Monday, November 27, 2006

All About My Seizures

A lot of the time when people think about seizures, they get this mental image of someone dropping to the floor and flailing around like a fish out of water. I blame television and the movies for dramatic effect. Not that this can't happen with a tonic-clonic seizure but seizures come in many flavours. They're wild and wacky and I find them just fascinating! Yes, I want to be a neurologist when I grow up. But for some, they can be really debilitating and that's not good. For me, I've never really had any problems.

Simple partial seizures happen while you are still conscious (or you might lose just a wee bit of your awareness.) They are also called "auras" as they can lead to seizures where you do lose consciousness. Therefore, they really should be investigated even if you don't think you have a problem. I am generally aware enough to tell you that I am having one and can speak to you but I have difficulty keeping track of time in order to figure out how long the seizure is lasting--if that gives you an idea of how impaired I can become. And a lot of the time, my seizures have just made me feel really tripped out or kind of stoned so I haven't really minded them haha!

As a child, I experienced the following:

  1. Muffled ambient sound (kind of a whooshing sound, like being underwater that would go back and forth from side to side)
  2. Deja vu
  3. Rapid changes in my heartbeat for no reason
  4. Trunk spasms
  5. Visual illusions in the form of scintillations or "seeing stars"
  6. A weird sensation of "brain tingling" (I know, it sounds weird but I could *feel* my brain)

As I grew older, a lot of these issues just sort of seemed to resolve themselves. They just went away and I guess I "forgot." But when the bipolar started to hit in my early 20s, some of them started to come back a little bit. I find this very interesting due to the fact that bipolar disorder is treated with the very same drugs used to treat epilepsy. Now of course, not every person with bipolar has a comorbid seizure disorder but with some trigger and rapidly misfiring neurons, had this awakened my sleeping seizures?

Also, with the beginning of anticonvulsant treatment, my seizures were definitely affected. This is not unheard of as with new treatment or a change/titration of a med, your brain can get hit in an affected area and it just might take a bit of time to adjust. Theoretically, if it's the right med, things should even out.

As an adult, now with bipolar, all of the above came back, pretty much minus the trunk spasms and not so many scintillations but also:

  • Depersonalization/Derealization (Woo Hoo! I'm floating away!)
  • Body Image Disturbances (more specifically called micro/macrosomatognosia--aka, my hands/feet are too small or too big!)
  • Jamais vu (that's my stuff but it doesn't look like my stuff and just where the fuck am I even though I know this is my desk...)
  • Micropsia (why does my keyboard look so small--great when in conjunction with macrosomatognosia!)
  • Epigastric rising
  • Rapid eye blinking
  • And my all time favourite, gelastic seizures

Now a bit of explanation about what the hell these things are. And no, you don't turn into a big rubber band or a gymnast. Gelastic seizures are rapid rushes of emotion (any kind!) out of nowhere. With me (luckily) it was humour. I've only ever had two but they were hilarious--literally. I would get all spaced out with some DP/DR and then, just start laughing uproariously out of nowhere and nothing was funny. I mean, nothing.was.funny. And wow, I was doubled over, uncontrollably laughing, busting a gut, drooling and then, *snap!* I was back to "normal," straight faced, like nothing had ever happened. Spooky, huh?

Now, there was one other rather "exotic" occurrence that befell me but it's unconfirmed. I'll add it anyway because hell, it's a great story and I believe that it really was "epilepsia partialis continua." You can read about it
here. Now, not to worry, I have neither any lesions nor Rasmussen syndrome haha. But the introduction pretty much lays out what I went through and if you scroll down to how it presents, that's a match too. This was, I believe, in large part due to my old arch-enemy Effexor and probably its partner in crime Wellbutrin. I was on them at the time plus a sub-therapeutic dose of Lamotrigine.

