What's a Rescue Medication?

I keep referencing rescue medications. Turns out not everyone knows what that is! Not everyone with epilepsy needs one, and there are rescue meds for other conditions-nitroglycerin for angina, for example.

For me, a rescue medication is something taken as needed to stop clusters of seizures. I try to take half a clonazepam during an aura since most of my seizures bring company.

That doesn't always prevent a seizure, but it seems to reduce severity and duration of what does happen. Having a rescue medication has made living a very active life easier because it can be the difference between a cluster of 3 and a cluster of 30 seizures.

Epilepsy and Gymnastics

This one is another "in my experience" one. This is in no way shape or form medical advice, and in fact I have met doctors who think that my choice of sport was evidence of a subconscious deathwish.

I've been participating in some form of gymnastics or another for years. I've had epilepsy for years. Most of these years overlap. I've dealt with medication changes, seizure fallout, side effects, and all the other joys while also enjoying a high-flying sport.

My primary form of gymnastics was tumbling and trampoline. My best event was always tumbling because everything is entirely what I can do with my own power. Sometimes my skills were a bit sluggish, but they weren't ever scary or particularly dangerous. Trampoline was my worst because you have to hit the trampoline 10 times and every change in body position or proprioception is magnified by the elasticity of the trampoline. It's also easy to get a little off if you aren't able to focus. Double mini trampoline is only 2 skills, so it was my best when I was sluggy. The worst I experienced with epilepsy meeting tumbling and trampoline was having a partial complex at a meet. I had to withdraw after my coach realized that everything I was doing during warmup was autopilot. I've never had a tonic-clonic while in the air.

I did artistic gymnastics as well. Floor was my best event for much the same reason tumbling was--it's what you can do under your own power--so even when I was a bit wonky, I could make something work. I was very good at beam in practice. At meets or during a medication change, beam went to hell because it's all about precision and attack, which I do not have when my body feels alien. Postictally I was pretty awful at beam, but nowhere near as bad as I could be on vault. Vault involves running as fast as you can at a stationary object and hitting a springboard exactly correctly so you can fly over it. Speed doesn't happen postictally. Visual perception doesn't happen postictally. I know exactly how hard I can run into a vault, and the answer is rib-dislocation-hard. Uneven bars was the hardest for me because being even a little off makes it hard to muscle through things, and every time my body or brain changed I had to completely adjust the timing of moves. It was never a strength problem, just a consistency issue.

I came mightily close to seizures at a couple of artistic meets because of the techno floor music trend, so I did compete while heavily benzodiazepined a few times. Sluggish gymnastics lead to sluggish scores, but I didn't ever get hurt, fortunately.

There were a few things I needed to do to make taking epilepsy to the gym relatively safe. First, I needed to get very familiar with the difference between "aura" and "I need to eat/I'm working too hard/I'm tired/side effects". Second, I needed to disclose to my coaches that I have seizures, what they look like, and what to do if they occur. We needed to discuss a seizure plan, and for a period of time I kept rescue medication in the gym office. Third, during every medication change I had to chart side effects that might matter & we had to adjust expectations during workouts and competitions. For a while I was playing catch-up with private lessons since a particularly hard period made learning anything impossible.

My coaches ended up learning a few of the subtle signs that indicated a seizure was imminent. We had an agreement that they could send me for a snack & ask me to get off the equipment if I was worrying them. If I needed to take a rescue med, it was fine and I didn't need to announce it. Part of our agreement was that I was to wear medical identification at all times gymnastic & I was to carry a seizure protocol card in case they weren't the very first people around if I seized.

There was a lot of planning involved, but I got to do the sport I love in face of prejudices that say I shouldn't have. I still love gymnastics-it makes me feel invincible, like I can fly, and I wouldn't trade that experience for anything.

Anticonvulsants & me

I've been on a shitton of antiepileptic drugs. People always ask me about them, their effects and side effects. So here we go, with the good, the bad, and the whatthefuck. These are in no particular order.

Tegretol: I really liked Tegretol. It was absolutely amazing for my seizures (both times I took it). Unfortunately, it ate my blood cells for breakfast (twice). Seizure free, alas, I felt like crap.

