After hearing from the boyfriend about all I was doing during my blackout, I called the 24-hour nurse phone line provided by my Medicaid. By all accounts, it appears that I was having a non-epileptic partial complex seizure, or even a temporal lobe seizure. For chrissakes.
Inventory of my emergency pill bottle found that I had not, in fact, taken any of 1.5 Soma tablets I keep in there. Nor had I taken any of my other prescription pills that are in there. Possibly, I may have taken an Extra Strength Bayer, or an Extra Strength Tylenol gel, but that was it. My pill bottle was in my pocket, it turns out, because when the cop saw me he prompted me to go through my purse to find my keys. My keys weren\’t there (I\’d clipped them to a belt loop on my trousers and forgotten), but the pill bottle was. It appears that was looked at (it\’s a prescription bottle with my name and address on it, so hey–not a problem) and then I put it in my pocket.
I don\’t remember leaving the bar. My last memory is of talking to the bartender and manager about the bar\’s web site (or lack thereof). Then, nothing. I don\’t remember the cop. I don\’t remember getting home. The next thing I actually remember is being in the shower at nearly six in the morning, wondering why the hell I was in the shower and why I couldn\’t remember getting into the shower or anything else.
Boyfriend opened up my apartment door to me and the cop, who asked if I lived here. He said yes, the cop handed me over, and bf looked after me. When I got home, I had my cellphone and Mace in one hand, and was holding my purse in the other. My keys were still clipped on to my trousers. (As an odd aside, when bf told me these, I suddenly got this one flash of a quarter second of a memory: me sitting in the cop car\’s passenger seat, holding my Mace on my lap, and thinking, \”Shit, I\’m holding Mace and sitting next to a cop, and I think this Mace sprayer is actually illegal here–shit, shit, shit.\” But I don\’t remember a single other thing but that!)
I don\’t know how I pointed out where my home was. The cop may have got the address from my pill bottle, which I may have somehow confirmed. I may have pointed the way home, which wouldn\’t have been that hard (straight, right, left, straight, here). I did get out my phone to call the bf, but the call went to voicemail. There\’s a 10 minute call now preserved there, with me humming/muttering something to myself under my breath. The intonations and sounds are all one pattern, so either I was singing to myself or I was telling myself something that was seemingly worth repeating. A minute or so into the message, the cop can be heard saying \”Do you live here?\” and me replying in a firm but amused and slightly annoyed (I know that tone of voice; I use it in cognizant life when I\’m feeling a combination of lack of patience and condescension) voice, \”Mmmhm.\”
Apparently, once the cop carried me up the stairs and put me in the care of my bf, I started muttering \”He hates me, he hates me,\” which my bf thought I meant about the cop. Dunno. Once inside, I kept up the unintelligible sing-songing, but also started saying some weird shit. I kept repeating \”twenty blocks, twenty blocks,\” whatever that meant. And I kept insisting that I didn\’t actually live here, that this wasn\’t my home. I was also talking random stuff about how it was \”____\’s fault.\” BF thought I was confused, and meant the bartender from the bar that night. But I apparently said \”no, that\’s John, I mean [someone else]. He did this to me last year, and it\’s just like that. It\’s all his fault.\” I have no idea what I was talking about.
But on top of the weird, nonsensical speech, I also had no muscle control. I had to be carried around the apartment and undressed. I couldn\’t sit up; though I kept trying, I always fell forward and then couldn\’t move without assistance. I couldn\’t lift my limbs when I wanted to. BF put me on the toilet three times, because I kept saying I needed to pee, but each time I was collapse on top of myself on the throne, saying that I was trying to push but that I couldn\’t make it come out. The last time of sitting there, trying to pee, was when I started vomiting (all over my legs–fun). Prior to that, I was continually clasping and unclasping my fingers into my palms — bf he couldn\’t get me to stop. While doing that, I kept bringing my arms up to my chest and making motions like I was trying to unclasp a front hook bra, except I don\’t own any and wasn\’t wearing a bra. He said he couldn\’t get me to stop that, either. I was also gnawing on my lower lip with my teeth — actually gnawing — which is now evidenced by the scabs under my lip from my teeth grinding in. After I vomited, bf tried to get me to drink water, but he said I did so with much difficulty: exaggerated motions of the mouth and swallowing.
He said that the whole time, I was very pale in the face, which is unusual, because I\’m usually red (rosacea), particularly when I\’ve been drinking. I wasn\’t sweating, the way one does when sick from alcohol. And I know what a hangover feels like, and I didn\’t have one at all yesterday — no headache, no nausea, no dizziness, no aversion to food. Even when having vomited, I still feel those the next day if I\’ve had too much to drink, so I don\’t think it was that.
