#its really late rn and i'm exhausted so this post is very short

[marculees]

Happy International Epilepsy Day to all of my followers and fellow epileptics!

For those who don’t know, epilepsy is a neurological condition which affects the brain and is most commonly attributed to seizures though holds other effects such as chronic loss of energy, memory, motor and cognition errors. There are different types of seizures and depending on which form of epilepsy someone may have, their seizures can be different or non-existent. I myself suffer from photosensitive epilepsy but there are more types out there and I wanted to make this post to share a little bit of info and help make others more aware of the condition and what to do in the case of someone having a seizure, as well as to be made aware of some triggers. More than 50,000,000 people are diagnosed with epilepsy across the globe and it is a condition which is not spoken of enough in schools, communities, and other aspects and institutions in our lives. I encourage any people who suffer from epilepsy to share their own tips and experiences for both those experiencing it for themselves and to educate others on how to care for a loved one with epilepsy. This is a really short and mostly personal post so I’d love to see it grow!

Some types of epilepsy

Photosensitive epilepsy: This is the type I suffer from! It is triggered by flashing images and other types of stimuli which f*ck with our heads (think of those weird optical illusions or hypnosis things). These send “KJASGLDKJVGLKSJVGSJ” signals to our brains and can cause us to have seizures. You ever wonder why some (and I wish more did) TV shows or other forms of visual media put a flashing warning at the start of their programme? Its for things like this! This is just a very personal trigger but for some weird reason playing the Wii makes me have seizures?? Something to do with the speed patterns of the game? Don’t ever deliberately flicker lights on and off or show a photosensitive epileptic a flashing video/gif, or else I’ll personally hunt you down... :) *cough*please tag flashing gifs with trigger warnings*cough* do not use #epilepsy because that tag has been ruined for the epilepsy community and we had to make up our own since that was just a spam of triggers rather than actual support and fellow epileptics thank you*cough*

*I’m not confident in describing other types so if any other epileptics would like to describe their own then that would be great! Photosensitive epilepsy affects only roughly 3-5% of all epileptics so there are definitely more common types to be explained >.<

Some types of seizures

There are more than 40 different types of seizures but these are some of the most common. Some are easier to spot than others and everyone’s case is different. Some seizures can involve a mix of different types so it is important to know how each affects the individual. It is always best to ask the person you know for what type they have most often, but keep in mind that while they may look fully conscious during a seizure, they are not and so they won’t remember the actual act itself but rather the before and afters!

Absence seizures: These seizures can often go unnoticed, as the person appears to space out. However, they are rarely a once-off incident and have a tendency to happen multiple times a day which can lead to confusion, loss of time and information absorbing, and general feelings of unsteadiness. In settings like schools or meetings where attention is crucial, a person who experiences these types of seizures is at a disadvantage because their loss of consciousness can lead them to losing out on valuable information and disrupt their work. While these seizures do usually last a few seconds, they can be worrying for the person because afterwards they are aware they have just have just had a seizure and yet since it is not very visible, it can be hard to share their worries with others. They are not just people daydreaming or having their minds wander, they are seriously spacing out of consciousness and should not be ignored or dismissed for the lack of visible symptoms >.<

Grand mal/tonic-clonic seizures: A more frightening sight, tonic-clonic seizures are the ones often dramatised by media and stereotypes alike. These are the types of seizures where a person will suddenly collapse, followed by stiff and jerky movements which can last up to a minute or few. In simple terms (and because I hate science lol), the brain is being overloaded with signals and can’t keep up! These are the types of seizures I experience and while I can’t speak for everyone, I usually show some warning signs before I have one; I’ve been told I go very very pale (and I’m a ghost already), my lips will also go white and my pupils will dilate while staring into space before I collapse. My limbs tighten and stiffen up (the tonic phase) and I’ve been told I have a very strong grip! Then my arms in particular will begin jerking (clonic) and while I might look like I’m having a little breakdance, the last thing I want to do is break/hurt something. These seizures involve a LOT of energy and afterwards, the person will usually fall asleep because their muscles and brain have been working at 100000% and are very sore and tired, especially if they have injured themselves during it. I had one at a sleepover while getting up to go to the toilet in the middle of the night and I ended up falling against the tiled wall in the bathroom and my head and jaw were in pain for days after :(

*There are others such as auras/partial seizures, but I’d rather let someone more experienced and knowledgeable explain them!

