(no subject)

[electricland]

It's like pulling teeth. But progress is being made (would be faster if I spent less time online, o' course).

4 pages on Landau-Kleffner syndrome: done.

Up next: reflex epilepsy.

17 pages to go.

I need lunch now.

Comments

[lietya.livejournal.com]

Every time you talk about "a few more hours of epilepsy" or "up next, reflex epilepsy," I do a double take. I know what you mean, but my first thought is always "whoa, that's a lot to suffer for a job!"

Good luck. Definitely go eat something!

[electricland.livejournal.com]

strangely, this is one of the few times I haven't developed psychosomatic symptoms of what I'm writing about. Although whenever I get a little twitchy, I do wonder a little. ;)

Thanks! Good luck to you too!

*checks to see if she has typed the word "though" -- nope.*

[lietya.livejournal.com]

Thanks. :)

I can see that - it's a wonder you haven't fallen over foaming by now!

[life-on-queen.livejournal.com]

GO YOU!!!

[kendokamel.livejournal.com]

I had a speech client with LKS. It was... an interesting experience.

[electricland.livejournal.com]

Really?! Cool! It seems to be super-rare, so it's nice to know I haven't just wasted hours of my life on information nobody will ever need.

Also, I am constantly amazed at all the different things you do. One of these days I will sit you down and make you explain it all.

[swestrup]

I keep meaning to ask you where I could read up on automatism as a possible side-effect of epilepsy. I'm thinking of writing an SF story, and the hero would start off suffering from it.

[electricland.livejournal.com]

Hm. Well, 2 good sites are the International League Against Epilepsy (http://www.ilae-epilepsy.org/Visitors/Centre/ctf/syndromes.cfm) (stoopid name, but reliable info) and Epilepsy.com (http://www.epilepsy.com/). Epilepsy Ontario (http://www.epilepsyontario.org/) also has good stuff, although their design is horrible. The latter two also have a lot of links to other sites.

Automatisms are typically seen with complex partial seizures, although they can also show up with other seizure types. They are apparently purposeful, stereotyped movements that the patient is not aware of making. Alternatively, the patient may repeat specific words or phrases during a seizure. I don't know if that's what you're looking for...

The best layperson's book I came across while I was doing my initial research was "Seizures and Epilepsy in Childhood: A Guide", put out by Johns Hopkins. Unfortunately I don't know what the best guide for adults would be.

[swestrup]

> Automatisms are typically seen with complex partial seizures, although they
> can also show up with other seizure types. They are apparently purposeful,
> stereotyped movements that the patient is not aware of making.
> Alternatively, the patient may repeat specific words or phrases during a
> seizure. I don't know if that's what you're looking for...

This much I knew. What I don't know is how debilitating this is, or how people cope with it. I'm also not too sure on what the full gamut of documented automatisms is. The plan is for the character to be an extreme case. Possibly going far enough to seem like split personality, but I'm not too sure how much that would be pushing it, in the neurobiology sense.

[electricland.livejournal.com]

well... they're one of the manifestations of the seizure, they don't happen in isolation. The seizure is the main problem -- the automatisms are trimmings. From what I've read it would be pretty obvious SOMETHING was going on -- you couldn't mistake a complex partial seizure for ordinary everyday behaviour -- but the brain is very strange, and anything's certainly possible.

My ten-year-old review article by Devinsky (Clinical Symposia 1994;46(1):2-34] has this to say:

In [complex partial] seizures... staring is typically accompanied by impaired consciousness and recall. The patient might respond "No, no, not that," regardless of the question asked. Automatic movements (automatisms) occur in most complex partial seizures and involve both the mouth and face (lip smacking, chewing), upper limbs (fumbling, picking), vocal apparatus (grunts, repetition of words and phrases), or more complex acts such as walking or mixing foods in a bowl. Less common automatisms include screaming, running, shouting, bizarre and sometimes sexual movements, and disrobing. Complex partial seizures usually last from 30 seconds to 3 minutes. Auras commonly precede the impairment of consciousness by seconds. After the seizure, lethargy and confusion are common and usually last for less than 15 minutes.

Your best bet may be to do a Medline search for "epilepsy and automatism" and just scan through the abstracts. PubMed isn't perfect for this (if you have access to Ovid that would be better) but you should get a fair idea of what there is, especially if you focus on case reports.

Sadly, a lot of the older stuff has no abstracts available. Even so, worth a look.

[swestrup]

What I meant was that I'm trying to find out about coping strategies for people with epilepsy. Actually, those links were already quite helpful, although I still haven't quite found out what I'm looking for.

They mention that folks who have some of the more extreme forms of automatism (violent actions, disrobing, wandering off) develop strategies to diminish the repercusions of this, but I have no idea what those strategies would be. I don't know what sort of living arrangements people in this sort of circumstance make. Do they rely on some sort of living assistance program? Do they need/use helper animals? Can some of them maintain independant homes?

I did come across one personal account by someone with a form of epilepsy very similar to the one I'm thinking of for my protagonist, and she's publicly said that folks should feel to write to her and ask about her experiences, but I'm not sure I'm quite ready to do that yet.

[electricland.livejournal.com]

Ah. Right. Sorry! I haven't hit that section of the website I'm writing yet, so I can't give you much help -- try back in a month. ;)

I'm probably not telling you anything you don't already know here... A lot would obviously depend on the severity of the epilepsy and any underlying conditions. (Complex partial seizures are often symptomatic, meaning they're caused by brain tumours or head injury or stroke or congenital malformations -- a lot of the time those can also cause mental disability or developmental delay, which is one reason the seizures can be hard to spot.)

Some people do use helper dogs -- obviously they need to be non-disabled enough to be able to look after a dog and interpret what the dog is telling them. Some would definitely be in assisted living. If the aura is distinct and reliable enough, some people can go away and lie down when they feel a seizure coming.

if I think of anything else I'll let you know!