Epilepsy awareness month

[Kassiane]

November is not just diabetes awareness month, it's also epilepsy awareness month.

Much like Mocha, I'm going to post here things about epilepsy since the misconceptions are really...really....no. Bad. Wrong.

Seizure jokes & flashing gifs are unfunny.

1 in 26 people will be diagnosed with epilepsy, 1 in 10 will have a seizure at some point in their lives.

There are 2 main categories of seizures:

Generalized seizures take part in the entire brain.
Partial seizures start in a small location (called the focus) and may or may not spread.

Generalized seizures include:
-Tonic clonic seizures (formerly called grand mal)-the falling and thrashing that most people think of when they hear "epilepsy".
-Absence-a typical absence seizure is only a few seconds & is just blanking out. Hundreds, however, may occur a day. They onset & offset quickly. Atypical absences are more gradual onset & longer, & may include repetitive movements.
-Myoclonic-or muscle jerking
-Atonic-or loss of muscle tone. Can be partial or can be the whoooolllle body.

Partial seizures can be partial simple (in which case consciousness is maintained) or partial complex (in which case it is altered). A partial seizure can occur in any part of the brain & is often mistaken for being on drugs or considered a behavioral issue in children or disabled people of all ages.

[wind]

I'm epileptic.
Actually, being dx'ed was part of what led me to skepticism. I was SO SURE I was having paranormal experiences before having a few tonic clonic seizures and being diagnosed. Coming to terms with "I'm not touched by god; I'm just epileptic" was a huge turning point in my development as a person.

[ischemgeek]

I'm one of the one in 10 but not the 1 in 26. I had febrile seizures a lot as a kid. I was a sick kid, and got bacterial infections, which led to fevers, which led to febrile seizures. Basically, every time my fever got higher than ~102-103F, I'd have a seizure (usually a tonic-clonic). Sometimes I'd have several seizures. I don't know if I'd still have them since I haven't run a high fever since the last seizure I know about, which happened when I was eight or nine or so.

[Kassiane]

Alright, so let's talk potential complications.

If you actually have epilepsy and were unaware of these, I'm sorry your neurologist didn't tell you. If you've got complete control you are at low risk.

Some of the complications of epilepsy are...kind of common sense. People who have atonics or tonic clonics can get injured having falls. People who have frequent atonics sometimes wear helmets to prevent brain damage.

People who have seizures when cooking can also burn themselves, cut themselves, and do all sorts of other damage to themselves in the kitchen *got a 2nd degree burn making mac & cheese once*. Bathtub or swimming pool drowning is also a definite risk if someone loses consciousness in the water (or falls into it when not quite responsive enough to do something about it, but that's a touch less likely).

Some other complications that aren't immediately obvious:

Children with frequent seizures may have trouble learning-frequent absence seizures mean that they are missing a whole lot of material in class, & many kinds of seizures can cause damage that over time leads to cognitive problems. All people with epilepsy can develop more subtle cognitive problems that can take different forms depending on where their seizures are. Medications are not exactly fabulous for cognition either.

Anxiety, depression, and attention problems are very common in epilepsy. Some of it is hardwired in, some might be treatment related, some might be learned from the fear of having another seizure or the upsetness after the fact. Anxiety is really high if you know that where you want to go is not necessarily safe.

Epileptic people, like those with many disabilities, are also rather frequently exposed to police violence-particularly those with partial complex seizures, who are likely uncooperative & behaving bizzarely during a seizure, but who don't 'look like they're having a seizure' (if you know what PCS look like, they totally do. But most people don't even know that's a thing).

Trigger warning for short description of police violence

[ Show ]

Epileptic people have drowned in their own lung secretions after being handcuffed face down to gurneys.
Several have also died or been made very not well by tasers.
This particular author had 2 shoulders dislocated, a handful of hair ripped out, & an adrenal crisis (not related in any way to epilepsy) precipitated by police who took "seizure" as "on drugs and dangerous".

Finally, the ugly. Again, if you have epilepsy & didn't know about these, I'm sorry.

First, there is a condition called status epilepticus. It is a seizure that does not stop on its own. SE can be partial or it can be generalized. And SE is fatal if heroic intervention is not taken to stop it. Usually it's very old or very young people who have SE, but it is not unheard of in people in the middle of their lives, particularly those with difficult to control epilepsy or who for whatever reason suddenly stopped treatment.

