Brace Yourself and Drop it Down

"We must learn to be content as we are." - Downtown Abbey

Tuesday night, at some point in the evening, I had a very large seizure. It was, quite possibly, one of the most frightening seizures yet, even though I was unconscious during the episode, and Thomas didn't note anything astonishingly different about it. It was the aftermath of the seizure that presented both familiar (and horrible) and new post-seizure symptoms. Because my body contorted in such a way during the seizure, my wrist was pinned to the wall and bent back for the duration; I believe it's just a sprain, but because it hurts like a MF'er, I'm all braced up.

I'm so freaking sexy. 

But what was way worse, and of alarming note, was the saliva. So, so, SO, much saliva. During the seizure, Thomas said I drooled to the point that he needed to move me, even though seizure first aid suggests you don't move someone during a seizure episode, so I didn't self-aphixiate. In fact, we had to wash all the sheets because of the seizure, which is super fun to do at night. Immediately after the seizure, I couldn't swallow my saliva fast enough, so I had to spit out the extra saliva into an empty bottle of apple juice, which is super attractive.

The post-seizure episode enabled the excessive salivation to persist, even into wednesday and today. I believe that I had a post-ictal seizure, which seem to be known for excessive salivation, along with the other cognitive issues I dealt with throughout the episode and in the post-seizure phase (like loss of focus, zoning out, not being able to articulate/access thoughts, etc).While the salivation grew less intense (as I don't need to carry a spit cup anymore), I'm still finding myself having (to this moment) to constantly swallow, which is worsened by the open sore on my tongue (which I bit during the seizure).  Eventually, I fell asleep, after oscillating between considering going to the ER and subsequently convincing myself not to. 

After a day of enormous shifts in cognitive functioning and mood on Wednesday, consistent with working my way out of a post-ictal seizure, I spent the day coming in and out of headache induced absence seizures. But, I thought conditions were improving. I had the luxury of being able to rest at home, and not climb up the streets of Poughkeepsie to get to work. I even made contact, and an emergency appointment, with my new neurologist the "Seizure Specialist". I took all of these as positive signs of progress, and that was my first mistake. 

That's the thing about a seizure disorder; with every step forward, you can take a few steps back. The balance of life can always be off balance, and that's a great way to describe my day today. I woke up at 6:30 a.m. with an aggressive migraine, and was overcome with fear about what would happen because of it, as my seizures are triggered by migraines. Hence, I took my doctor up on her offer of extending my note out of work until I felt back to "normalish" and rested at home. I took my medications, and the migraine gradually lessened in intensity, but never *quite* went away. And I knew that was a bad sign. 

I had two drop attacks this evening, which aren't necessarily aberrant in my seizure disorder. And yet, these two were vastly different than the usual drop attacks (which is unfortunately not a paradox, because seizures are the new normal). With these drop attacks, it was, as if, someone literally turned the lights off on my brain, and I woke up in pain on the floor not remembering how I got there (but not completely shocked by it either). The first seizure happened at around 6 pm, and I collapsed in my bedroom, hitting my knees and slapping my hands on the tile floor. Hence, my right hand is now even more injured. The second attack, which happened at around 9 pm, resulted in me hitting my forehead on the door frame, causing me to fall to the thinly carpeted floor of the living room, landing on the left side of my neck. I woke up MUST faster with the second seizure, which I suppose is a good sign, but my head is still (still throbbing). 

And that's the end of my three-day seizure survey. I feel like I've literally been through the wringer, and I look like it too. I'm covered in bruises, and will most definitely need to be casted for work tomorrow, so I'll be able to type at the impressive 10 words/minute rate (speculation). And yet, in the midst of all of this chaos, I managed to get my marriage license, grade some student work, and do the necessary evening wedding planning and crafting with Thomas. I also slept A LOT. And watched A LOT of tv. And stared at the dog A LOT. I think things are getting weird between the dog and I, because he seems really over my existence. We spend too much time together, I guess. I'm very excited to go back to work tomorrow, because even though it kills to type with my busted wrist, at least I get to feel like a contributing member of society again. 

Because This is Another Way to Say It

Looking Both Ways

Every two hours in the U.S., a pedestrian is killed by a car. Moreover, "Pedestrians are 1.5 times more likely than passenger vehicle occupants to be killed in a car crash on each trip," according to the CDC.

When we are just young children, (hopefully) someone teaches us to look both ways before crossing the street. After all, as we grow into bigger children, and eventually real-life adults, we find ourselves face to face (metaphorically, of course) with automobiles almost constantly.

