EVEN WORSE TUMBLR — IMPORTANT WARNING too

The sponsored post I just saw on my dash. That went there involuntarily.

Was an animated GIF showing sparks flying and flashing all over the place.

Which was not tagged with any kind of warning.

So basically it’s now dangerous for any photosensitive person (epileptic, migraine, whatever) to look anywhere on their dash because there’s no way I know to turn off these damn sponsored posts from randomly turning up on your dashboard.

I’m really pissed.

I don’t feel too great.

Yesterday I woke up after days of mostly sleeping. And I read all day. And I woke up again. It felt like. Reading isn’t sleep. But it felt like sleep. Like my mind going through the words but not landing on any.

And I woke up alone, in the dark, and started crying. Because my temporal lobes are trying to convince me that the last couple months didn’t happen. And it’s really scary.

She says I’m still having post-ictal brain scrambling. But it feels so very like the early stages of getting out of delirium. She says maybe because my brain is not only having seizures but also fighting blankness.

But I feel wrong. I feel new. Like I don’t remember big things about the world. Things that should be familiar feel blank. At night in the dark the blankness is everywhere.

I don’t know how to say everything. But things feel wrong. I’m scared a lot of the time. It’s too easy to start crying again. I don’t remember things I should remember. I feel like I just woke up for the first time, and the world is new to me, yet that doesn’t go with having memories.

But it remains, that feeling I’ve never seen the world before and would never understand it. And as things happen to me, something in me just looks at them and goes “WTF? I don’t understand.” Instead of whatever it should normally do.

And I do push my brain a lot but in this mode most of what I do is failing to register in some important ways. I feel so much like I lost two months and I’m back at the end of October with all the confusion that means.

Okay all that before?

Seizure aura. How’d I figure that out? Had a very obvious complex-partial. I am actually less concerned about that than I would be about increasing delirium again. Although I’m now in that really painful post-ictal phase. But I actually think I am okay. And it explains all of tonight’s weirdness.

Was like I had a sense of emptiness closing in. And then a switch flipped and I was tired and groggy. Another switch flipped and my head fell over and couldn’t move. And then another switch flipped and I was less confused and could move again but felt like hell suddenly. That sort of thing is too sudden and switch-like to be anything but a seizure. And that’s actually comforting because it gives a concrete reason for all the fucked up things that happened all afternoon. Hopefully now I can just sleep it off. It’s weird I have rarely been glad to have a seizure before.

FUCK

Forgot seizure meds last night. That’s why I woke up in the middle of the night and couldn’t sleep. Even though I hadn’t slept in 24 hours already before going to bed. (I slept through the call to take my meds.) No wonder I had so much energy for writing, with so little sleep.

Now I’m trying not to throw up the meds I took. If I do, I don’t know what I’ll do because that’s an emergency pretty much by then. So I have to keep from throwing up for at least a few hours somehow just to make sure I don’t end up having to fight someone to give me Keppra in an IV before I end up in even more trouble. And I really want to stay out of the hospital.

hiereia:

situation: you do not know if a gif is abrupt or strobing enough to possibly trigger a seizure in someone. your options (and the consequences of them) are as follows:

1. tag it
2. just ignore it and figure it’s all fine

the consequences of option 1:

• someone may potentially miss a nice gif. oh well, it’s not that big of a deal

the consequences of option 2:

• YOU COULD GIVE SOMEONE A GODDAMN SEIZURE

it is always, always better to err on the side of caution with this, folks. it really is a lot nicer to be a little overcautious rather than not cautious enough.

And this is why I tag all animated GIFs with epilepsy warning and seizure warning.

Especially because I’ve found even when the GIF itself isn’t flashing, often in the course of loading onto my screen it will do weird flashy things.

So I’ve always figured missing a GIF is way way way better than having a seizure.

Especially given I’m epileptic myself and know that even a mild seizure can fuck you up all week, and a severe one can kill you.

And since I have severe migraines (think I have migraines every single day ever) that can be triggered by the same flashy stuff that triggers seizures for some people. And for some people a migraine is a rare but horrible event. Which is bad enough.

For me, they’re something that I constantly have to modify my entire environment around, to keep the severity level under 5 or 6 on a 1-to-10 scale, every single day. And if they become too intense, they can interact with other conditions I have, to do little things like induce severe dehydration. Or make me too weak to get to the bathroom. Or give me weeks of being nauseated every time I see any light st all, despite very little pain.

And if I have one bad enough one, I can get stuck in a loop where I have more and more. Which can leave me with weeks and weeks of not getting really important stuff done because whenever someone is here to help me do it, I’m curled up in a ball under a pile of blankets. Despite having learned to more or less function through migraines that would put a lot of people in that state.

And seizures can put people into that exact same sort of position. (Not to mention seizures can trigger migraines and migraines can trigger seizures.) And both seizures and migraines can lead to the loss of abilities a person normally has, in a huge range of areas, both before, during, and after, for long periods of time. Your flashy GIF may leave someone unable to talk, understand speech, move in certain ways, think straight, or plenty of other things. Which in addition to screwing up your day, can lead to inability to do your job, which if it happens too often can lead to losing your job, and I shouldn’t have to tell you what that means in this economy.

