Useful Notes / Epilepsy

As can be seen with trope names such as Epileptic Flashing Lights and Epileptic Trees, the Hollywood depiction of epilepsy tends for the dramatic - and innaccurate: Flashing lights cause immediate loss of consciousness and seizures with intense muscle convulsions.

In reality, epilepsy is much more variable. For starters, only a minority of those with epilepsy have seizures triggered by flashing lights or any other environmental input, and it is known as Photosensitive Epilepsy. Usually seizures occur at random purely due to internal workings of the brain, simple as that.

Second, there are many types of seizure and a wide variety in seizure frequency. Some people just "blank out" for a few seconds without anyone else even realizing he or she had just been through a seizure. Involuntary muscle movements in seizures have a great deal of variance. Muscle spasms in a seizure might be limited to slight shakiness in one hand. It might also not be simply random spasms, but instead for instance repeatedly lowering and raising an arm. The most dramatic seizures with a person falling down on the ground and thrashing around are only one of the types, and the people who have this kind every twenty minutes are in the most extreme minority.

There is also temporal lobe epilepsy, where seizures can present as dissociative episodes and/or hallucinations/seeing visions/ Hearing Voices or music or sound, and which is notorious both for misdiagnosis (as a dissociative disorder such as fugue, Borderline Personality Disorder, or Multiple Personality Disorder due to dissociation, as schizoaffective or schizophrenic due to hallucinations/visions/voices/music/sounds), creating compulsive artistic behavior specifically around writing/painting/drawing/composing music/all of the above, and for violence (as the seizures are far less dramatic/obvious, and yet someone in one is just as unresponsive to commands - including those from authorities or law enforcement or parents or whomever - as someone having a grand mal seizure - yet their behavior is often misread as threatening or willfully disobedient, and you can see where that can go with Abusive Parents or with police, for example) note 

Anyone who has a brain may have a seizure. Animals can have seizures. In most cases the exact cause is unknown, and although most people learn to detect the signs of onset, some never seem to pinpoint the signals.

Use of alcohol, cocaine/amphetamines/related drugs, or PCP (or alternately Going Cold Turkey from alcohol or from the benzodiazipines such as Xanax or Klonopin or Valium) can precipitate a seizure even in someone without epilepsy, make medications less effective in diagnosed epileptics, and/or lead to a "worse" form of seizure (e.g. a normally "petit mal" person has a temporal lobe seizure or Convulsive Seizures.)

A genetic tendency or suffering brain injury may play a factor in developing seizures. Many people with epilepsy are able to control their seizures with medication. Brain surgery is considered a last resort, and only for the few people who have epilepsy concentrated in one part of their brain.

Stopping a seizure state in progress is something that can only be done in a hospital, and due to the risk of death doing so involves (the only way to do it involves high dose benzodiazipines - meaning that even if you've stopped the seizure, the person's central nervous system is highly depressed) it is almost only done in cases where the seizures themselves carry a risk of being fatal (e.g. status epilepticus). Anticonvulsant and/or cannabinoid treatment can prevent/reduce seizures if initiated, tolerated, and properly maintained, but takes anywhere from 48 hours to two weeks to take full effect, so the idea that one can just give someone an extra dose of "their meds" to stop a seizure in progress is Worst Aid. It takes several hours for the extra dose to register in the brain anyway, and the results tend to include more seizures, indescribable neural pains and full-body-paralysis for hours longer than the seizure would have lasted.

One in 26 Americans have epilepsy, so you almost certainly know someone with this disorder whether you know it or not. You may even have it without knowing it until your first seizure event. This is one of the reasons that the inaccurate portrayal of Convulsive Seizures and inaccurate seizure first aid is so dangerous. More people die in the United States from epilepsy than breast cancer. Additionally, even people who don't have epilepsy can have seizures for all sorts of reasons- the most common being head injury, high fever, brain infections like meningitis, drug abuse, electric shock, eclampsia, or abnormal levels of glucose of sodium or glucose. 90% of people with seizure disorders live in the developing world.

