explanation as to why my seizures persist in spite of these normal results (which should've been a warning sign), but she increased my dosage of Kepra to 750 mg/day (from 500 mg) to help ease the seizures. This has been a difficult transition.

But then we moved on to what my neurologist deemed to be the more important problem - my migraines. Unsurprisingly, my MRI showed that I suffered from migraines. All I could think to say was...

But, to help lessen the migraines, my doctor increased my dosage of the blood pressure medication, and refilled my prescription for the "Excedrin on crack" medicine I take when I feel a headache coming on (so, daily). She ordered an MRI of my back, to investigate the gnawing back pain, and a slew of bloodwork to rule out any sort of parasitic infection (like Lyme) that could be causing this cluster of symptoms. Additionally, she insisted I receive a 24-hour EEG in January, but did not explain why this test would prove more useful than the EEG I already had, the one that came back normal. Lastly, she recommended I see the "seizure specialist" at the medical group, with the earliest possible appointment in March. It only occurs to me now that I will certainly run out of medications before that point, so I don't know what that will mean.

Or, you know, way more.

As I was waiting for her to write up the script for the "Excedrin on crack", it occurred to me that I felt an emptiness throughout my body. What the hell happens now? I was told, at my last appointment, not to drive - is that still a thing? What about a diagnosis, or even a tentative "we're treating you for this"? I had questions that needed answers.

So when my flighty neurologist, who I liked initially but grew to like significantly less during that visit, buzzed out of the office proper and into the waiting room to give me the script, I asked her "what are we looking at here?" Seemingly astonished by the question, and perhaps a bit concerned about the public setting, she was able to spit out that the migraines and seizures are related, but the "seizure specialist" would be able to tell me more after reviewing the results of the 24-hour EEG. I didn't want to have the same reaction as last time, but all I could think was "obviously." Not in any way satisfied with this half answer, I prodded more, asking about my driving. As she walked away, she said it was better not to drive, with the volatility of my seizures "being what it is." Thanks.

I am disappointed by the perpetual state of limbo that doctors assume patients find some comfort residing in. I am enormously frustrated by the lack of direction being provided, and the lack of support given. I was in the ER a day ago, and I still haven't received a phone call from my neurologist to check in. I am going to run out of pain pills (given by the ER doctor, "just in case"), and now have the luxury of having no insurance to mitigate the costs of a refill, if my neurologist ever gives them to me.

Someone better hook a girl up, because Aspirin ain't gunna cut it.

My entire life feels as if it’s in the control of physicians that look at me like some kind of a number on a chart. The impersonality is not a surprise, but the horrendous apathy towards something as devastating as seizures is. Even at the ER, the doctors treated the seizure as if it was some kind of "add-on" to the migraine, focusing attention on eliminating the pain, and quickly  clearing the bed to fill it with someone more sick than I. But everyday, I lose complete control of my body, lose touch with the real world, and go somewhere else where no one can find me. No one knows why, no one is actively trying to stop it, and I have to wait until MARCH to take the next step (and hope it's a legitimate step).

Yesterday, in fact, Thomas tells me I had a massive seizure - obviously, so massive that I lost consciousness. I don't recall any of it, other than "waking up" thinking that I had just fallen asleep. Surprise - you had a seizure. But then, later that night, my entire right hand curled up, contracted, and went as stiff as a board. I don't know how long it lasted, but I remember clearly how bloody painful it was, especially as it slowly unfurled. Thomas spent the better part of an hour massaging my forearm and hand to try to help me regain feeling in my fingertips and relax my aching muscles. Then Thomas left to visit his friends, and I fell asleep, only to be woken up at 4 a.m. with that same horrific back pain that wakes me up everyday. 

I suck at standing up for myself. I'm not a very good advocate for my own treatment. But I really believed in the potential of this treatment center, which came highly recommended. I am getting married in a month, and am constantly swimming in epic family problems, and all I want is to be able to trust that I can stand up and enjoy the happiest day of my life without seizures or family interfering. And after an appointment I treasured like a jewel, I feel no closer to a seizure-free life than I did on the 21st. And every story of chronic illness is speckled with ups and downs, but I'm feeling particularly down at the moment, and hope that I can find an answer before March 2nd.

A New Year's Resolution