So putting epilepsy warning on things that flash, and anything you’re not sure about, is essential. And not just for people with epilepsy. People with any condition that’s sensitive to flashing light benefit from this. And the consequences of not doing so can range from completely fucking up someone’s day, to death. There’s a reason that knowingly exposing epileptic people to flashing lights has been prosecuted in some places as assault with a deadly weapon. So don’t.

And don’t tell us to just stay off the Internet then. I’m unable to speak, and I live pretty much my entire life in bed right now due to various physical conditions. (I get up to go to the bathroom, and even that’s often pushing it. When I go out, it’s in a wheelchair that tilts me back. And that’s mostly to medical appointments.) The Internet is literally my entire social life, I can’t just call people on the phone or something. I’m not asking anyone to feel sorry for me, just don’t suggest that the Internet is just a luxury I should do without.

It’s not very hard, especially for a nondisabled person, to tag with seizure warning, epilepsy warning, or both. And if it is too hard for you? Just don’t post the animated GIF in question, until it’s easy for you to tag it again. That’s even easier than tagging it. And if you’re not sure, tag it. That’s what I do, and I haven’t heard any complaints.

(Source: sidhebones)

Something fucked up is happening to my brain. Or something.

Yesterday I reblogged something on tumblr. I remember typing it out and sending it. But it didn’t appear. When I looked later, I had to retype the entire frigging thing, because it wasn’t there. Then it showed up.

Right after that, I read something on my dash. And I’m certain the person said the exact same thing, down to the detail, recently. But when I looked, it was not there. I mean the post I saw yesterday was there. But not the one it reminded me of. I did not ask the person because it was about a sensitive subject and I am pretty sure if I asked it could get taken very wrong no matter how polite I was or how innocent the question.

Later last night I got an email from a friend who had not gotten a response I was sure I emailed that morning.

Today, I emailed the same person a question. Then I did one of those “oops, sorry, I figured out the answer” things. And then she emailed me back, replying to the email that contained three links in it from me. She said something like “Oh yeah, I know about those. Like this one I’ve seen before. It’s called The [insert place name I don’t remember] Triangle!” (Stuff between brackets is me, not her.)

Sorry for being vague but it’s material for a future blog post so I don’t want to give it away before I post it.

I just looked in my email box and it’s not there. It’s gmail so it keeps track of stuff you erase. I erased nothing. The email doesn’t exist.

feliscorvus; Did you write an email in response to the email with the three links, that mentioned a triangle?

Could anyone help me figure out what the fuck is happening to my mind and my memory? I’m really scared. Not emotionally scared yet. But intellectually, absolutely. It’s been so many memories in one day that turn out to be true. I could pass the thing on my dashboard off as some kind of epileptic déjà vu thing. But the rest of them are detailed, sensory memories of doing things that never happened. This has never happened to me before. It’s pretty alarming to have it happen four times in two days all of a sudden.

It’s almost like hallucinations except in memory instead of in direct experience. And there’s a level of multi-sensory detail I’ve never had with hallucinations. And a level of mundanity. I’ve hallucinated before with temporal lobe epilepsy but it has never even slightly resembled this. And it’s never been a “back in time hallucination” rather than a present one.

The closest thing it resembles is a kind of dream I sometimes have. Where in the dream, I have this detailed backstory I am aware of as if it happened. But I never actually dreamed what happened in it. Like I might dream I remember ice skating, but never have dreamed I was ice skating to form that memory.

And even now I’m not certain that this is a backward-memory-hallucination, or if I’m remembering something I really ffelt like I was doing. And I’m not dreaming. And it’s so real. And I’m confused as hell about what happened. Anyone have even the slightest clue what it could be?!?!?!

Topamax. Blech.

I wish I could reply to other people’s ask posts. But I can’t. Someone asked sherlocksflataffect about Topamax and she mentioned that while she did well on it, other people get side effects sometimes.

I’m one of those people it does not work for in a big way. It did something to my feelings that is hard to describe. If you imagine this huge, flooded river coming at you at the highest speed possible, and sweeping you away in the most out-of-control way possible, then that gives you some idea. And while I knew something was wrong, I didn’t understand the full extent of my personality changes until I got off it. It felt horrible but it obliterated all perspective on whether things have always been this way or not.

My worst experience on it came when a friend said something to me. I forget what. It caused me a minor inconvenience. The sort of thing I’d normally blow off.

I don’t know how I got home. I got into bed. And was consumed with intense terror and rage and a sense that there was this bottomless pit of emptiness inside me, and a horrible yearning that could never be fulfilled. Every emotion cranked up to eleven. I felt like I was drowning.

And these emotions all converged on one desire: To go beat the shit out of my friend. This is not normal for me at all. Nor would it work — I suck at fighting and my friend is good at martial arts. But I ended up clutching my bed with my hands and my feet as hard as I could because I knew if I didn’t I’d somehow be swept over to her place and attack her.