So, I'm on my way to work and the eyes start flickering. Okay. Is this going to turn into a "big deal" or will it just resolve itself? By the time I get into the building things have rapidly progressed (about 5 minutes) to my jaw thrusting and jerking. Soon, my neck joins this to make a trio. I begin to call my doctor but by the time I grasp the phone, my tongue starts drooping out of my mouth and I can't speak and I'm drooling like crazy. I'm not aphasic, mind you--I just physically can't speak because I'm twitching and jerking uncontrollably and my tongue is literally falling out of my face. Then the jerking starts to move down my right shoulder/arm and my hand starts to twitch.

At the time, the GP I was seeing was a mere couple of blocks away so I walked to his office and boy did I make quite a stir! I tried to write "Tardive Dyskinesia" with my left hand (I'm right handed haha) because no one could get a word out of me and this was prior to my whole seizure diagnosis--not to mention that I had been arguing with this doofus about whether or not I even had been having seizures. He did not believe me and said they were merely manifestations of "stress." Yeah. He was just about to reach for the Cogentin but then decided to send me to the hospital instead. I rotted away in the ER for hours when someone finally looked at me. By then (about 6 hours later) things had settle down a fair bit and I didn't appear in such dire straits. They made me walk a straight line and push/pull against the doc's hands and pronounced me "fine" and said "go home." I collapsed in a heap of post-ictal exhaustion and just slept. I can't even try to recreate what I looked like. It was seriously like being possessed like a demon. And it hurt! I was in so much pain! I didn't know your body could do that against your will! It's no wonder people feel like such utter shit after tonic-clonics!

I said TD because in post marketing, some stuff came back about Effexor even though Wyeth doesn't want to tie it to the drug. Yeah, no doubt. It's in the PI sheet (or at least one I read) and on RxList. And Wellbutrin? I don't think it's got the greatest track record and supposedly can "unmask TD."

I'm not sure about any other stuff Effexor did to me but when I drank on it the myoclonus sure got worse, I fell down a lot and even got a concussion once. And I would frequently wake up in a puddle of urine--a sure sign of nocturnal seizures. No neurologists were in bed with me *snicker* so no one can be sure, however. Still, I've never been so drunk in my life I haven't been able to make it to the bathroom so I'm pretty sure I was seizing then too.

Okay, guess that's it from seizure central.


Sarebear said...

Very interesting. I've had these things (they call them night terrors, in my case I was told . . .) where I am asleep, and I literally feel a HARD HARD slam on the head, which causes often a bright white light, with sometimes an exploding pain accompanying, sometimes not as much if the blow feels less, and a few seconds later (as far as I can tell), I wake up to my whole body jerking up and around violently on the bed.

Extremely disconcerting, I'd say.

There was one time I woke up to it felt like the main muscles in my back had all been yanked in a way to make my body try to fold itself in half violently, and that's what it was trying to do as I woke up.


Then there's the ole punching in my sleep thing, but that's an entirely different animal (and good for my husband that it's to the right, with my left, so's it's away from him, altho I've come close to slamming my fist into a sharp desk corner that way . . . )

I'm sorry you have to experience these things, although you describe it very well.

Patient Anonymous said...

Wow. That sounds highly unpleasant. These would all fall under the umbrella term "parasomnias." Again, highly fascinating stuff.

My older sister used to have terrible night tremors when she was little but she grew out of them. I haven't heard of anything pain related and the light stuff...but when you're in that "state," well, gee...I suppose anything is possible as the night tremor-ee can't communicate. And of course, I'm just a "wanna-be expert who may talk out of her ass sometimes" so forgive me. Ha! I don't mean to sound smug, people; I'm's a joke!

The bodily jerks sounded interesting and I did find something called Nocturnal Paroxysmal Dystonia that is a "seizure-like" parasomnia that may in fact really be epilepsy? It sounded kind of funky.

Normal "myoclonus"--bodily jerks, occur when you are falling asleep but while you are asleep they usually don't occur. Or shouldn't. And certainly not with such veracity!

