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hello all and welcome to my first epilepsy awareness month thread!!
overall tw for seizures and medical stuff, any other triggers will be listed in individual tweets
this will be on the basics of epilepsy: what a seizure is, the causes of epilepsy, and other basics.
overall tw for seizures and medical stuff, any other triggers will be listed in individual tweets
this will be on the basics of epilepsy: what a seizure is, the causes of epilepsy, and other basics.
First off, some statistics for those that like numbers.
65 million people around the world have epilepsy.
3.4 million people in the united states have epilepsy.
1 in 26 people in the US will develop epilepsy at some point in their life.
there are 150,000 new cases of epilepsy
65 million people around the world have epilepsy.
3.4 million people in the united states have epilepsy.
1 in 26 people in the US will develop epilepsy at some point in their life.
there are 150,000 new cases of epilepsy
in the US each year.
1/3 of people with epilepsy live with uncontrolled seizures because existing treatments do not work for them.
6/10 people with epilepsy have no known cause.
TW death for this next one
about 1.16 in 1000 people with epilepsy will die from sudden unexpected
1/3 of people with epilepsy live with uncontrolled seizures because existing treatments do not work for them.
6/10 people with epilepsy have no known cause.
TW death for this next one
about 1.16 in 1000 people with epilepsy will die from sudden unexpected
death in epilepsy, or SUDEP.
What is epilepsy?
epilepsy is a chronic disorder characterized by recurrent, unprovoked seizures. one is diagnosed with epilepsy if they have two or more unprovoked seizures (or one with the likelihood of more) not caused by a known and reversible condition like low blood sugar.
epilepsy is a chronic disorder characterized by recurrent, unprovoked seizures. one is diagnosed with epilepsy if they have two or more unprovoked seizures (or one with the likelihood of more) not caused by a known and reversible condition like low blood sugar.
What is a seizure?
In the brain there are nerve cells. these are supposed to either excite or stop other brain cells from sending messages. there's usually a balance, but in a seizure either part or all of the brain's cells have too much or too little activity, leading to surges
In the brain there are nerve cells. these are supposed to either excite or stop other brain cells from sending messages. there's usually a balance, but in a seizure either part or all of the brain's cells have too much or too little activity, leading to surges
of electrical activity, which has been likened to a lightning storm in the brain, causing the seizures.
What Happens During a Seizure?
There are multiple parts of a seizure. Some people experience them all and some only experience one part.
In the beginning, some have a prodrome. this is usually a strange feeling or change in behavior hours or days before a seizure. For example,
There are multiple parts of a seizure. Some people experience them all and some only experience one part.
In the beginning, some have a prodrome. this is usually a strange feeling or change in behavior hours or days before a seizure. For example,
my mom's prodrome a few days before was always smelling bug spray.
The second part some experience is called an aura. it was recently discovered that this is also a seizure occuring in part of the brain. there are lots of different feelings someone may experience in an aura, but
The second part some experience is called an aura. it was recently discovered that this is also a seizure occuring in part of the brain. there are lots of different feelings someone may experience in an aura, but
some of them are
-déjà vu
-odd smells, sounds, or tastes
-vision issues
-generally strange feelings
-fear or panic
-dizziness
the middle of a seizure is called the ictal phase. there are many different types of seizures (over 60!), which I'll talk about in my next thread, but
-déjà vu
-odd smells, sounds, or tastes
-vision issues
-generally strange feelings
-fear or panic
-dizziness
the middle of a seizure is called the ictal phase. there are many different types of seizures (over 60!), which I'll talk about in my next thread, but
I'll talk about the ones my mom and I have experienced. i have absence seizures, or staring spells. these affect the whole brain and they make me stare into space with no consciousness for about 10-20 seconds. my mom had them too when she was younger. my mom also had tonic-clonic
or grand mal seizures, here she would fall unconscious to the ground and her muscles would spasm and release almost rhythmically for about a minute (longer before she had an implant) and she would have trouble breathing.
after the seizure is the postictal phase. this is the
after the seizure is the postictal phase. this is the
recovery phase. some people, like me, return immediately to normal, only confused if we missed something during the seizure. some people, like my mom, are confused and fatigued. some people get violent in their postictal phase.
Who gets epilepsy?
anyone with a brain. there are risk factors though. some are a history of brain injury or neurological illness, being born prematurely, or being autistic.
anyone with a brain. there are risk factors though. some are a history of brain injury or neurological illness, being born prematurely, or being autistic.
Do people always have epilepsy?
Some people, like my mom and I, do. many kids grow out of their epilepsy if they're diagnosed by the age of 12 and they're easily treated. i was both, but genetics was not on my side.
Some people, like my mom and I, do. many kids grow out of their epilepsy if they're diagnosed by the age of 12 and they're easily treated. i was both, but genetics was not on my side.
TW injury , death
Is epilepsy dangerous?
yes. even if you don't have convulsive seizures, you are at higher risk for stroke and COVID-19 complications. anyone with epilepsy can die from SUDEP. seizures put you at risk of injury, drowning, and even being arrested for having one.
Is epilepsy dangerous?
yes. even if you don't have convulsive seizures, you are at higher risk for stroke and COVID-19 complications. anyone with epilepsy can die from SUDEP. seizures put you at risk of injury, drowning, and even being arrested for having one.
What should I do if someone has a seizure?
for seizure first aid, see this infographic by @EpilepsyFdn made possible with funding by the @CDCgov. (alt text included)
for seizure first aid, see this infographic by @EpilepsyFdn made possible with funding by the @CDCgov. (alt text included)
Some good organizations for more information about epilepsy are:
US:
@EpilepsyFdn
@CureEpilepsy
UK:
@epilepsysociety
@youngepilepsy
@SudepAction
Others:
@ceaofficialnews
@epilepsyaust
@SwaziEpilepsy
and a shout-out to my local affiliate of the epilepsy foundation,
US:
@EpilepsyFdn
@CureEpilepsy
UK:
@epilepsysociety
@youngepilepsy
@SudepAction
Others:
@ceaofficialnews
@epilepsyaust
@SwaziEpilepsy
and a shout-out to my local affiliate of the epilepsy foundation,
which is very near and dear to my heart, @efkentuckiana.
my next thread (next week) will be on different types of seizures, and in the meantime if you have any questions you can dm me here!!
my next thread (next week) will be on different types of seizures, and in the meantime if you have any questions you can dm me here!!