First aid for epilepsy is not too difficult. The goal is to keep the person safe until the seizure stops naturally by itself. Holding someone down or restraining a person who is having a seizure is dangerous and can lead to combative behaviors. It is known for them to get parts of their body trapped in furniture while becoming so tense that they cannot be moved, in which case, you will simply have to wait. Someone having a seizure cannot swallow their tongue, although they may bite it. Never, ever put any foreign object in their mouth, since they may choke, break their teeth, and in the case of your fingers, it has been known for them to bite down to the bone. Some people with epilepsy have medications that can be taken in the aftermath of a seizure to prevent further incidents (like Ativan) or devices like a vagus nerve simulator.

When providing seizure first aid for convulsions or generalized tonic-clonic seizures, these are key things to remember:

  • Keep calm and reassure other people who may be nearby.
  • Don't hold the person down or try to stop his movements.
  • Time the seizure with your watch or phone.
  • Clear the area around the person of anything which may hurt them or fall on them.
  • Loosen ties or anything around the neck that may make breathing difficult.
  • Put something flat and soft, like a folded jacket, blanket, or towel, under the head.
  • Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers.
  • Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally.
  • When the person regains consciousness, they will be in a postictal state, and will probably be tired and confused. They may even try to continue with whatever they were doing before the seizure. Tell them they've had a seizure - you may have to do so repeatedly since epileptics have been quoted repeatedly asking, "Are you sure?"
  • If a person injures themselves during a seizure, they probably won't even be aware of it at this point. Epileptics have been known to try and walk with broken bones; if they are injured, try to keep them from worsening any injuries.
    • On the converse side of things, now is a great time to snap any broken nails back into place.
  • Offer to call a taxi, friend, or relative, to help the person get home. Since they are not fully aware of their surroundings, it is wise to ask repeatedly.
  • Check to see if a person is wearing any kind of medical alert information (bracelet) to see if there are specific instructions.

You should call an ambulance if:

  • The convulsion lasts longer then 5 minutes.
  • Another seizure starts right after the other seizure ended.
  • The person does not start breathing or starting to wake up after the seizure.
  • The person is injured during the seizure.
  • The person is pregnant or has diabetes.
  • The seizure occurred in water.
  • The person is not known to have epilepsy (e.g. does not have epilepsy listed on a medical ID necklace/bracelet/card or In Case of Emergency (ICE) information on their cell phone).

Recognizing less obvious potential seizures/seizures:

  • Remember that temporal lobe seizures can present as catatonia, dissociation, hyperfocus, an "acid trip," personality change, or combativeness (usually if disturbed from the previous states), not just hallucinations, and they often DO NOT present as open "grand mal" Convulsive Seizures.
    • Catatonia means the person is absolutely immobile and "frozen" and "silent" yet can hear/see/feel but is unable to respond to outside stimuli - imagine "And I Must Scream" in temporary form, or if the "petrify" effect in video games were real.
    • Dissociation means a feeling of being "outside oneself" or "split from one's body." Some common descriptions of a dissociative experience is "being dropped into a deep, deep silent hole" or "floating outside of one's body watching oneself" or "feeling like life is a movie." Sometimes, this experience can go as far as functioning on "autopilot" to do things physically while "blank."
    • Hyperfocus is best described as being able to focus intensely on something, to the exclusion of everything else. Someone in a hyperfocused state, may, as an example, be so focused on writing or on the repetition of a thought pattern, that they ignore their surroundings (e.g. that the food they were warming up is catching fire, that someone is pounding on the door demanding entry). Generally, hyperfocus as a temporal lobe symptom requires the presence of other symptoms and a positive EEG because it can result, obviously, as a sole symptom of stimulant use (specifically amphetamine and cocaine use) and as a part of the autism spectrum without any connection to epilepsy.
    • The "acid trip" effect in temporal lobe epilepsy is when these symptoms combine, to form an experience that contains at least two of the above symptoms along with hallucinations - which produces an effect that is both to the sufferer and observer sometimes near-indistinguishable from a mushroom or LSD trip. These experiences have been described much the same as said drug trips have - as everything from blissful and ecstatic with almost religious overtones to the highest caliber of purely terrifying Nightmare Fuel.
    • Personality change means that someone can act very different when dissociating or hyperfocused than they do outside of an episode. This includes the next point.
    • Combativeness usually results, in the rare instances that it does, when someone experiencing the previous symptoms of an episode is severely frightened or aggressively restrained, or if hyperfocus combined with anger at a specific person or thing to make the person's anger a literal Unstoppable Rage.
  • Petit mal seizures tend to present as blackouts or "going on autopilot" with no memory of the incident, leading to their other name of "absence seizures." Unlike temporal lobe, the person isn't dissociated/hallucinating/similar usually, but often "staring into space" or "nodding out" or doing a repetitive activity on "autopilot" with no memory of where they were or what they were doing.
  • Non-generalized tonic-clonic seizures involve convulsions/numbness, but only of some locations (e.g. an arm or leg goes numb or shakes, one side of the body twitches, one side of the face twitches...) - the entire body does not fall and the person may be blacked out OR have some degree of awareness. These can easily be confused with strokes (and often happen as a result of strokes, brain tumors, traumatic brain injury, or other brain damage as well as epilepsy.)