I've had a few in my life (parasomnias.) I've sleptwalked (is that a word? Ha! I made it one now...) and I've done the punch-your-partner-in-your-sleep-dance. That one isn't so nice. Oh, I've talked in my sleep too. Had full conversations and I think even lied haha! When I was a kid, pillows always ended up on one side of the room, blankets on the other. As an adult when I get a bed to myself, I can still wreak havoc with it.

And again Effexor made we a FREAK in bed. Sleep paralysis, horrific nightmares and nocturnal orgasm--which everyone thinks is a real blast but when you put the three of them together (plus the seizures?) it ain't so grand.

Dreaming about massive train wrecks and gored bodies and then having an orgasm isn't too sexy...and then feeling paralyzed and waking up in this semi-conscious, sweaty haze? Uh, huh. Gimme more of that, baby.

And because of Effexor's short half life (and I was on such a high dose) I could actually make this happen if I skipped a day. I tried it and it worked (a little experiment!) How icky is that?

Do you see a neuro?

Sarebear said...

I think my iatrist also had a degree in neurology, but he's closing his practice. I need to find a new iatrist . . .

I see an ologist for therapy.

I never thought about the sleep paralysis thing on Effexor (I'm on 300mg a day) but there are times I wake up from a nightmare and am helpless and can't get up or do more than vaguely wish I could, to stave off what I know is coming next as I fall back into sleep and more of the same nightmare or worse . . .

I am right there with you on the nightmares. There are things that are so disgusting, vile, horrid, violent, gross, whatever, some of them mixed up with sex, in violent horrible ways, and many other things . . .

When I was on Klonopin briefly, half a pill at night, to stop the night terror thingies, it stopped those, and also cut the incidence of the horrid nightmares in half or better, and helped me get alot more restful sleep.

I've sleepwalked, screamed, talked, too. There's a funny story from early in my marriage when I was having a nightmare that a 5 foot high pile of dinner plate size hairy spiders was boiling out of the walk-in closet, so (still asleep) I bolted out of the bed, out of the bedroom, and apparently had my hand on the apartment doorknob, turning it to open (apparently I had also managed to unlock it too) before my husband caught up with me. He surrounded me with his arms and I pleaded for him to let me go, and when he wouldn't, I begged him to turn on the lights. He did, and I woke up.

I would have been mostly naked running around outside; I'm glad he caught me, lol! But if YOU thought a 5 foot high pile of dinner plate size hairy spiders was boiling out of the closet at YOU, wouldn't you run as fast as you could? lol . . ..

I wish I had nocturnal orgasm. I have hardly ever had an o in my life. I think I've had a few (I can count on one hand or less). It sucks. Then again, I'm female, and it wouldn't be such a mess anyway.

And combined w/that other stuff, it wouldn't be good at ALL.

Do you see a neuro? Well I guess you'd have to, with seizures and stuff.

Patient Anonymous said...

The Effexor could be contributing to the nightmares but I'm not sure. Did you have terrible nightmares such as this prior to taking it?

Wow, spiders freak me out so I would totally be panicking from that dream!

Orgasms. Sex. Gee, what kind of face can I make here. How about a not very pleasant one.

I guess they don't call it "bipolar" for more than one reason. I was either a hypersexed little vamp/vixen (oh the stories *hangs head*) or now, I feel like a...hmmm, what's the female version of a eunuch?

I can't find any term and I don't mean Germaine Greer's book haha. I can't seem to find any interest in sex and if/when I do, it's extremely fleeting and orgasm is a major challenge. I lose focus a lot (ADD anyone?) and I just give up in frustration altogether.

Luckily I have a very understanding partner who says that if I'm not interested then it's just not worth it (i.e. no point in me "faking" it--the act of "being there" not orgasm, I've never done that.) She's great. But I still feel bad about straining our relationship.

Ha, this should probably be a post!

Ah, I'll get to all of my personal rants/disclosures in time. I'm still "introducing myself" and dealing with "practical information"...if that makes sense. Eh, it does to my brain.

Maybe my blog is too boring. I'm having blog angst too. Maybe I need to write about that as well haha.