Second (and in my mind, scarier) is SUDEP-Sudden Unexpected Death in EPilepsy. Unlike SE, SUDEP occurs mostly in youngish adults. Like SE, it is more common in people with poorly controlled seizures, or who just switched their meds, or who are not for whatever reason consistently taking them. No one knows exactly how SUDEP happens or why-just that it is a thing that happens in sleep. In some people the heart just stops, but in others it appears to be the lungs that stop going. SUDEP scares the ever living fuck out of me.

There's a daily dose of enlightenment.

[Garnet]

Kassiane, thank you for starting this thread. Last year, my brother had a tonic-clonic seizure. He's 58 years old and had never had anything like that happen before. It scared the hell out of all of us, particularly him. He hasn't had another tonic-clonic seizure since then but after reading this thread, I'm wondering if he is having absence seizures. My sister has described some behavior on his part that sounds like it.

[Kassiane]

Kassiane, thank you for starting this thread. Last year, my brother had a tonic-clonic seizure. He's 58 years old and had never had anything like that happen before. It scared the hell out of all of us, particularly him. He hasn't had another tonic-clonic seizure since then but after reading this thread, I'm wondering if he is having absence seizures. My sister has described some behavior on his part that sounds like it.

58? That's a little old for onset of absence seizures. Partial complex can develop at any age though. Partial complex tend to involve purposeless or mostly purposeless movements while appearing "spaced out", sometimes also with an emotional compenent (depending where they are).

***not a doctor-yet-but has a family full of epilepsy & an unfortunate tendency to read ALL THE THINGS***

[Garnet]

Kassiane, thank you for starting this thread. Last year, my brother had a tonic-clonic seizure. He's 58 years old and had never had anything like that happen before. It scared the hell out of all of us, particularly him. He hasn't had another tonic-clonic seizure since then but after reading this thread, I'm wondering if he is having absence seizures. My sister has described some behavior on his part that sounds like it.

58? That's a little old for onset of absence seizures. Partial complex can develop at any age though. Partial complex tend to involve purposeless or mostly purposeless movements while appearing "spaced out", sometimes also with an emotional compenent (depending where they are).

***not a doctor-yet-but has a family full of epilepsy & an unfortunate tendency to read ALL THE THINGS***

What you described as partial complex is precisely what my sister described. He's a very private person and won't talk about his health at all. I can only hope that he is seeing good doctors. I know that of late, he's been working hard at losing weight and exercising. I just worry, ya know?

[wind]

Kassiane, thank you for starting this thread. Last year, my brother had a tonic-clonic seizure. He's 58 years old and had never had anything like that happen before. It scared the hell out of all of us, particularly him. He hasn't had another tonic-clonic seizure since then but after reading this thread, I'm wondering if he is having absence seizures. My sister has described some behavior on his part that sounds like it.

58? That's a little old for onset of absence seizures. Partial complex can develop at any age though. Partial complex tend to involve purposeless or mostly purposeless movements while appearing "spaced out", sometimes also with an emotional compenent (depending where they are).

***not a doctor-yet-but has a family full of epilepsy & an unfortunate tendency to read ALL THE THINGS***

What you described as partial complex is precisely what my sister described. He's a very private person and won't talk about his health at all. I can only hope that he is seeing good doctors. I know that of late, he's been working hard at losing weight and exercising. I just worry, ya know?

He should probably talk to a neurologist. People can just sort of become epileptic at any age for mysterious reasons.

Ok, I've got a question. Do you guys believe in the "temporal lobe personality"? I kinda fit the bill over here.

Also, regarding SUDEP, I think I'm more scared of a nasty, drawn out death process than going out like that. Having a long, scary death is probably my #1 deepest fear, tho.

[Kassiane]

58? That's a little old for onset of absence seizures. Partial complex can develop at any age though. Partial complex tend to involve purposeless or mostly purposeless movements while appearing "spaced out", sometimes also with an emotional compenent (depending where they are).

***not a doctor-yet-but has a family full of epilepsy & an unfortunate tendency to read ALL THE THINGS***

What you described as partial complex is precisely what my sister described. He's a very private person and won't talk about his health at all. I can only hope that he is seeing good doctors. I know that of late, he's been working hard at losing weight and exercising. I just worry, ya know?

He should probably talk to a neurologist. People can just sort of become epileptic at any age for mysterious reasons.