Trileptal: I did not so much like Trileptal either time I was on it. Both times I took it, I was extremely uncoordinated and my brain didn't work. It made me sleepy-for me, a plus-but it didn't actually work for the seizures. As in I started having frequent absences and had a few drop seizures. It kind of sucked.

Topamax: I took Topamax from 2003 until 2010. I really did well on it for the most part, though my effective dose went up and down depending on what else I was taking at the time. I did get a bit of cognitive dulling, but it wasn't bad and it did teach me left from right. I got kidney stones as well, and did have a few borderline tests of kidney function, which is why I stopped taking it.

Zonegran: I took this twice too. It worked, ish, and made me sleepy at first but that always wears off quickly. The first time I got a bit of a facial rash, but nothing severe, and the second time it seemed to aggravate my kidney stones. It made me slightly stupid but nothing I couldn't have lived with had it worked.

Lamictal: Yet another twice tried, twice failed. It worked more or less, and even eliminated an ongoing headache. I really wish that I could take Lamictal. Alas, I got the rash. Twice. The first time it was bazingly obvious; the second we thought it was recurrent sinus infections until I sneezed out my sinus lining. It was so cool. Disgusting, but amazing.

Keppra: I love Keppra. A lot. It more or less works for me. It makes me happier. It made me less dumb. I started taking it right after a significant car accident. Significant is a word which here means "I forgot how numbers work". Within 6 months my math and language skills were back.

Neurontin: I took Neurontin for a few years. When I first started it, I forgot how to get from point A to point B. After a few months I acclimated, which is why I was on it for years. It made me sleepy every time I changed my dose, which was a plus, but it stopped working for my seizures and I felt very overmedicated at the time.

Gabatril: This was a short lived experiment. In theory it would replace Neurontin, but it didn't. I felt extremely spaced out and wasn't particularly coordinated. Since it didn't seem to work, either, we stopped it at about 3 weeks.

Clonazepam: For a long time this was just an emergency medication. I had a phenomenal amount of emergencies, so we added it to my daily regimen for 6 months or so. Going off wasn't hard, and I did not feel as drugged as one would expect. If there were side effects, I did not notice them.

Lorazepam: This was my emergency medication while I was on clonazepam daily. It worked pretty quickly for me and was somewhat sedating. If there were side effects other than sleepiness, I am unaware.

Diazepam: I took this as an emergency medication at one point also. Since it has a long half life, it was ideal for use during hormone swings that bring on seizures. It's not particularly sedating for me.

Temazepam: Yet another rescue medication. My theory during the time I took it was that it knocked me out and gave me a hangover so that I didn't notice seizure activity. Nothing in my life has ever made me sleepier.

Vimpat: This is the most recent addition to the list. I switched to Vimpat from Topamax in mid-2010. I got some headaches and experienced both dizziness and vertigo, but so far it is absolutely worth it. I have had 2 six-week seizure free spells since the switch; that is a really big deal for me. I've had some anxiety that may or may not be related to the medication as well, but the trade off is something I am willing to live with.

My brain is not your punchline.

I've been searching twitter for the #epilepsy tag.

A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.

No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.

Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.

A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.

Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.

You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.

Hit by a Neurological Truck

This is my last generic "so tell me about your epilepsy" post. I'm casting about my brain for topics that aren't wangst now, bc 23 days of "people with strobe lights and subwoofers should DIAF would get real old real fast.

The night this picture was taken (and I don't remember taking it) I had had a number of seizures. A double digit number of seizures. I looked and felt like shit.

That's pretty much the standard post seizure thing. I can't really focus. I feel like I got hit by a truck. Words aren't really happening. Understanding language may not be happening. Coordination, not happening. Visual processing, not happening. Moving fast, not happening. I'm tired, have a headache, afraid of stairs because they look funny, probably not really so good with the sense making, a little wobbly, and if I can process what you say, I've got receptive logic, but I don't have the language for expressive logic.

Right after a seizure I can sign but not speak and I want to sleep and don't want to move and I look like that. I actually probably do want company, and I probably want said company to talk to me as long as they aren't upset. I don't know why either, it's just a pattern. I guess if I feel like shit, at least I'm not alone feeling like shit.

I remember pretty much nothing from the few hours following a seizure, to the point of not always knowing how I got where I am. Good times, right?

The day after I look and feel like crap too, but I can usually get through the day. It's a headachey, cognitively screwy, very tired functioning, but it is functioning.

