Understanding Epilepsy Audiobook
Tara learns what it means to be diagnosed with epilepsy and how to manage her seizures and other epilepsy symptoms and triggers in this audiobook version of our award-winning comic book Understanding Epilepsy.
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Rebecca: Hi there and welcome to a special audiobook installment of Jumo’s In My Words podcast series.
At Jumo, we produce everything from comic books that explain difficult medical conditions, to videos where families share practical insight and their stories of hope. Learning how to manage life after a diagnosis can be stressful and confusing, and we aim to make that a little easier. From epilepsy and Crohn’s disease to fractures, MRIs, and lots in between, we’ve got you covered.
Alright let’s get started. Today’s story comes from our Understanding Epilepsy comic book. Listen in as Tara joins Medikidz superhero, Axon, on a journey to learn more about her recent diagnosis of epilepsy.
Tara: Okay, so I thought last month was scary when I had a seizure in front of my whole class…but after it happened again last week, it seems that it wasn't just a fluke, and it is something more serious.
Then today was even scarier when I found out it wasn't a one time thing.
Turns out I have something called epilepsy which means that a seizure could happen again!
And the more I think about it, the more scared I get! What's going to happen to me? Will the seizures ever stop? How can I remember to take medication twice a day? Can I still hangout with my friends and do the stuff I love?
What do you think Dr. Gill?
Ugh, making bubbles is your answer for everything! I need real help here, Dr. Gill! What is Epilepsy? What can I do about it? What's going to happen to…
Narrator: Deep in Outerspace at the Medikidz headquarters…
Tara: …me? Huh? Axon? Abacus? What--What's going on?
Abacus: Greetings, human designated as Tara!
Axon: Helloooo Tara! Good to see you! Heard from a colleague of mine, Dr. Gill, that you needed help understanding epilepsy!
Tara: My fish told you I needed help?!
Axon: What?! No! Of Course not! Fish can't talk at least not on your planet. We were checking in on you and saw you needed help! I was just joking about the fish.
Abacus: Analyzing Joke. Analysis complete. Not funny.
Axon: Let's start with the basics! Epilepsy is another way of saying recurrent seizures. Seizures start in the brain. And the best place to learn about the brain is…Mediland!
Tara: Mediland, of course! I was just about to suggest that. Psst, Abacus, what's Mediland?
Abacus: Celestial body designated Mediland is a planet that works and looks just like the human body.
Narrator: Inside the brain…
Axon: Behold, my favorite part of the body, the brain, the control center for the whole body!
Tara: Whoa, it's so---so---busy!
Abacus: Note: the brain controls functions such as thinking, feeling, seeing, speaking, and moving.
Brain Cell 1: Just saw a picture of a cute puppy.
Brain Cell 2: Copy that, sending message to activate feelings of joy.
Brain Cell 3: Message sent to the mouth to make adorable "Squee" noises in 3…2…
Tara: Hey, who are those guys?
Axon: Those are tiny cells called Neurons and there are millions of them in your brain! They carry the messages from the brain to the rest of your body.
Axon: See, Neurons communicate with each other by sending tiny electrical signals through your nervous system!
Tara: What's the nervous system?
Abacus: The nervous system is a network of neurons that extend throughout your whole body.
Axon: So, for example, when you move a leg, an electrical signal travels from your brain, through your nervous system, and down to the muscle in that leg. The signal tells the muscle to move and so the leg moves! How insanely cool is that!?!
Tara: It is both pretty insane and pretty cool!
Axon: Another cool fact is that the signals can travel in the opposite direction too, so your vision, hearing and sensations can tell your brain what's going on.
So if you held some ice in your left hand, for example, signals travel along your neurons to tell your brain that your left hand feels cold.
This is what normally happens.
Tara: Okay, so what happens when you have epilepsy?
Brain Cell 1: Doot, Doot, Doomed! We're all doomed! Run! Run for your liiiiivveeess. Why am I still siiiingiing?