Ok, I've got a question. Do you guys believe in the "temporal lobe personality"? I kinda fit the bill over here.

Also, regarding SUDEP, I think I'm more scared of a nasty, drawn out death process than going out like that. Having a long, scary death is probably my #1 deepest fear, tho.

@Garnet: I hope he sees a neurologist--or they see a neurologist--& they describe this. PCS seizures aren't as scary for the onlookers (a friend of mine describes mine as "least dramatic semi-crisis ever") as tonic clonics, but they can do damage & can generalize & that's no good.

@wind: Unsure if I do or not. I see myself (and my also TLE-effected father, and my not-epileptic-but-neurologically-wonky mother) in a lot of the descriptions, but then, I can also find myself in my horoscope (western, Chinese, and Japanese). I know there are noncontroversial deficits that are associated with temporal lobe damage & I'm kinda the poster child for those (faces! time! auditory processing! they do not work!!). So I dunno where I sit with that. I'm inclined to find a way that some of the traits can stem from the noncontroversial traits, I think.

I might have to look into that more, though.

And I appreciate people participating in this thread!

[wind]

Oh, god...I was searching Scholar for evidence of increased incidence of hyperreligosity in people with TLE, and came across the scariest term EVAR. "post ictal psychosis."



I'm hoping I've never heard of that before because it's exceedingly rare.

[Kassiane]

Oh, god...I was searching Scholar for evidence of increased incidence of hyperreligosity in people with TLE, and came across the scariest term EVAR. "post ictal psychosis."



I'm hoping I've never heard of that before because it's exceedingly rare.

It's...a thing I probably should have put in the complications post.

As I understand it, it's rare but not like raaaaaaare-rare, & yet another one more common in people with poorly controlled seizures. And there's sure to be multiple components that increase susceptibility.

*wanders off to research Things that Are Interesting brought to mind by this thread*

[wind]

I mean, waking up after a TC is freaky enough (once when I was coming to, everything went online in the wrong order, and it was scary as shit...I was hearing myself talk without realizing that it was me doing the talking...also, vision was still offline. After that, total amnesia. Took a good long while for everything to power back up)... but waking up actually PSYCHOTIC? Holy moly! Talk about a trip into hell!

[wind]

Oh! Another thing I want to discuss:

What do you think about the hypothesis that all hard-core (as in mind-warping, psychedelic) deja vu is a complex partial seizure? Even in otherwise non-epileptics? I've asked non-epileptics to describe their deja vus, and often they sound EXACTLY like my "almost definitely epileptic" complex partial seizure deja vus.

I mean, deja vu pretty much HAS to be some sort of neurological glitch. (Imma gonna rule out the possibility that in a past life I was eating This! Exact! Cheeseburger! Also, I'm going to do it AGAIN! lol.)

There are some neurologists who believe that all trippy deja vu is a mild seizure. They think those people who only have them are sort of quasi-epileptic.

This hypothesis seems completely likely to me, although it's almost untestable. (Not untestable in a woo way....untestable in a "we don't have the resources to test it, and it's not a priority" way.)

[wind]

REALLY not trying to engage in, umm...hypergraphia here, but another one (Since I read ALL THE THINGS, too...lol..)

If temporal lobe personality exists, this would be a matter of neurodiversity, yes?

[Kassiane]

REALLY not trying to engage in, umm...hypergraphia here, but another one (Since I read ALL THE THINGS, too...lol..)

If temporal lobe personality exists, this would be a matter of neurodiversity, yes?

Absolutely.

[wind]

REALLY not trying to engage in, umm...hypergraphia here, but another one (Since I read ALL THE THINGS, too...lol..)

If temporal lobe personality exists, this would be a matter of neurodiversity, yes?

Absolutely.

Groovy.

And I'm ok with being "hyper-moral" and a "fanatical" skeptic. (Skepticism is my core religion nowadays. I really don't see how I could be a good ANYTHING without humility and bravery and critical thinking.)

[Mocha]

Thank you for starting this thread! I'm learning a lot, and I think you sparked some things for me to research!

[wind]

Also, I'm Real Worried about Allie.

[Eowyn Entwife]

Thank you, Kassiane, and wind, too. Our first daughter's boyfriend has epilepsy, so all understanding is good and needed. This thread helped me realize that I have only scratched the surface of epilepsy knowledge thus far.