The definition of pedestrian is, "a person walking on a road or a developed area". Duh, right? But the adjectival version of the word is of particular note; "lacking inspiration or excitement, dull". I suppose there is something very pedestrian about being a pedestrian; watching the world whiz by in its fast cars while you slog on an uphill battle moving ever so slowly towards your destination. And that's what I'm getting at, the first definition contains an active verb (walking), but being a pedestrian (at least to me) implies a reduction of agency.

Not to be confused with hyperbole, what I'm doing is setting up the metaphor, and luckily we've arrived (kudos for staying the course). When you have a seizure disorder, especially one that remains uncontrolled and undiagnosed, you're ever so pedestrian in both definitions; your life becomes a boring pattern of consistency punctuated with horrific moments of complete loss of pattern, overwhelming fear, and complete desperation. You cannot take the wheel because you're literally not allowed to drive, but also, because you're too afraid to go.

That is what life is like for me. That is what I wish my neurologists that treat me like a number understood. That is what I wish my neurologists nurse understood when she took the five messages for my doctor that weren't returned because my case was obvious not dire enough. That is what the people that believe I am faking my seizures could understand; because no sane, competent, reasonable [insert any synonym for breathing intellectual being] would ever fake such complete humiliation.

Life for me is like crossing an intersection, looking both ways, and knowing that I might still get hit by a car. When you have a seizure disorder, you could have a seizure anywhere - in the middle of the mall, in a public bathroom, in the shower, walking to work, on the train, while cooking, and while at work. Your seizures can cause minor harm (like bruises, cuts, and body pain) or could kill you. And that's just the seizure itself; the environment in which you have the seizure can intensify the injury tenfold, or even be fatal in itself.

Today, I was afforded the opportunity to be completely and utterly humiliated after busting open my lip on the bathroom sink at work, after trying desperately to keep my seizure private and hidden away. Choosing a concrete bathroom was a very poor choice, but I have tried to keep the ugly underbelly of my seizure disorder my dirty little secret,oftentimes compromising my personal safety to protect  my professional reputation. Today, though, with my mouth dripping blood, my entire body shaking, and my head vibrating so violently that I couldn't orient my field of vision, there was no way to hide the truth written literally all over my face.

Today was a painful, painful reminder that my attempts to control this roaring lion of a seizure disorder are laughable imitations of this thing I used to call control. I'm only doing it to try and protect myself from the fear that shadows the seizure disorder - the fear that I could literally die from a seizure, perhaps my next seizure. I could have one tomorrow, crack my skull open, and die. I could have one in three years, and after three years of seizures, my broken and fucked up brain could go so haywire that it never comes back. And that would be the end of my story. Finis.

I came across a meme that said the slogan of epilepsy is "carpe diem." At the time, I thought the meme was a bit amateur. But sitting in my bed with Angelina Jolie lips and swollen eyes after literally sobbing through a conversation with my neurologist's nurse, who had the gall to tell me "not to get upset"; I am overcome by the quiet truth of the idiom's application. If you asked me yesterday what I thought my Tuesday would look like, I would've spouted off the list of tasks I needed to accomplish at work - an afternoon in bed with my ears ringing like Christmas bells and a swollen upper lip would not have even occurred to me.

And so I don't know about tomorrow, or the day after that, or the day after that. And in eighteen days, I hope that I will be able to have a seizure-free wedding, but I don't know about that. And in a few years, I hope to have a seizure-free child, and eventually, a seizure-free life. But I don't know about any of that.

What I do know is that I have the choice to fight back or to feel sorry for myself. Believe me, I don't always fight back. After an afternoon of feeling very, very sorry for myself, I can admit that I am not the strongest or the bravest. But I also know that I wear an invisible bomb strapped to my head, and there's some phantom that holds that controller that I might meet one day, and it would suck very much to have a list of regrets should that day come. Every day is another day where I don't have to kick that guy in the balls, and more importantly, a chance to get better and have the seizure-free life that has to be possible,. So I will do what my wise and compassionate coworker advised, I will be my own advocate (for real this time), bring my hunky hubby and notebook into my appointments, and sit my brain-addled tookus on the chair and refuse to leave until I have the promise of progress. Because every life is a story, and every story is worth telling until the very end - and I am not done yet.

Behind These Palace Walls

Why shouldn't I fly so far from here, I know the girl I might become here, sad and confined and always locked behind these palace walls..."

