Presentation for College

[Matthew74]

Everyone,

What would you like people to know about epilepsy?

I'm thinking of giving a presentation at the local technical college about epilepsy. I will cover the basics (what it is, how common it is, what you should do, etc.). However, I also wanted to focus a bit more on the "what it's like to live with epilepsy" sort of thing. I'm hoping that I can personalize the illness somewhat so that the students can see that epilepsy is fairly common, and that regular people have it. I can think of all the things I might want to say, but I wanted to ask you all what YOU would say.

Thank you,

Matthew

 

[N Sperlo]

One thing that is always good to focus on is the fact that there are so many forms of seizures that people don't understand or even know exist. i.e. partial seizures or "myclonic jerks".

 

[Matthew74]

That's a good suggestion. Even some of the books about epilepsy are vague or misleading about that, since they tend to oversimplify.

 

[N Sperlo]

I think simplification can be a good thing, but the thin line between that and oversimplifying will be what to watch.

Maybe you could also find some cases of epilepsy that were for one reason or another "hard to diagnose". That may be along the same lines, so they could segue.

"What it's like to have epilepsy" will be a helluva task to tackle. That may be a good topic to scroll through the threads here.

Side effects of the commonly used drugs could be interesting because it is a huge part of our battle.

Common tools of diagnosis could be an interesting topic for students as well.

 

[Nakamova]

Also, many folks still believe someone having a tonic-clonic seizure needs to have something put in their mouth. So maybe cover the basics about how to intervene properly.

 

[BIGMAN131307]

Most people only think of tonic-clonic seizures when they hear someone had a seizure.
They don't realize there a many different types of seizures.

People also need to realize you typically "can't swallow" your tongue. Well maybe if you're Gene Simmons you could. But people generally can't. If the person that is having a tonic-clonic seizure severely bites their tongue, then it might be possible. But that is a very rare occurrence. Remember the tongue is the "strongest" muscle in the human body. It will take tremendous amount of force to cut through it. In a situation where a person exerts that much force, they'd probably be dead before it happens.

In general most people are just not informed on the very basics of seizures, and proper
first aid techniques. IE: Stay calm, don't hold the person down, loosen tight collars, roll person on their side, etc...

 

[Cint]

As said, most folks immediately think of tonic-clonic seizures when speaking of epilepsy. So people need to know that some can start out as SP/CPs and then could go into a TC. But don't panic if seeing a person going into one, check to see if they are wearing a Medic Alert bracelet or something similar, after turning the person on their side, loosening the collar, try to get something soft under their head. And most of the time during a TC, the person will turn blue for a short time, so don't panic. If the seizure lasts more than 5 minutes, then call for emergency help. They're going status.

 

[Matthew74]

As you say, I am certainly going to cover basic first aid.

On a personal note, it's rare that I have a full-blown seizure in public. Mostly I'm worried about drawing attention, biting my tongue, or falling. Do you folks worry about what people will do when you are unconscious or can't control yourself? Have you ever had someone do something wrong or dangerous?

 

[Cint]

I've had several TCs in public. Once someone did call 911, not that it was dangerous. Only that I had to pay the bill. I've fallen and ended up with black eyes, bruises, burns, all sorts of injuries. I don't really worry about it. What happens, happens.

 

[kirsten]

MIn a situation where a person exerts that much force, they'd probably be dead before it happens.

I

With my second TC, I bit my tongue almost clean in half. The only reason I didn't bite it through was because the bite was at an angle. I had to get it stitched up. You'd be amazed at how much force we can exert during a TC.

 

[kirsten]

I've fallen and ended up with black eyes, bruises, burns, all sorts of injuries. I don't really worry about it. What happens, happens.

This is exactly what I always tell people. First off, the fall will probably have done more damage than anything that will happen during the seizure, so there's nothing left to do, really. And I tell them that if they try to restrain me, they'll probably cause more damage because the body will fight against them and it could cause a sprain. Nobody's ever put me into the recovery position or any such thing. I've never woken up with foam in my mouth or anything that might choke me. And I tell them that it looks much scarier than it is, that it isn't really such a big deal--it just seems that way. Oh, but I do tell them to check their time. I'm prone to status, so I tell them that if five minutes have passed and I'm still not conscious, they should call an ambulance.

 

[Matthew74]

I imagine that most people don't know how bad you can get hurt in a bad TC. They probably don't know about "side effects" of seizures like memory, exhaustion, etc.

 

[Janus]

Great idea! kudos to you for doing such a presentation. I am inspired and think i may try to put something together for my kids elementary school also. In your case i am surprised that no one has mentioned the great minds of the last two centuries that we know had epilepsy. Not to glorify it at all but as a way to cut back the negative ideas people have about it. See Dostoievsky , Thoreau, and the list goes on ; see artists with E. and it is even bigger.

 

[katzy]

Include famous people with epilepsy because people sometimes think having epilepsy makes you stupid.