The next day I told my neurologist to take me off it. Luckily, unlike my experiences with side-effects in the psych system, my neurologist just took me off it immediately no questions asked. In the psych system they would’ve taken this as evidence I had an underlying psych condition the drug unmasked and try to get me on meds for the purported condition rather than doing the sensible thing. It’s weird how both psychiatry and drug culture have this idea that side-effects are merely unmasking something that was already there. As if fucking with neurotransmitters can’t cause things that were never there. But I sure as hell know Topamax was like nothing I’d ever experienced. And I’m lucky I didn’t attack someone or kill myself or something.

Anyway. I do way better on Lyrica and Trileptal, I get what I consider minor side-effects but I’m almost seizure-free, and they clobber trigeminal neuralgia pain really well too. For whatever reason, Topamax makes my emotions go so out of control that who I am almost becomes impossible to find under all the rushing water.

I wish there were ways to describe this other than feeling weird.

I feel much less weird than before. But I still feel weird. I got distracted the other day, when my parents called, and ended up eight hours late on my seizure meds. I don’t remember a lot between then and now but I know it was seriously unpleasant. To make up for it without overdosing or going into withdrawal (seizure med withdrawal is seriously dangerous) I had to skip my morning dose and take my night dose a couple hours early. I think my neurotransmitters are getting back on track, but the world seemed very strange for awhile.

And yet if I am unable to keep down seizure meds, it’s really hard to persuade the hospital that it’s even an emergency, let alone that I need to be hospitalized and given IV Keppra until I get better.

I still remember this horrific experience when I was already hospitalized for a blockage that had slid into a position where it blocked my bladder too. I was delirious and vomiting constantly. So they knew I belonged in the hospital but they didn’t bother replacing any of my meds by IV.

So my experience at the time was basically that I would randomly pass out and wake up in different parts of the hospital where they were running tests on pretty much everything. Only normally when you pass out you don’t wake up clutching the bed rail with all four limbs while a technician tries to pry you loose. And when I was awake, I was hallucinating all sorts of creepy bouncy stuff moving to saccharine music in a nauseating way. And time was in an endless series of loops that repeated in an almost fractal sort of way.

I was rarely in good shape to type. But apparently when a friend visited I spent hours unaware of her presence, waving my fingers at the ceiling (I vaguely remember the ceiling having pastel shapes dancing all over it, and the room looking ornate and Victorian), and then looked at her and typed “Why are you repeating?” At which point her response was to run off and demand seizure meds, which they settled on Ativan for at the time. I was still delirious after that but time quit repeating. Without her I don’t think they’d have clued in until I was having constant obvious seizures, and maybe not even then.

Things like this make it obvious why the death rates in hospitals are so high.

Another time I’d had to get bounced in and out of the ER several times by people who didn’t think being unable to keep down seizure meds was an emergency. Then waited twelve hours for a room, while they repeatedly asked me if it wouldn’t be easier to go home. Only to have them force me to try and eat at the earliest opportunity. It all came out really spectacularly. And then try to discharge me after threatening to give me a suppository of a drug my chart said I had a life threatening allergy to. (The threat came after I refused to take a pill.)

The attempt to discharge me was because “we aren’t giving you any real treatment here”. Because apparently IV seizure meds didn’t count as treatment. Plus the hospital was full and when they’re full I’ve seen them discharge entire wards at once by declaring very sick people to be recovered. But when they do that they’re mostly hoping the patient won’t fight back. My friend contacted Patient Relations and suddenly the doctor decided to keep me until I was better, which wound up being a week.

At this point my doctor has all kinds of information in the system about how much Keppra to use and why they need to keep me there in the event of lots of vomiting. And they’ve found nausea meds I am not allergic to. Which have kept me out of the hospital for the most part.

But it seems very weird to me that seizure med withdrawal isn’t something they take seriously given how dangerous it is. And that they don’t consider IV seizure meds to be a medical treatment. I’ve heard similar stories from other people at this hospital.

I still can’t put a finger on what feels weird now. It’s subtle but it’s there.

Anyone whose brain responds badly to flicker

Don’t watch the Judge Rotenberg Center footage that’s making the rounds, or watch it advisedly. It’s got a constant background flicker that is just all kinds of not good for anyone who responds to flicker with seizures, migraines, or other brain ickiness.

This is me. With my head under a towel. Because my building has a fucking strobe light in the fire alarm. And this happens every time someone burns their dinner. They won’t take the strobe out because they say it won’t be accessible to disabled people. Meanwhile people with epilepsy, migraines, and autism could die if there was ever a big fire because we either wouldn’t be able to function, or could even walk out into the middle of the fire.

If anyone wonders the sort of thing I meant in part 8 about disabled people dying in the name of going against ableism. This is what I meant. (And yes there are visual signaling devices for deaf people that wouldn’t cause all these negative effects. They just don’t give a shit about doing it right.)