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What No One Told Me When I Started Having Seizures

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Having a seizure is definitely not nice (this being an understatement). Neurologists are able to give you a lot of information about seizures; after all they are the medical experts! However, sometimes it takes real-life experience of these things to take it from the medical textbook to everyday life. So after talking to other people, and using my own experiences, here is what didn’t they tell us when we started having seizures.

Your memory will turn to mush

I know “mush” isn’t a technical term, but we are trying to get away from the textbook, remember? After having a seizure it is very common to be confused and disoriented. Yet if we try and fight through this once we have come round, it is still there, often for longer than we care to admit. However, it is the general memory issues that get forgotten about, the walking into a room and not knowing why you have entered that room kind of thing. This happens to the best of us; seizures can just make it a more common occurrence, especially if it is one of those days! I have found many people struggle with their day to day memory when having seizures, which is not surprising. If we think of a seizure like a computer overloading (no, we are not robots!) it is almost like rebooting a computer, meaning it can take a while for everything to “open up” again.

Other relevant stories:
Medications for Epilepsy
Things You Can’t Do with Epilepsy
Is Epilepsy an Autoimmune Disease 

You have an appointment in two weeks’ time at 1:30 p.m.? Then you better write it down (in more than once place, and set alarms) if you have any chance of arriving!

You’ll have to redesign what “safe” means

We think about attempting to stay safe every day. The consequences of having a seizure at the “wrong time” can be dangerous and has caused an injury on multiple occasions. Staying safe is something your neurologist will mention, and the idea can be stressful. It could mean not going anywhere alone, even if this can be hard when you’re 19 years old, or having to cancel plans after a big seizure so you have time to recover. Redesigning “safe” can often be one of the hardest parts because of its restrictive nature, but it can mean even more when a plan all comes together! In a nutshell, everything needs to be assessed within an inch of its existence, with all aspects considered.

You want a nice hot relaxing bubble bath after a long day? Then you better be prepared for your family constantly shouting up to make sure you’re OK.

Little things become a big celebration

I am all for the little victories in life, and seizures are no exception. Every day that doesn’t include a seizure is a mini celebration. When having a seizure is fairly common, it makes hitting a “seizure free” milestone the best thing in the world! Yes, I know we are often not in control of these things, but it still feels like a massive sense of achievement when we reach a goal. For myself, the time when I reached a week without a seizure earlier in the year was a very good week indeed! On the other hand, coming round from a seizure can also be a victory (it’s the little things!) and knowing your next destination is not a blurry ambulance trip to a bustling emergency room is always a big relief.

Going on a day out with friends or family? Fingers crossed I don’t have a seizure and feel out of it for the rest of the day.

It will become second nature

Not only will life with epilepsy likely become second nature to you, but it will become second nature to the people around you — or at least the people you are around often enough. The side effects of seizures will also become your new norm and most probably be expected. For those of you who have never had a seizure (firstly, please keep it that way!) it is exhausting and confusing and annoying. When people say they feel like they’ve run a marathon in a matter of minutes after having a convulsive seizure, they are not kidding! Can you imagine every muscle contracting and relaxing without your consent? Yet even when a seizure isn’t happening, or even if one isn’t imminent, there is still “seizure activity” going on upstairs most of the time. This could be a dull constant headache or just being confused and a little “out of it.” Unfortunately seizures have a habit of sticking around.

A thunderstorm in your brain? Yeah, that sounds about right…

You will question the future

Everyone will think about the future, surely this is completely typical? However, when you have seizures you might think about more specific things. How will I get the career I want if I cannot stay conscious? How will I look after my children? How will I manage? Despite so many unanswered questions (welcome to the medical world) this will not make seizures disappear and run for the hills, nor will it actually solve the Rubik’s cube of life. However, at times it can feel like epilepsy is a massive barrier that makes the future daunting, making us question some of the simplest things. Whether we question the future because of our own safety or because of passion, surely we will find a way once we are faced with a situation.

The future? Let’s hope for fewer seizures and the ability to succeed regardless of them.

Follow this journey on Life as a Cerebral Palsy Student.

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Getty image by Ivelin Radkov.

Originally published: January 2, 2018
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