When I was a teenager, I remember having the crystal clear thought that I wanted to avoid having to drive until I absolutely had no other choice. Well, I was able to maintain this stubborn avoidance until sophomore year of college, until I was undone by one kidney stone while living in on campus and was forced to move back home. After the hurried purchase of a forest green used Cavalier, and a summer of painful driving practice, I took (and aced) my driving test, and was a registered driver in the state of New York.

And it persisted in this fashion for several years; eight to be exact. Eight blissful years of freedom that I certainly didn't understand before I had it. I held the potent ability to make my own decisions about how to spend my days outside of my place of residence. The world truly was my oyster. I could go buy tampons without the embarrassment of asking my dad to drive me.  I could buy myself food, whatever I wanted, because I drive and get it (and don’t feel comfortable eating in front of people if I have a choice). I could purchase wine without the scathing judgment that seems to sweat off my loved ones.

We're both super bored.

Now, the world is my fishbowl. My cat and dog are like two fighting beta fish, and I’ve got a front row seat to the action (it's sometimes the only action I see). And that's mostly hyperbole; my dog and my cat both spend the majority of every day sleeping, and my fiancé spends the majority of his time working, so I spend the majority of my time binge-watching Netflix, and waiting. I scarcely know what I’m waiting for, but I can palpably feel the waiting as it blankets my waking life. I spend a lot of time sleeping, because I'm so tired of the waiting. 

I don’t mean to sound overly dramatic, but it’s a fundamentally changed existence – one that was forced upon me by hideous conditions out of my control that in themselves are difficult enough to cope with. Having epilepsy takes away your fundamental right as a human to exercise control over your life, snatching away time, memory, and sometimes, even dinner plates.

But it also makes you paradoxically agoraphobic and cabin-fevered. You’re always dying to have the ability to act with agency, to drive to places and take back control of your ife, but you’re afraid of people seeing you have a seizure. I deal with this fear, in my own way, every day. I wake up and go to work because I love my job, and because I refuse to give this part of my life away. But when I’m walking from the train station to work, because I have to take public transportation, I’m afraid that a strong gust of wind might stab me with a potential seizure; that the growing winter chill might sneak up behind me and knock me over, and I'll wake up confused, without a wallet, a laptop, or any memory of what happened. 

And I’m afraid of having friends see me having a seizure, because I know how awful it is to have no control, and they wouldn't be able to help at all. I myself would be horrified if one of my friends starting seizing in front of me, and I have seizures. It’s immensely disturbing to witness, as Thomas has said, and it’s incredibly depressing to feel the weight of self-imposed alienation, the alternating love of your friends with the shame of a seizure disorder and the desire to protect them from yourself.

I try to end these posts on an affirmative, if not happy note. I try to boast of resilience in the face of adversity, and courage when faced with fear. But an idiom, like all language, is just a string of words infused with meaning that we create. If you don’t believe in the meaning, or if you believe you are somehow exempt, there is no way to distinguish it from the litter you see along the back streets of Poughkeepsie. And there are days, like today, when I feel like my brain is full of litter.

But, my brain partially feels like litter because, after weeks of prodding and begging, my neurologist in waiting (before I see the "seizure specialist") gave me a new medication, Topamax, that treats both seizures AND migraines. I am super optimistic about the medication, even though the adjustment period is terrible. I feel like I spent this morning with my head under water, and needed about thirty cups of coffee to emerge and think like a functional human. But, I feel different and more cognizant. I have experienced headaches in the two days I've taken the Topamax, but they've dissipated quickly. I had a small seizure last night, but it was quick and comparatively uneventful. While I'm on a slow taper onto the medication, and can absolutely definitely not drink at all at my wedding (because mixing alcohol and the medication can be deadly), this is the best thing to happen to my brain since excedrin migraine however many years ago. 

There is a light at the end of the tunnel, and when I'm not quite so loopy, I'll be able to appreciate it more. Until then, adios. 

Welcome to crazytown.

An Open Letter to my Fiance

For Better or For Worse (post-seizure).

Dear Thomas,

Our wedding is 26 days away. Last night, we picked out the song that we would dance to at our wedding, as we prepared for a week of wedding fueled adventures (like cake tasting, DJ discussions, and our last meeting with the Reverend that will perform the marriage rite at the wedding ceremony). You begrudgingly humored me, in my stubbornness, allowing us to dance our first dance as husband and wife to "Beauty and the Beast". You were indignant, charmingly so, because you assumed everyone would think that you were the beast, and that the song would somehow be a condescending representation of you, despite the fact that most people in the room will be touched, if not crying, by the sheer profundity of both the song and the love that will be radiating from us.