The day after the pic at the top:

First Responders & Me.

One of the topic suggestions I was given was "how to handle any paramedics or police officers who should happen to arrive during a seizure". This is very much a my-preferences entry. Other people will have different protocols. Some of them may even involve not being terrified of first responders and law enforcement and hospitals.

Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.

So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!

He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.

The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.

Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.

Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.

The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.

Repost-10Hz lights

This went up on my old blog about a year ago. Reposted for Epilepsy Month.

They're everywhere. But they don't need to be. It's actually probably illegal for them to be as many places as they are.

Yeah, I get that I can't go clubbing. I don't care that I can't go clubbing, particularly. But I do care that walking through downtown is fraught with hazards. Not just being chased down the street by aggressive panhandlers (true story) or someone taking a stoplight as a suggestion or thinking they've got right of way on a right turn because they're bigger (that happens too), but 10 Hz lights.

Everywhere.

They're on emergency vehicles, which I don't really get. You're going to create another emergency on the way to your already existing one, buds. There are other flash frequencies if you just can't give that up, I promise! There are whole STUDIES on what's least likely to trigger seizures in epileptic people. Since police officers are reluctant to, oh, read medical IDs, really, it's in their best interest to just stop triggering seizures already. And paramedics? It's damned irresponsible of you to leave so much havoc in your wakes. You should know better.

They're the way of alerting pedestrians (you know, people who don't drive? In this great state, incidentally, Thou Shalt Be Seizure Free for at least a year to drive legally) that someone is pulling out of a parking garage. Someone who feels they have right of way because their SUV outweighs you by a couple tons. Yep! Mid aura I am TOTALLY paying attention to that strobe light. I'm looking for the fastest way past it, which is a straight line. Past the SUV. And I *get* an aura.

The public transit system has been failing pretty hard too. I will end the next driver who flashes his lights at me. I will end more ferociously the next who tells me to get a strobey thing so as to be seen. I wear neon orange hoodies. They can see me, and I can actually function while wearing one! Amazing! The lights on the trains tend to flicker while going over bridges. And yesterday, they were giving strobe lights to bikers. What. The fuck. Steady beam, motherfuckers, you can use one.

Bikers, you aren't superior either. Your headlight? 10 Hz. I don't really care that your bike is greener than a bus. Your headlamp makes me want to call you horrible nasty things, assuming I can summon the language. Why does it need to flicker at all? Is there a reason for that? A sizeable portion of my first million, and hipster/socially aware bragging rights, to the first person to make a neurologically friendly lamp. I'm sick of having this conversation IRL, and sick of justifying to near total strangers "you're in good shape. Why don't you do the commute by bike thing?". "well, you see, ending up a mangled mess because I lost awareness of my surroundings because of my own headlamp isn't how I want to be remembered". "you'd be fine". "no. I wouldn't. And you don't matter enough to me for a demonstration".

And then, in the most ill conceived idea in the history of ill conceived ideas...and there have been a lot...some either extremely ignorant or extremely hateful jackass decided that the ideal thing to put on a fire alarm is a FUCKING STROBE LIGHT. Not a red light. Not something changing colors. A fucking EEG grade strobe light. Yes, a visual something is needed to be accessible to the Deaf. That doesn't mean that folks with epilepsy need to die of smoke inhalation/status epilepticus/wandering straight into flames because of the direct effects of a supposed safety device. Fuck that with the business end of a rake. It's not acceptable.

Now go point this out to an 'enlightened' person. I live in a liberal city. There are a lot of them. "But you don't, you know, have a DISABILITY". 'Scuse me? Pretty sure that's not your call, sweetcakes, and if all these things are barriers--and they are dangerous barriers--that's textbook social model (not to mention all the medical crap with epilepsy). Then there's all the crap about if it's that bad, don't go places, or THOSE places, or don't go there alone.

Yeah. No. This is what accessibility means. There's no reason I shouldn't be able to walk down my street, or from place to place downtown, alone. The flashing lights all over are the barrier. They're not even a difficult barrier to change, if people get past "that's the way it is"ness. I'm not asking to go to a dance club safely. I want to know that walking through public areas of my city isn't going to send me home dazed, confused, headachey, crabby, and postictal.

That should be a right. It should go without saying. Is it really that much to ask?