Created by and for people with physical disabilities.

Disability of the Month: Epilepsy

Jun 30, 1999

This is an archival transcript of one of our past meetings. We don't have scheduled topical meetings anymore, but we're not opposed to the idea of bringing them back if someone is willing to commit to hosting them on a "long term" basis.

Participants already present:
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ROCK-: welcome kim
Kim^^: :)
Lonewolf: Is anyone else coming?
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ROCK-: not too many lonewolf
Lonewolf: ok
Lonewolf: Hello eveyone
Lonewolf: welcome to tonight's meeting
Lonewolf: Our topic tonight is epilepsy
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Lonewolf: and ROCK has agreed to give the meeting
ROCK-: yes
Lonewolf: So ROCK I am handing the floor over to you
ROCK-: thank you lonewolf
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ROCK-: lets wait a couple of miutes,before i start
ROCK-: welcome wacky
ROCK-: welcome woz
ROCK-: welcome T_J
ROCK-: welcome angel
ROCK-: well shall we start
ROCK-: ok
Lonewolf: go on
ROCK-: how many of you have epilepsy
Kim^^: i
Mooooooo: me
ROCK-: I would like to open the floor for questions
wacky: not I but had bad siezure all last summer found out was meds causing it
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T_J: Thwy think I had when little, but no seizures or anything, just suspect brain waves.
ROCK-: that is one of over 30 ways to have a siezure
wacky: was a scary ex perience 4 months b4 the discovered prob
ROCK-: thereare many ways to have an attack
Lily: desribe some rock?
ROCK-: Gran mal,is a large siezure,where the whole brain is affected
ROCK-: yes lonewolf
Lonewolf: is this the type you have?
ROCK-: yes
Lily: u get a nap?
Lily: after the seizure?
ROCK-: thats for sure,until you wake up and feel like a truck hit you
IrishGen: what are we talking about?
Lily: ew
ROCK-: epilepsy
ROCK-: wacky
IrishGen: Oh
ROCK-: wacky
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wacky: i had petiet mals but most said that id disapear and I had time lapse when I CAME BACK
ROCK-: the causes of a siezure is really a guess by most doctors.
wacky: Its a whole summer I cant recall
ROCK-: reader13
Reader_13: Are there any long range effects?
ROCK-: yes,me for example should not be in a stressful situation
ROCK-: Kim
Kim^^: i have both grand mal and petit mal
Kim^^: grand more often
wacky: I cant remember last summer
ROCK-: me too,did they pin point what triggers yours
IrishGen: bbl everone
Kim^^: me what triggers i don't know that they ever did but i iknow lots
ROCK-: ok glad you stopped in
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Kim^^: no sleep is a guarantee
IrishGen: Thank you ROCK
ROCK-: not at all
IrishGen: Goodbye
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ROCK-: yes T_J
T_J: What different types of epilepsy are there?
ROCK-: There are at least 30 types known so far
T_J: I have head of genetical, but I know there are others too.
ROCK-: some people can't look at flashing lights
ROCK-: Kim
Kim^^: 30 different types of epilepsy or types of seizure?
T_J: epilepsy
ROCK-: seizures
ROCK-: anny
Lonewolf: Excuse me
Lonewolf: ROCK?
ROCK-: yes
Lonewolf: would you like to stck to the rules
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anny1: i have partial complex(petite mal) and have had grand mal
Lonewolf: if so I will enforce
ROCK-: yes,i think weshould
ROCK-: ok
Lonewolf: ok rules in effect
Kim^^: repeat rules please
ROCK-: yea
Lonewolf: type ! for a statement and ? for questions
Lonewolf: ROCK will call on you
ROCK-: right
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ROCK-: does anyone have a question
T_J: Anyone heard of the ketogenic therapy?
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ROCK-: Reader_13
Reader_13: What types of medication are in use today for epilepsy?
ROCK-: it depends on he person
ROCK-: lonewolf
ROCK-: you have a statment?
Lonewolf: I have heard of ketogenic-long time ago-why don't we all let ROCK start his presenttion then ask questions
ROCK-: sounds fine to me boss
T_J: Ok with me...
ROCK-: Epilepsy is greek for overcome
ROCK-: Brain cells have electrical currents going through them
ROCK-: when the current is affected a siezure may start
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ROCK-: flashing lights,certain sounds and too much stress are good causes of a siezure
ROCK-: People look and act as normal as anyone on the street untill something triggers a siezure
ROCK-: yes lily
Lily: is christmas a bad time then?
ROCK-: yes
ROCK-: and being a speaker can kill you
ROCK-: :)
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Lily: lol
ROCK-: does anyone have a question,or comment?
ROCK-: lily