I\’m loathe to say, \’hey nurse, yeah, maybe it was a seizure,\’ but who knows? Because I wasn\’t taken to the hospital and hooked up to an EEG for brain monitoring during the episode, so it\’s impossible to now say definitively. And because I have new health insurance, I don\’t have a doctor yet who can send me off to get tests done (yay, more CT scans and MRIs of my brain to look for lesions — haven\’t had those on my head since I was 14). Won\’t be happening until next week.
This isn\’t the first time an attack like this has occurred. Okay, usually it\’s been cataplexy or a CFIDS quick-onset flareup, but I remember clearly one time in the winter of 2003 where something similar to this happened. It happened in the evening, and I hadn\’t been drinking. My family, doctors, and myself attributed that to being overmedicated at the time, so my doctor started decreasing some of the likely culprit medications. But I\’m no longer on any narcotics or sleeping pills, I\’m now on a moderate dose of the same anti-convulsant that I was on before, and I was still on (was discontinued by my doctors yesterday, but that decision had been made last month) the stimulant modafinil.
Now, perhaps because I had a severe lack of sleep Sunday night/Monday morning, then had taken 500mg of modafinil on Monday, my body wigged. This is all conjecture from me, a non-educated (as in not a nurse, doctor, or in training to be one) patient, but maybe my body was attempting to drop into a state of narcoleptic cataplexy, but couldn\’t due to the high level of modafinil still in my system. I don\’t fully understand the chemical compound reaction to the biological makeup of everything involved (dammit, I need that Bachelor of Science degree, at the very least), but perhaps there was still enough modafinil working in me to cause the cataplexy to misfire. I don\’t know, but I desperately want to know how these things work.
As an aside, my Johns Hopkins sleep doctors conferred with my psychiatrist after my appointment last month, and I\’m actually discontinuing the modafinil, as it\’s not working as well as it used to. (Additional interesting aside on modafinil: it\’s been linked to personality changes in those taking it. Those changes include the patient becoming \”very robotic, very rigid with suppressed emotions and little empathy,\” hence the street name for modafinil — zombie. And yeah, I\’ve definitely been like that while on it, so I can\’t say I mind going off it.) I\’ve been switched to Concerta — ie, time released Ritalin, which in the time release form is used for treatment of narcolepsy and CFIDS. Concerta\’s doses are much larger than Ritalin\’s, too.
I\’m intrigued by this medication switch, because my brother takes Strattera, a non-stimulant ADHD drug, for his ADHD and learning disabilities. He\’s apparently had quite a bit of success with it. Strattera is a NRI (norepinephrine reuptake inhibitor). My uncle is also on an NRI, and has been for more than ten years — Wellbutrin. It helps him quite a lot. I take a chemically similar type of medication, a SNRI (serotonin-norepinephrine reuptake inhibitor), Effexor XR. While I\’m a mess without it, the side effects aren\’t pleasant, and I\’d like to change.
Effexor, however, is highly recommended for narcoleptics, so until the narcolepsy is under control, my doctors don\’t want to start messing around. I really want to switch to the NSRI (norepinephrine-serotonin reuptake inhibitor, which is different from the SNRI as the NSRI equally inhibits the reuptake of both norepinephrine and serotonin, whereas the SNRI works more for norepinephrine than for serotonin) milnacipran, as it\’s the first and only drug to so far have been proved to benefit the mood, pain, and fatigue of FMS patients. But nine years after it was made available in Europe, it STILL isn\’t available in the USA. Makers Cypress Bioscience and Forest Labs completed another Phase III clinical trial for the FDA last year, and the results are supposed to be officially released this year. Soon, please, soon!
But that brings me back to drug reuptakers, and why it is that classes of drugs that have some focus or an exclusive focus on norepinephrine seem to benefit so many people in my family — to the point where many of us can\’t function without the aid of these medications. What is it, exactly, that differentiates our biochemical imbalance that way, instead of another way? Is there an underlying factor/common cause that has not been addressed? My uncle and I were both diagnosed with bipolar (as were my sister and father, but they use(d) different medications to varying degrees of success), while my brother and I both have diagnosed LDs. I\’m wondering if there is a shared molecular marker (biomarker or genetic marker) in there somewhere, one that likely hasn\’t been discovered yet by genetics or biology, that waves its little metaphorical flag in the brain or on the genome and says \”gimmie gimmie norepinephrine!\”
Um, for the record, I fucking rue having dyscalculia. I don\’t feel any sort of \”oh, woe is me, I\’m totally fucked because I\’m a gimp\” feeling related to narcolepsy, CFIDS, or any of the rest of it, because I think those can all be compensated for and treated in some way. But not being able to grasp simple math — that shit is holding me back. I think I\’d make a damn fine research scientist if it weren\’t for the sheer inability to be able to do anything with numbers. Hell, I can\’t even grasp pre-algebra, so how would I make the required calculus courses needed to take the science classes? Dum dum dum. The social sciences it shall be for me, then.