Axon: Soooo, this is what can happen at the onset of a seizure if you have epilepsy! There's a burst of electrical activity in your brain that causes…..seizures!
Tara: Whoa, Whoa, Whoa! Don't like! Don't like!
Axon: During a seizure, the signals get a bit mixed up and travel around your nervous system giving mixed-up messages!
Abacus: Note: The mixed-up messages might make you fall to the ground and shake all over if the whole brain is affected, or the abnormal muscle jerks or twitches can come from a small part of only one hemisphere.
They might also cause you to stare into space for a while as if you are daydreaming, or to smell a strange scent or to get a strange taste in your mouth.
Brain Cell 1: Lucky robot! I wish I could float. Falling is so old school.
Tara: It stopped!
Axon: Yeah, seizures typically stop on their own after only a few minutes or less. They don't hurt, although you might feel a bit sleepy afterward, but you'll be back to feeling normal pretty quick.
In fact, people don't usually even remember what happens during a seizure.
Not all seizures are the same. Seizures can be generalized or focal. You might have only one type of seizure, or have different types at different times.
Abacus: Incoming fact: Some people find that certain situations can make it more likely that he or she will have a seizure. These are called seizure triggers.
Common triggers are not having enough sleep, feeling stressed, drinking alcohol, taking street drugs or missing meals; rarely they can come from flashing lights.
Seizures are also more likely if you are unwell with another illness. Females, around the time of their periods, may also be more likely to have a seizure.
Axon: To find out for sure that you have epilepsy, your doctor will arrange some tests.
Tara: Oh, yeah, they gave me tons of tests, but I don't know what they were called or really what they did!
Axon: Well, you might have an EEG, which stands for Electroencephalogram. This is when you have lots of small sensors on your head!
Tara: Oh, yeah! I definitely had that one. They had to tell me that they were recording brain waves and not reading my mind.
Axon: The sensors pick up the electrical activity inside your brain and turn it into waves. Your doctor will read the waves and be able to tell what kind of electrical activity is going on inside your brain!
Tara: People can read those squiggles? Well, if you say so. I didn't mind the EEG; it was easy and didn't hurt at all!
Axon: You might also have an MRI scan of your brain. This is when you go inside an MRI scanner to have a picture taken of the inside of your brain.
Tara: Oh that big metal donut thing! Yeah, I did that. It was also super easy and didn't hurt!
Abacus: Note: These tests can help your doctor to find out which kind of epilepsy you have, and which medicines will work best.
Tara: Okay, so what can I do about my epilepsy?
Axon: Great question! There are lots of medicines that can help to prevent you having so many seizures.
These medicines are called Anti-Epileptic Drugs, or AEDs for short, and usually come as a liquid or pill that you swallow.
Brain Cell 1: Doot Doot Doo, everything's back to normal. Doot Doot Doo, I hope it stays this way forever.
Doot Doot Doh. Oh No! Not again! Was it my singiiiiiing?!
Tara: Looks like we may need more daily medicine!
Axon: Yup, thank goodness we have a rescue drug to stop a prolonged seizure!
Tara: Hey, this stuff is awesome!
Axon: Yes, but just like all medicines, AEDs have side effects. The whole idea of AEDs is to prevent seizures…without causing any unintended negative reactions called side effects.
Abacus: Note: Side effects might include feeling sleepy, having a headache, or having a rash. After you have been taking AEDs for a while, any side effects usually disappear completely.
Tara: If it means no more electrical bursts and seizures that sounds good to me!
Brain Cell 1: Me too!
Axon: Now, there are over 20 different types of AEDs so your doctor will help you to choose the best one for you. The choice will depend on your age, the type of seizures you have, the epilepsy syndrome, and the likely side effects that the AED might cause.
Don't worry if the first AED doesn't work for you, your doctor will give you a different one to try.
So just know that it might take a few goes until you find the best AED for you!
Abacus: Note: The AEDs work best if you take them exactly as your doctor tells you to, at the same times every day.