I can get to the place where I understand that your point is valid (or, at least get why you'd think that). I'd rather you not think that you're the beast in this relationship, and certainly not in our marriage. The song is suggestive, and the story is certainly a "tale as old as time"; girl meets beast and fixes him into a prince charming of her dreams (complete with full hair, deep eyes, and all of the muscles). But Disney movies are meant to boil down life into perfectly sculpted collections of tropes, lacking the nuance and complexity of the hard truths that life throws at us. People have joked with us, saying we're a real life Disney movie, and maybe that's true. But we're also VERY real.

My darling, you are not, nor will you ever be a beast. Not to anyone, but certainly not to me. In my epic seizure last night, in which the porcelain plate that held your mom's delicious dinner shattered on the carpet and cut my hand (making me leave a puddle of blood on said carpet), after you held my head still as I foamed at the mouth, and after you and your mother washed my hand as I lay semi-conscious in your late grandfather's recliner - I was so much more of a beast than you could ever be. I've been known to grunt, bleed, and foam at the mouth when I'm having a grand mal seizure - I'm certain rabid dogs are described identically to me in these moments. And yet, as you cradled my head in between your knees, you were there for and with me, even as your best guy friends had dinner with your family upstairs.

I have 26 days to consider how, in our wedding vows, I will be able to articulate the kind of man you are. No one saw this seizure disorder coming, and yet, even as you struggle to express your difficulty facing it with me, I have never once doubted your sincerity, trust, or concern. Never once have I felt judged or unsafe - I felt nothing but love from you, even when I was literally the least convenient person to be betrothed to.

I cannot tell you how important a support system is to battling a chronic illness. On Friday night, I literally dreamt about handing a blade to someone I greatly dislike and asking him to slit my throat because the pain was brutalizing me without any promise of relief (after taking Percocet, Bubital, and Excedrin throughout the course of the day). But then I remembered that I had someone worth fighting for, and a future that I could believe in.

If there is a beast in the room, dancing with us after we vow to love one another for the rest of our lives in sickness and in health, it will be my seizure disorder. And it will still be a part of our lives on February 7th, and it isn't something we can just will away. But together, because of love and courage and the promise of a future, we will fight - and there is no one else I'd rather fight for than you.

I love you Thomas. I can't wait to be a Weikel.

Love,

Your Brain-Addled, Smitten and Super Excited Fiance.

P.S.

There's More Love Out There

"Smile, the Worst is Yet to Come...

...We'll be lucky if we ever see the sun."

"Studies suggest that epilepsy fails to come quickly under control with medicines in about one-third of cases, but the true frequency depends upon the definition of uncontrolled."

 The above quote is just a snippet of a much longer article and much larger conversation about what 1/3 of patients diagnosed with epilepsy experience called "Refractory Epilepsy" (see below for the link to the article). According to the medical discourse surrounding epilepsy, it is certainly the worst form of epilepsy (aside from the pseudo diagnosed/waiting in limbo kind that I'm currently experiencing); the type the article labels a "heavy burden."

Essentially, Refractory Epilepsy is diagnosed when an individual's seizures are not controlled by medications. The bad news: only 5% of those diagnosed with Refractory Epilepsy will get better (through either finding a medication that works, or alternative therapies). This form of epilepsy is also called "drug-resistant" epilepsy, even though a diagnosis can be made as early as after only two failed medication therapies. I myself would call it, "drug-avoidant" or "I can't get in to see my doctor until freaking March."

Not to bore you with rhetorical analysis, or betray my growing need to be defensive, but the article then makes an interesting tonal shift. Moving from a predominantly expository/informational article (with an argumentative undertone that posits that only the discovery of better medications and a cure will truly help those with any form of epilepsy), the piece grows investigative (and dare I say, interrogative) in its tone and content. In my opinion, the article becomes a somewhat aggressive critical examination of any epilepsy diagnosis. In my experience examining this discourse community, this shift usually indicates a lack of understanding of the illness, using the argument that you're just incorrectly diagnosed so doctors don't have to admit that they don't know what's going on. The article even goes so far as to use this sinister anecdote,

"Imagine coming home at night after too much partying, and finding yourself unable to unlock your front door. One possibility is that you are at the wrong house.  Another is that you are using the wrong key. Or you really may be locked out. Perhaps someone inside has engaged the deadbolt. Refractory epilepsy displays three similar categories."