How to help someone having a seizure

While it is instinct to jump in and help, you should NEVER try to stop a seizure. You should let the person seize, but if it lasts for more than five minutes then you should definitely call an ambulance! The best thing to do is to make the environment as safe as possible so that the person does not injure themselves while seizing. This can include moving away furniture (e.g. tables) which may cause injury if they hit off them, placing something soft under their head (e.g. pillow, coat), turn them onto their side (especially if they are vomiting too), and what I think is most important is to stay with them till the end. I’ve had nightmares of people laughing and recording me having a seizure, so if possible, try to get other people to give some respect and privacy and leave the epileptic and attendant in peace. The tonic-clonic seizures are very embarrassing for the person and can involve more than just jerking movements but full-on loss of control over bodily functions too. It sounds yuck but when I first started having seizures, I’d lose control of EVERYWHERE and would somehow manage to both piss and shit myself while vomiting at the same time (weird flex, but okay). The epileptic is totally unaware of any of this until they wake up later and have someone explain to them, so try to also remember how long the seizure lasts and note their signs before and what then happened. It helps a lot when we then go to visit our neurologist and also for future reference to educating others on our own personal cases! There is a weird urban legend that you should put a spoon in the person’s mouth while they have a seizure but DO NOT do this, in fact don’t try to touch their mouth at all. Just give them space and give them comfort and reassurance afterwards, because not only is frightening to watch, but its also frightening to not know what happened at all. Let them lie down and rest because its very likely that their head and entire body will be sore after moving so much and so tightly too, so save a hug for later <3

Prevention, treatment and hope?

Fortunately, a lot of people grow out of their seizures as they get older! While there is no telling of what causes the condition, you’ll be happy to know that it may not haunt you or your loved one forever. I had my first seizure when I was eight years old and now I’m almost twenty and have been seizure-free for four years! While the condition never fully leaves, the seizures can become less common and sometimes stop altogether. How we measure this? Tests and scans such as an E.E.G are used to identify the brain’s responses to triggers and how strong or weak they are. E.E.Gs are like visiting a really shitty hair stylist who sticks a load of wires on your head and then proceeds to make you stare at a flashing light lmao the weird glue they use is so gross and I immediately want to wash it out after. Those who suffer from epilepsy will take medication (usually pills though medicinal c*nnabis has become popular) to lower their risks of having a seizure, but it is important to note that these medications never imply prevention or cure. Just because someone is taking medication does not mean they won’t have a seizure, they are just less likely than without! In some extreme cases, surgery can be an option and part of the brain may be removed.

Sadly though, not everyone is lucky enough to grow out of their seizures. Those with a chronic condition can have up to multiple seizures a day and never find peace. There is no definitive cure yet but the best thing to give to these people is hope and support. Let them know that you care for them because in a world that suddenly becomes non-existent to them for those few seconds or minutes, its nice to know that someone exists and loves them regardless of their condition. 

Epilepsy affects everyone differently and not only are there medical implications, but social also. Some people will be less vocal about their condition to employers and fear losing employment opportunities, for example. As a young person, I rarely go on a night out and actively avoid nightclubs (which I don’t like the idea of anyway) but it can lead to a feeling of exclusion and isolation from friends and peers, along with dating. Its small things that unless you have to worry about, others don’t really notice. From my own experience, I now try to avoid going on drives on sunny days because I have had seizures from the sun flickering through trees or bouncing off windows and shiny surfaces. In Ireland anyway, as long as I’m seizure-free for one year then I am allowed to drive but I would still be fearful and find it hard to ever travel alone. There are many things I can think of but these come to mind first because they affect my daily life a lot; I’m a student who commutes to college every day and back, and the town is known for its nightlife and partying. Some people have other ‘habits’, such as taking showers over baths in case they seize and you know, drown themselves. We all take preventive measures but there is no cure or safety belt. Like I said, it affects everyone differently so always consult the person you know. It lets them know you care and it helps you to help them too!

There are several great epilepsy-centered blogs on Tumblr and I’m too shy to tag them here... However just know that a whole supportive community is behind the ‘#actually epileptic’ tag and that you are not alone in your condition, or that if you have any further interest or questions then there are others out there who can help share their knowledge and experience with you. Thank you for reading all of this and I wish you a happy and seizure-free day <3