[Kassiane]

This morning I'm gunna talk to you briefly (way briefly) about treatments.

Standard treatment is medication. There are...a lot of medications. A. Lot. 50-60% of adults gain seizure control with their first medication. It goes sharply downhill after that, however. For kids the percentages are a bit different bc kids have onset of way more kinds of epilepsy-they can get what are called catastrophic epilepsy sydromes, which adults can't.

I know way too much about these things it isn't even funny. Common mechanisms of action are messing with GABA or messing with voltage gated ion channels. Fun fact! If you are crossing from one med to another that messes with the same one, you can totally end up feeling like shit if the crossover isn't managed right! This is how I discovered vertigo & it sucked!

Another treatment that's mostly tried in kids is the ketogenic diet. People hear dietary treatment and hear "oh, natural!" but it so isn't. Keto is a very high fat, very low protein & carb diet that's quite calorie restricted (allowing just enough to maintain growth) & therefore requires a whole buttload of supplements. It also requires learning to weigh your damn food, & for whoever is in charge of food preparation to become an artist in presenting food. It mimics starvation by only offering the body fat to burn. They've been trialing modified atkins diet in adults & teens-it is less restrictive on both the calorie & the protein front-but it's hard for many adults to enter ketosis so it's been less effective.

Another treatment, quite new, is the vagus nerve stimulator. I don't know exactly how it works, just what it does-a thingdeal is planted under the collarbone with leads with electrodes on the vagus nerve in the neck on the effected side-the side that starts to seize first. The thingdeal is programmed to send a pulse of a set strength at a set interval up the vagus nerve-last I heard it was sort of supposed to be like a pacemaker for the brain. It comes with a magnet that can interrupt the signal if necessary.

I really. want. one.

Finally, there are surgeries for epilepsy. Some people have heard of a callostomy, where they cut the corpus callosum, but that is actually pretty rare & only useful in certain kinds of generalized epilepsy that are very severe (since it causes all sorts of split brain issues there's a risk benefit thing). Another extremely rare one, used only in one specific kind of epilepsy, is a hemispherectomy-they go in & take out a whole hemisphere of the brain. This is only done in children & the other half picks up the slack, & it's in cases where the hemisphere they're taking out is causing nothing but trouble anyway.

The most common surgery for epilepsy is a lobectomy. The doctors find the focus-where seizure activity starts-and they take it out. They first have to make sure that nothing important (such as speech) lives in the area they're taking out. If it does, they can do multiple subpial transections, during which they cut the brain going from point A to point B around the focus, along the spread pattern, but they don't completely remove it. It's less effective than lobectomy.

[wind]

In my anecdotal experience, the vagus nerve stimulator usually doesn't work. Back when the Braintalk forums were active, a lot of folks there had it, and it didn't work for anyone. I guess it could have just been some weird coincidence, but it left me wondering...

[Imagination Theory]

Thanks for starting this. I have simple partial seizures myself.

[Kassiane]

I'm tired. Short post.

Epilepsy can start at any age. Causes include: hypoxia, genetics, brain injury, illness that causes brain injury, and luck of the draw. Many developmental & metabolic disorders have epilepsy as an associated feature (I was so fucked, I have one of each...)

Triggers are different from causes. Triggers are things that trigger seizures in people who have epilepsy-but they dont cause epilepsy.

Common triggers include: flashing lights, low blood sugar (can cause a seizure in anyone but people with lower seizure thresholds tend to be more sensitive), sleep deprivation, alcohol, skipping meds, stress, hormones.

Less common triggers (read as: anywhere from a little not common to 'the neurologist was excited because it's been documented, like, twice'): certain music or sounds, patterns, hot water on the head, reading or other complex thought processes, eating for some people (which would suuuuuuck).

[Kassiane]

For today, because RELEVANT:

After a seizure, there is often a postictal state (post = after, ictus=seizure, from I believe latin? greek?)

Immediately after a seizure, someone may be confused & tired. More than one person w.epilepsy has referred to a few hours later/after the nap as having a hangover without the fun of getting drunk". The headaches are a fucking blast.

Shower + coffee helps. A little.

[Kassiane]

I have a semi emergency neurologist appt today (LOTS of auras. Way too many).

SO later i will be writing up what happens as awareness of what happens at such things, at least when you have a genetic history, coexisting medical dx's, and failure of ALL THE AEDs.