Okay, in fairness, seizure activity does not necessarily mean an individual has epilepsy, that much I will admit. And yes, as the author suggests, other conditions can mimic epilepsy and cause repeated seizures. Citing that 13% of patients in England are incorrectly diagnosed with epilepsy, Dr. Fisher (the article's lead author) makes a valid point - a doctor's understanding of a patient's condition, and the choices made by the treating physician in treatment therapies, are penultimately important in that patient's recovery.

Hence the quotation that starts this post - the definition of "uncontrolled". It's an interesting and thankless riddle to ponder, especially in the wake of a seizure disorder. Having even one seizure replaces bodily control with some horrible other thing - a devastating intellectual and physical loss of the self you've become. Hence why so many individuals with seizures experience psychological disorders, like depression and anxiety. In a world in which we have to take on so many roles each day and perform such a complex juggling act of professional, mother, student, wife, etc. - the loss felt by an individual with seizures is amplified by the fear of what is necessary to get through each day.

For the last three days straight, I have experienced UGLY seizures - the ones where I lose control, lose consciousness, and lose chunks of time (hence why I haven't been able to post a new post in some time). It seems as though my condition is indeed not responding to the medications, placing me in a perpetual state of fear, and forcing me to investigate Refractory Epilepsy. The migraines and back pain persists even with the "excedrin on crack" (and since my seizures and migraines are interwoven, with uncontrolled pain comes uncontrolled seizures). I am trying to limit the use of narcotics, since I don't have many Percocet left, am fighting for health coverage for this month, and am not sure that my doctor will give me a refill, since I had to follow up with her nurse twice since my ER visit, and have still not heard back.

It's past 5 a.m. I've been awake writing this post for over an hour because I wake up in pain at 4 a.m. every day now. I sit in my old man recliner, sometimes forcing myself to wrestle with the pain and try to sleep, sometimes just staring at the clock as it draws me closer to the start of my day. But today, I choose to ponder this idea of "uncontrolled". If control is an illusion, if that idiom bodes true for those of us not dealing with "uncontrolled" seizures, then perhaps "uncontrol" is just as much of an illusion. Perhaps we are all just waiting for the right thing to miraculously appear when we lose control, so that we can convince ourselves of the fantasy, in a world that demands rigidity and self-control. As zen as it may sound to abandon the fantasy of control and reject its power, perhaps I am only able to be so zen because I've run out of energy to feel anything else. Perhaps I am only able to accept "uncontrol" because this form of epilepsy, refractory or not, is forcing my hand.

Go Here for the Whole Article

Time is inching me closer to the start of a day at work, where I will be expected to perform pretty complicated invoicing, while planning an event and developing a social media schedule for a client (along with sundry other tasks). This does not include making phone calls necessary for the wedding, which is less than a month away. And teaching, grading, communicating with students, all while heavily medicated and exhausted. This is a daunting list on "normal" days, which in themselves are something of a chimera. But today, after a seizure last night, followed by 5ish hours of sleep - I'm going to make it work, because that's my job. But my chilly walk to the train will inevitably feel like a great accomplishment. Until then!!

"I Don't Even Know What that Is" (Migralepsy)

"What the mind can conceive, the mind can achieve." - W. Clement Stone

Imagine, sitting in the ER as NYE rings in. An attractive male nurse softly enters your room to administer a plethora of medications, ordered by the on-call MD, to treat a raging migraine. You disclose, to said nurse, that you had a seizure that accompanied the migraine hours ago, and that you have a long history of migraines (but not so long a history of the seizures and migraines in their simultaneity). You state that you're being treated for a possible diagnosis of migralepsy.The nurse, in an understated Southern accent, softly admits he has "never heard of it" while shaking his head and chuckling out of awkward bafflement. You still think the nurse is sweet, and you still joke around with him, but you start to resent and insult him in your angry, migrained head. A nurse that has never heard of what I'm being treated for - the irony in the epigraph should not be lost on the reader. 

That's what it seems to be, kiddos. I can't say definitively, one way or another, if I do in fact have migralepsy - mostly because of the stalling nature of medicine that is a hallmark of treatment. Like the bureaucracy we've come to love within our government systems, healthcare itself runs remarkably slowly, with the very nature of progress beaming like some sparkly jewel far off in the horizon. Every day you slouch towards Bethlehem, but wind up on your late grandfather-in-law's recliner, dreaming of that exquisite moment of "knowing."

