what it’s like having epilepsy

disclaimer: this is my experience, and my experience only with having epilepsy. this is an illness that affects everyone differently, and i am just telling my story.

epilepsy can develop in any person at any age, myself had my first seizure and was diagnosed with epilepsy when i was 16. almost 1% of the entire population will develop epilepsy during their lifetime. that means approximately 60 million people worldwide.

my seizures:  i have generalized tonic-clonic epilepsy, this means i’ll get the seizure people think about when they think about epilepsy. this seizure involves the entire body, and it is called grand mal seizure. i tend to lose consciousness, so i fall down wherever i am, then i’ll start shaking and moving around, all muscles are being used, so i am really tense. after about three minutes of shaking and having cramps i’ll go into a deep sleep. this is because my body has used up all it’s energy. when being hospitalized after a seizure, and the medical staff have taken my blood sugar levels, they have been so low that you can’t read them. after the deep sleep (lasts about 20 minutes) i’ll wake up having amnesia and being confused. i am also exhausted and i can not speak very well (i had a seizure at work last year, in an english speaking business, and i had forgotten how to speak english, which made it quite hard). i have the worst migraine i have ever experience, head hurting so much all you want to do is vomit. after a seizure all i want to do i sleep.

you might have a seizure once in your life, provoked by illness or drug use, but you’ll only be diagnosed with epilepsy when you have two or more unprovoked seizures. i had my first grand mal seizure in january 2007, i woke up at the hospital with memory loss and a heavy migraine. my doctor said that i might be suffering from epilepsy, but that he could not know for sure until i had my second seizure. after four months, it came and in april 2007 i was diagnosed with epilepsy. that was the start of a long journey with tests, trying to find medication and mostly being tired.

in the eight years of having epilepsy, i have tried five different medications for treating it, all of them have helped me not having a lot of seizures, but they have all had side effects. those include not being able to concentrate, being so tired you can not focus, having no energy at all, gaining weight, stuttering, depression and being more forgetful. since epilepsy is a neurological illness, the medication will effect your brain in certain ways which in my experience is almost never positive. i am currently trying to get my doctor to agree with me when it comes to quitting my current medication (fycompa), as i would prefer to have a seizure now and then, instead of all the side effects.

the problem with me and my epilepsy is that i know very little about the situations i have been in where i have been suffering from a seizure. i only know what people around me tell me, and since they are mostly strangers, i feel people are scared to speak about it, they do not share a lot of information with me or the others around them. i have no recollection of what has happened, and would really want to know. i have had seizures in a lot of public places, ending up with me waking up at the hospital not knowing what has happened. this is a very strange feeling that would probably be helped if i had known what had gone on.

so, how do you help someone who is having a seizure?
some people who have epilepsy have a card in their wallet with information about their seizures or a necklace with the epilepsy-symbol on it. i used to wear the necklace, but it had no effect, as nobody recognized the symbol. there are some steps helping a person who is having a seizure:
1. keep calm
2. time the seizure (if a seizure lasts longer than 5 minutes, you should call the ambulance)
3. protect the persons head
4. DO NOT put anything in their mouths (they used to do this, cause they thought it helped stop the seizures)

this is the epilepsy symbol:

i am quite lucky when it comes to epilepsy, as i rarely get seizures and it does not really affect my daily life (except for taking medications), but the risk of having a seizure is always there, so i have to take pre-cautions. i am not allowed to drive, bathe or do any sort of extreme sport. the only thing i tend to do is shower in the evening, so i am not at risk having a seizure in the shower (it has happened before).

but there are other types of epilepsy, and some get seizures several times a day. there are lots of ways to treat epilepsy, like with a ketogen diet, planning everything you do, having an operation or taking medications.

a myth about epilepsy is that everyone reacts to blinking lights, this isn’t true. most people with epilepsy do not know what triggers their seizures. i sadly do not know what triggers mine.

i hope you all learned a bit about epilepsy, and you might also enjoy this list, listing the famous people who suffered or is still suffering with epilepsy.

how would you react to someone having a seizure?


ps: there are lots of videos about this on youtube, here you can also see people having seizures and learn more about different types of epilepsy. i would also recommend reading here (if you know norwegian) and here (if you know english).