 

[petero]

first of all - what I usually tell people: you have no idea what epilepsy is like, and you have no idea how the mind works as a solid-state storage mechanism.

There is no way to tell people what it is like. I learned about it as a disease when I was a kid, hearing about it among other common diseases. I was diagnosed in 2008 and just got my SSI medical approval (yay?)

I've been going through a process of extraordinary enlightenment lately which I attribute to some clever ER doctors, or some doctors, who knew about this solid-state brain memory engineering though.

The brain is built one thought at a time along an electric pendulum of pulse which we call "thought". What is left behind as thoughts progress and the brain grows is this solid-state storage.
Epilepsy isn't about just "shaking" - but it is about having the mind "hacked". The brain gets hacked through a cleavage that can have an uncertain path through the solid-state storage of what we have done.
Seizures involve motion often, because we move so often throughout life (especially walking to the bus - lol). Unfortunately seizing isn't just a walking motion, but an Every motion at the Same Time. Any kind of gastric or lung motion (why my lungs hack out so much crap after - they get "wrung out") or bodily motion can get activated as the seizure chemistry clatters through the brain.

They may find it easy to consider computer code and how it is like the brain in relation to seizures. As an old school BASIC familiar guy I remember "GOTO" as a common program. I remember how funny it seemed to do a circular program ("start, add 10, goto start" kind of thing) or funny when old Atari 2600 games would get jammed up (that Tanks game seemed particularly bad).
Seizures are like this in a way. The brain can get hacked and a seizure is a bit as though going through a program, and picking out random program bits and only using them to run the program.
It would be nonsense and probably look funny/scary.

Anyway, one time at the ER trip I was through clusters like crazy shit after massive sleep TCs.
I've come to the understanding that actually someone TAUGHT me this s**t while I was psychotic (psychotic seizure: akin to when an HTML program misses an end-parenthesis and the page ends up %sense vs. %garble and the person's reality is like this)
and that is all of this information I've been slowly wringing out through my consciousness.
I never had a sense of seizures like this before, and I think a doctor knew of the solid-state brain architecture and wanted to fill me with some brilliant info. So what they did is tell me all of this stuff while I was psychotic, and got it literally stuck in my head. Thoughts get threaded -along- the electrochemical building blocks that build up the brain.
Just aside of our thoughts is actually *nothing* but the halo which is the power of our minds' ability to sustain the line of thinking.
We feel 'weird' around seizures because they are like a lightning bolt penetrating the library of consciousness such that the brain feels whatever word is just beside each word in each book burned by the lightning bolt. Ever read or seen a half-burned book?
That might be a good visual aid even - bring in a half-burned book and have them read it aloud - it should sound pretty "psychotic". Maybe they could act it out also to humiliate them into accepting your tutelage - lol.

think about this - we already have some methods of removing memories from the brain - lobotomy is one. The matter itself does not contain memory. Rather, matter is what allows the CONDUCTANCE of memories AROUND the substance. Conductance loves iron - a reason why we need to eat iron and other metals (and because they bond to oxygen well). The brain has a lot of metal in it and makes the head very heavy (40-50lbs. or something). The brain is not able to conduct through areas where matter is gone. (A good reason why entire memories need to be removed during a lobotomy, otherwise you could live in auras forever.)
Conductance is moved by waves. During the seizures the conductance of the brain is altered by increasing these waves either chemically or through heat or through motion... Therefore the direct connections through the brain aren't accessible - just as sliding a ring down a horizontal rope is altered as the wavelength is changed.

Tie a string to a door handle, maybe 6 feet of string, and thread a bolt or washer on it. Have the bolt in the middle and just by waving the horizontal string try to move the washer both back and forth. Maybe a rubber band would work better than a bolt.

In this same way our minds wavelengths are altered by the weights of or minds. And keep in mind the brain is doing this with something like, for a supposed guess, 1,000,000 "strings" at a time.

Does material make our being? or does being make our material? It's the oldest philosophical question there is. In that regard epileptics have the front row seat to that question - s**t front row, we're the only ones EXPERIENCING the question on a part of that field.
I've been experiencing deep religious resonances over the past year, and not quite just for tenets to living because religious icons and figures were/are blessed, but because they had epilepsy.
Have a psychotic seizure and you will never look at the iconography on Angkor Wat the same again (http://en.m.wikipedia.org/wiki/Angkor_wat). I don't think it was a place of sanctity as much as a place for "insanity" - i.e. an asylum where psychics had a temple/psychiatric hospital built.
Jesus died and came back to life? Sure it wasn't a seizure? Same with a lot of biblical events I say. I'm not saying there's no God - I'm saying knowing God is enriched by knowing more about the mind, and that by having a seizure I think we're basically looking deeper and deeper into God.