But, if we just pretend as though what my auspiciously flighty doctor meant to say, when asked the question "what are we looking at here" is the answer of "Migralepsy" (and not some half-assed suggestion that the seizures and migraines are linked), then let's explore this even less understood  and recognized condition further, since it appears as though the only way patients become informed is by pouring their own time and energy into the process.

Let's take a few steps, and many years back - all the way back to 1990. Save yourself the math...I was three years old. That's when I had my first migraine. True story: this is the youngest age that a patient has reported a migraine to my neurologist. I remember very little about this particular migraine, and had absolutely no understanding as to what was happening. I just remember wailing in agony, contemplating death (for what was probably the first time, as I was literally a toddler), and throwing up with voracious effort until I finally fell asleep. This was the beginning of a childhood, adolescence, and adulthood packed to the gills with migraines. 

Of course, like any chronic illness (well, maybe not ANY, but at least most) there are moments of reprieve. These moments seem like bliss, but are actually a carefully disguised form of hell. They would happen annually, and last a series of months, and remind me what it was like to live a normal, pain-free life. And then, one random day, it starts up again. I remember chamomile tea packets on my eyes, ice packs of all shapes and sizes on my wrist, failed attempts at Advil and Naproxen, an even more epically failed attempt at Imitrex (the nose spray, which burned my sinuses AND the kind that dissolves on your tongue, which made me immediately vomit), the MRI's, the Migrelief, and the diet free of additives of all varieties. None of these worked to prevent the migraines, but the ice packs between my wrists and the chamomile tea packets on my eyes worked to alleviate the fury of the migraine.

And then came the miracle drug - Excedrin migraine. Absolutely nothing worked like Excedrin (except perhaps a beheading). I took it almost daily - twice daily if we consider the partner miracle drug- Excedrin PM. I could take either one of the two (although regular Excedrin had a slightly higher success rate) and be migraine free in about 1/2 hour. While timing is everything, and no amount of Excedrin would stop a migraine in it's full form, I found something that offered relief. I finally had a preventative solution. And that solution sustained me for years.

Flash forward to November of this year, to my first seizure induced migraine. If you've read earlier posts, you know that I struggled for most of my childhood with both sensory processing disorder (and was absolutely terrified of loud noises), and had occasional seizures (that became more frequent as I hit my twenties). I would say, since I turned the big 2-0, I've had a seizure each year (give or take). But in November, all of that changed. My first seizure brought with it weekly, then bi-weekly, then nearly daily seizure-migraine combinations that the mighty power of Excedrin couldn't touch.

I've spent more time in a dark room than Batman.

So now, here we are, facing down Migralepsy. If you look at the word, you can essentially assume what it means - it combines epilepsy (which is the presence of more than one type of seizure in a measurable period of time) with the presence of migraines that are connected to the seizure activity. 

According to headacheandmigrainenews (the most reliable website I can find, notwithstanding wikipedia), Migralepsy is when a "seizure occurs during or after migraine attack.  This refers specifically to migraine with aura.  What seems to happen is that the migraine attack begins with a visual aura.  Then the seizure follows, either along with the headache or even afterwards."

But an important point this article makes (find it in the Migralepsy Resource page), one that I find dubious and frustrating, is that the overlap between migraine and epilepsy symptoms creates a confusing network of possibilities, including a barrage of other conditions with confusing names like;
"hemicrania epileptica" (the F...?). I certainly experience auras, which I may have mislabelled as simple photosensitivity, and have a nearly continuous headache, but I  worry that the research is so sparse regarding the condition that the diagnosis seems unnecessary. What's the point of being diagnosed, even tentatively, with something so rare, that so few people understand and can successfully treat? 

I know that there are other's out there like me, slogging our way through social media to try to find the resources unavailable in other places online and in Libraries. I will continue in my journey to find answers, and as I do, I will continue to create resource pages of relevant, and credible articles (etc.) that I find. I hope these will be of use to others. Moreover, I will continue to share my blog among the migraine and epilepsy support communities, to try and build a network that can profit from the work I'm doing and the information I'm gathering.

But reader, we are on the cusp of something here - something new, scary, and that needs to be better understood. I am asking, no, IMPLORING, for you to help get this blog and the resources it provides "out there," especially if you know someone that needs it. Together, we can make changes to help people that typically suffer in silence, and help the caregivers and physicians to increase the quality of life, and even find a cure. 

All of my thanks, and all of my love. 

Here's a Bit of the Funnies for my Fellow Migraneurs

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