Axon: Now remember, AEDs don't get rid of epilepsy completely, but they can make you have seizures less often.
Some people find that they don't have any seizures at all once they start their AEDs.
Brain Cell 1: Thank you guys so much for your (gets sprayed in face) --ack!
Axon: Well, things seem under control here, let's head back to HQ. Abacus, initiate teleporter.
Abacus: Initiating teleporter now.
Brain Cell 1: Bye!
Brain Cell 2: You guys rock!
Tara: Okay, so other than taking my AED medicine, is there anything else I can do to keep my seizures under control?
Axon: Loads! For example, if you know what your triggers are, try to avoid them as much as possible.
Some people also find that eating heathily, avoiding unnecessary stress, daily exercise and adequate sleep can help to keep their seizures under control.
Now, if the AEDs don’t stop the seizures, there are other options, from special diets to devices, and even removing the area of the brain causing the seizures.
Tara: So, I've still got a couple of big questions. The first being, why did I get epilepsy in the first place?
Axon: Great question, no great answer. There are lots of different types of epilepsy. Sometimes epilepsy is caused by an infection or injury, a problem in the way the brain formed or a genetic syndrome.
Sometimes the doctors don't know exactly what causes epilepsy. But don't worry, doctors are working on figuring that out and making new medicines to help!
What we do know, is that your epilepsy was not caused by something you or anyone else did or didn't do.
Tara: Well, that's good to know! Okay, on to my next big question. Can I still do all the things I love? Sports? Hanging with my friends?
Axon: I won't lie, when you first find out that you have epilepsy you might have to make some changes to your usual activities.
For example, it's important that you don't have a bath or go swimming by yourself just in case you have a seizure while you're in the water.
Tara: That makes sense. It's kind of a bummer, but better safe than sorry.
Axon: Buuuuuuuut, here's the good news! You can still go to school, play with your friends, and do the things you love as long as you're safe!
Now, I'm going to warn you, your parents and teachers might act a bit strange at first. They are just worried about you and want to keep you safe.
The truth is, tons of people with epilepsy live active and independent lives. Soooo yay! Wait, you aren't smiling. I thought that would make you smile. I might have yay'd too soon!
Tara: It's not that you yay'd too soon. It's just that I'm scared. This is all so new. A day ago I literally had never heard of epilepsy and now I have it!
And--and none of my friends do, so I feel alone and sad, and angry and worried. It's--just a lot to take on board.
Axon: Those feelings are all normal because it is a lot! But let me tell you another fact, you are not alone! See all of those lights up there? Each one represents someone with epilepsy; someone going through the same things you are.
Tara: Whoa, there's--there's so many! I really am not alone!
Axon: No, you're not! But if you're ever feeling that way, or if anything is bothering you, you should talk to someone.
Talking to your family, your teachers, or your doctors and nurses can really help.
Tara: Thanks, Abacus. Thanks Axon! I can't say I'm not still a little scared, but I feel soooooo much better now that I understand my new friend epilepsy.
Abacus: This unit is happy to have been of service.
Axon: Yeah, what he said! Okay, Tara, let's get you home!
Narrator: A few weeks later…
Tara: So yeah, It's taken some getting used to. Heck, I'm still getting used to it!
Living with epilepsy isn't easy, but it's also not the end!
Yeah, I've got to make sure I take my medicine just as my doctor prescribed it.
And I've had to change how I do some things, just to be safe in case I have a seizure.
But, as long as I'm responsible, careful, and safe I can still do all the things I love.
My life is still my own…and I plan to live it!
Axon: Really glad you contacted us, Dr. Gill!
Dr. Gill: Me too! Oh, and thanks for keeping my secret!
Rebecca: Thanks for listening! We'll be adding new episodes all the time. We also take requests, so if you have a great topic, let us know! Who knows, we may even interview you! Visit us at JumoHealth.com.
In My Words is produced in New York City and distributed worldwide.
In My Words - A Jumo production.