Lily: what do you do if someone is having a seizure?
Kim^^: !'
ROCK-: that depends on a number of factors
ROCK-: Kim
Kim^^: no go ahead i forgot sorry:(
ROCK-: ok
ROCK-: epilepsy is still a subject doctors are studing
ROCK-: Lonewolf
Lonewolf: Stay calm-keep the persons head turned to the side do not force anything into the persons mouth this is for grand mals
Lonewolf: time the seizure
Lonewolf: and if it is prolonged call 911
ROCK-: anny1
ROCK-: comment anny1
anny1: it is a common myth that ppl will bite or swallow tounge
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anny1: often bite tounge acltally
anny1: actually
ROCK-: that is so missunderstooh
ROCK-: d
ROCK-: Reader_13
Reader_13: What is considered prolonged?
Reader_13: In timing the seizure...
Lonewolf: no breathing for over 3 minutes
ROCK-: up to a minute and a halfis not unusuall
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ROCK-: question Anny1
anny1: i would like to know what type of aura's you guys have?
ROCK-: I have none myself
Lonewolf: My son used to say he had a funny feeling
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ROCK-: Angel_27
Angel_27: I had 2 friends a few years ago and they had epilepsy, and their seizures seemed to be caused by stress more than anything else
ROCK-: yes,mine are also
ROCK-: Kim
Kim^^: thi thought i had an aura but the doc said it was a smallwer seizure
ROCK-: anny1
anny1: stress and lack of sleep cause most of mine
anny1: and
anny1: sometimes i have a strange smell
ROCK-: Kim^^
Kim^^: stress ay trigger one but lack of slee[p alllllways trigger a series
ROCK-: intrepid
intrepid: I rarely have them, but when overtired or when I see a flashing commercial, they'll come on....I had trauma-related ones for years
ROCK-: that seems to be one thing us epileptics have in common,stress,and flashing lights
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ROCK-: anny_! did it have a metal taste?
Kim^^: nite
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ROCK-: 65% of siezures are unknown
ROCK-: Woz
Woz: what is the metal taste
ROCK-: when I am about to have a siezure I taste something like metal,or the detist office
Woz: k
T_J: What different kinds of treatments are there?
intrepid: I always have tingling in face
intrepid: and a sudden increase in amount of sugar I eat can give me auras
ROCK-: mostly a medical mixing of different medications
ROCK-: Woz
Woz: anyone elce have a metallic taste b4
ROCK-: Reader_13
Reader_13: What is auras?
Lily: is the open brain surgery of help, where patient is awake?
T_J: Sounds risky...
ROCK-: it is for some
ROCK-: yes,very risky
intrepid: auras are feelings you get b4 seizure
Reader_13: Thanks...
intrepid: np
ROCK-: Like a lite that flashes,after you have that same circle of lite
ROCK-: Again not everyone has this
ROCK-: can someone here share their experience
ROCK-: Who else here has siezures
intrepid: mine were related to undisclosed abuse, with disclosure, they disappeared, although I do have CP and had them from that as well
intrepid: but infrequently
ROCK-: Thanks intrepid
intrepid: :)
ROCK-: Lonewolf
Lonewolf: My son had seizures for years from a cyst in the right temporal lobe
Lonewolf: he ranged the whole gamut from grand mal to temporal lobe siezures
ROCK-: Did he have surgery
Lonewolf: yes and has not had one since except a possible one during a tatoo
intrepid: oh wow
ROCK-: Does anyone here have them from stressfull situations
intrepid: I did, I was having them 14 hours daily
ROCK-: So even a tatoo caused him to titen up an have a siezure!
intrepid: dropped out of high school for a year
intrepid: then started college
Lonewolf: pain induced
ROCK-: Very interesting,pain indused is a little different,thanks
Lonewolf: welcome
ROCK-: would sombody share with the group about gran mal in their lives!
ROCK-: Lonewolf
Lonewolf: second hand my son
Lonewolf: we stayed terrified and he stayed angry
Lonewolf: when he took pheno barb it was a nightmare
Lonewolf: totally different personality
Lily: night all
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Lonewolf: he wanted to do everything the doctor said he couldn't do
Lonewolf: esp drive
ROCK-: thanks
ROCK-: Woz
Lonewolf: he lost his childhood memories after surgery until just a couple of years ago
Woz: thanks rock bye all
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Lonewolf: some things he still doesn't remember
ROCK-: yes angel
Lonewolf: ROCK desribe yours
Angel_27: rock, u said yours was caused by stress right?
ROCK-: some,yes
Lonewolf: does anyone have anything else?
Lonewolf: Thank you ROCK
ROCK-: strob lights will cause me to have one in less than ten seconds
Lonewolf: enjoyued the meeting
Lonewolf: round of applause for ROCK
Lonewolf: meeting is closed
Reader_13: applause...
ROCK-: I think I'll have a siezure now:)