Response to potential temporal lobe and/or petit mal and/or other seizure events:

  • Allow the person to be alone and have safe space. Especially if the person is "stimming" (compulsive self-directed behavior like rocking or fidgeting or thumb sucking or the like), "blanked out," or if they are engaged in a hyperfocused behavior, allow them to be alone and safe.
  • On the other hand, if the person is reaching out (even in a dissociated manner, such as speaking but to everyone/no one in particular or actively trying to engage a conversation), be there for them. Someone who is not entirely dissociated may find speaking to others and being "grounded" by anything from physical touch (of course, only if permitted - ASK FIRST) to conversation to doing a familiar activity to just being reassured that their experience will soon pass and is not going to harm them very helpful, and someone who is dissociated entirely may well go on "autopilot" speaking or writing or doing something else harmless as opposed to doing so in fear and lashing out.
  • Notify others that the person is having an epileptic seizure and to please respect his or her space until you are out of the place/until an ambulance arrives.
  • As above:
  • Stay with the person until the seizure ends naturally.
  • Be friendly and reassuring as consciousness returns. Do not yell at the person, but tell them they may have had a seizure.
  • Offer to call a taxi, friend, or relative, to help the person get home if he or she seems confused or unable to get home by himself or herself.
  • Someone experiencing combativeness as a result of a seizure state, barring their doing something immediately dangerous to others like using a firearm, must be left alone and watched from a safe distance - further aggressiveness or restraint toward him or her will only worsen the situation, and the presence of anyone that may be triggering anger needs to be removed to a different location. Leaving the person alone and deprived of negative stimuli will allow the episode to end sooner, and the person to either regain conscious control or become unconscious.
    • Pain compliance (e.g. tasers, pepper spray) does not work on many people in these states because the person is often unaware or unable to respond just the same as if they were having Convulsive Seizures which can often lead to law enforcement believing "more will get results" to the point of causing death. Total or only physical (the body contorts from being tased but the person does not otherwise move) unresponsiveness to even pain stimuli should lead anyone observing to consider the possibility of a seizure state and to, instead of trying to induce compliance, protect bystanders and provide safe space.

You should call an ambulance if:

  • As above, although slightly altered:
    • The episode lasts longer then 5 minutes, UNLESS the person's events tend to do so - milder temporal lobe events often last longer than grand mal.
    • Another seizure starts right after the other seizure ended, or the person doesn't emerge from the state to any degree after their usual time to do so / if you don't know their usual time 5 to 10 minutes.
    • The person stops breathing entirely or becomes unconscious and does not awaken after the seizure, in which case you should call for an ambulance immediately
    • The person is injured during the seizure.
    • The person is pregnant or has diabetes.
    • The seizure occurred in water.
    • The person is not known to have epilepsy (e.g. does not have epilepsy listed on a medical ID necklace/bracelet or In Case of Emergency (ICE) information on their cell phone).
  • Also if:
    • The person becomes or became combative or violent, but to potentially save their life from less trained police officers, try your best to wait to make the call as one for an epileptic seizure after any combativeness or violence has ended and not to mention the combativeness or violence until you are speaking to medical professionals rather than law enforcement officers.
    • This is the person's first such event, even if they have another disorder or even another epileptic condition
    • The person is intoxicated on alcohol or other recreational drugs at the same time as having the event and said intoxication precipitated it - as there can be more or worse until the person's brain chemistry is balanced again
    • The person appears to be acting markedly different than their normal self, or appears to be sick/delirious
    • The person's consciousness is markedly lessened - e.g. they are semiconscious rather than just tired
    • The person has symptoms of a stroke.

More information about epilepsy can be found through the Epilepsy Foundation and International League Against Epilepsy.