Anyway.
I've come to a consideration there are studies regarding the memory/conductance issue, and that I've been a proof positive. And how do I know? Because I've had throughout my brain since the time I was at the ER this clutter of thought-matter which has been spreading like a tablecloth on slick tabletop throughout my brain, about all of this scientific stuff which has been resonant, and perfecting in my understanding of epilepsy.
I was at a Texas state student hospital and I'm coming to think and seem to realize (though I don't really remember much at all of that timespan) that I may have been a clinical study regarding this solid-state brain memory topic.
Memories are stored alongside and 'between' conductance. I imagine the Mickey Rourke X-Men character Electro(?) who had those electric whips. We exist as rope jumpers double-Dutch-ing between ropes of conductance like these (I'm thinking of this as in just the visual effect sense - conductance itself is between matter and not made of actual physical whips like in X-Men). Depending on the chemical polarity there may actually be many many of such ropes. But instead of being bound to "Electro" our ropes are gravitationally tied to our brain's mass itself.
What I'm thinking I've been given is something equivalent to an e-book to hear while I'm double-Dutching. And that the only way technologically (so-far) to access the "double-Dutcher" is to have them be experiencing psychosis.
While we "double-Dutch", we as humans are actually running forward in living. While seizing we lose consciousness amid the Electro whips and just slump there and get more and more dazed by them, depending on where they're hitting our body. During psychotic seizures we are still hop-running, but at the wrong speed - so we are still "active" but totally stunned and out of synch, but at least it seems there is an ability to have an e-book slipped in during that active period. And anything else going on during that period apparently gets locked in there too. This isn't an immediate download, because all of that data gets pretty strewn throughout a totally different bitrate... think of the first breakdown of the data in the movie "Contact", when the "background noise" within the Hitler thing actually held the pertinent info... ala a "different bitrate".
Psychotics aren't idiots - hardly. It's that people around them are idiotic and scared of the way psychotic seizures behave, and that the crazy voices inside of the head are what goes on TO an epileptic DURING previous seizures, and that information is what thence forth is resonant in the mind. The psychotic seizure proves what a solid-state unit the brain is. Humans are nothing more than an external storage device being dragged behind an Electro double-Dutcher wherein the Electro is nothing more than just the conductance of ourselves around and around our own conductance held together by gravity at a point we call reality, where the conductance itself is created.

I'd email you the pages and pages of journaling I've done regarding this over the past few weeks (after I think I had the "same seizure" which means the info has been absorbed to a maximum I'm guessing) but it's a little long and probably too personal.

 

[petero]

...
People also need to realize you typically "can't swallow" your tongue. Well maybe if you're Gene Simmons you could. But people generally can't...

well, people can swallow their tongue, during periods of intense relaxation (ex. drug OD), and seizures are not a state of relaxation. Muscular tension of the tongue means you're sticking your tongue out LIKE Gene Simmons. But it can't be tensioned and swallowed at the same time... also because the throat is tensioned, and often expelling..

 

[petero]

another note- if there is a lot of BLOOD during a seizure (and NOT a queasy definition of "a lot of blood") I would say it is a point at which attention really needs to be paid. Another point is choking (make sure we are on our side!).
And technically it is possible to swallow the tongue during a seizure - if we bite part of it off and ingest it... which brings me to the point of "a lot of blood". The most important blood then too is a lot of blood coming from the mouth. if I scrape my knee, don't call an ambulance. If I have lost at least a tablespoon of blood from my mouth: call 911. If I have not breathed in over 30 seconds: call. If I just "stop drop and roll" please don't call (unless if I'm in the middle of the road or something...) because it costs me $1000 to have someone get in my face and tell me less than I already know about epilepsy.

 

[kirsten]

Have you ever had someone do something wrong or dangerous?

Hell, yes. Strangers were happy to let me get carried into a complete (male) stranger's car.
Tell the girls to take care of their own. Hell, tell the guys to do the same.

 

[Matthew74]

Good point. People do stupid things when they are freaked out.

I will make a point that people should always treat a person having a seizure, or someone who is postictal as they would anyone else, showing them respect, dignity, thoughtfulness, and consideration for social and other concerns, including gender and safety. There is some tendency for people to treat others who are incapacitated as objects, or just impersonally (like when someone speaks to a disabled person's companion, rather than directly to the disabled person.)

I noticed too how when someone is hurt, consideration for modesty gets tossed out of the window. When I was a freshman in college I had a bad seizure one morning. All I was wearing was a small pair of athletic shorts (fortunately, it wasn't my underwear). I woke up in a lot of pain with a crowd of people staring at me on the floor. For a guy it's not that big of a deal, but no one thought to close the door, or cover me up, or anything. It's like, "Hey, let's all stare at the mostly-naked bloody guy." All the time you see on TV how injured people, in various states of undress or just unflattering situations are indiscriminately filmed without their permission.

 

[kirsten]

There is some tendency for people to treat others who are incapacitated as objects, or just impersonally (like when someone speaks to a disabled person's companion, rather than directly to the disabled person.)

This is a seriously good point, and one I haven't seen discussed here before. It's also not something I've ever even considered. I hope I remember to come back to it in the morning, because now I'm too medicated to think. I hope this spurs a discussion, though.