13 People Describe What It’s Like to Have Epilepsy

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When a person has had two or more seizures unprovoked by specific events (such as trauma, infection, fever or chemical change), that person is considered to have epilepsy, a condition that affects 65 million people worldwide, according to Citizens United for Research in Epilepsy (CURE). However, because of the complex nature of the brain, a lot of unknowns and therefore misconceptions exist around epilepsy, making it hard for others to understand it.

The Mighty teamed up with CURE Epilepsy to ask people affected by epilepsy how they’ve explained it to others.

This is what they had to say:

1. “It’s like having an earthquake going on inside your head, with the epicenter always in the same spot. The only question is the magnitude and how far it will be felt.” — Cindy Platt Hanlon

Quote from Cindy Platt Hanlon: It's like having an earthquake going on inside your head.

2. “I’ve had difficulty explaining my seizures to people because seizures mean you’re unconscious and therefore unaware of the entire experience. I recently took my partner with me to the doctor to tell what she saw. Together we were able to do a pretty good job.” — Eugenie Margaret Macfarlane

3. “[It’s] like waking up in a place where you did not go to sleep. ” — Christopher Simmons

quote from Christopher Simmons: "It's like waking up in a place where you did not go to sleep."

4. “Epilepsy is like sitting on a time-bomb, just waiting for it to go off at any time.” — Lara Houlihan Ashmore

5. “Fear, constant fear of the unknown. Fear that any time, any moment, you could get hurt or hurt someone else. Your stomach gets in knots, you become very anxious. It’s like someone or something is taking over your body for a few minutes, doing what they want with it, and then you don’t remember what was done. You can only pray you come out alive or not hurt.” — Stefanie Herdman

quote from Stefanie Herdman: Fear, constant fear of the unknown. Fear that anytime, any moment, could get hurt or hurt somewhere else.

6. “My son once described his epilepsy as ‘his brain having a wild party without inviting him.'” — Maureen T. Stemmelen

7. “I used to tell people I’d hear a loud humming noise in my head and that my vision would get ‘fuzzy’ (like a TV channel would get when the cable went out).” — Dennis Carlson

8. “Epilepsy is like an onion — it stinks no matter how much you try to pull away from it, and it is often tear-inducing.” — Alexis Nicole Hymore

quote from Alexis Nicole Hymore: Epilepsy is like an onion, it stinks no matter how much you try to pull away from it, and it is often tear-inducing.

9. “I talked [to my children] about how the brain receives and send messages to other parts of the body all of the time — the brain sends a message to your lungs to breathe, your fingers send a message back to your brain to say they’re cold, etc. When my son has a seizure, his brain’s messages get a little mixed up and cause his brain to stop receiving messages (that’s why he can’t hear us) and sends out wrong messages. I tell them because his brain can’t receive messages, it’s important we take care of his body during a seizure, for example making sure he’s not near something hot that could burn him.” — Vera Chenault

10. “[It’s like] the brain is a computer and epilepsy is the virus. The epilepsy virus causes the brain to reboot, so please stand by when a reboot is in progress. There is no way to remove the virus so it needs to be quarantined (medicated). Please stand by as your doctor (the anti-virus), is working on the removal process.” — dhbepilepsy.com Facebook page

Quote from dhbepilepsy.com : "[It's like] the brain is a computer and epilepsy is the virus.

 

11. “Imagine your brain has a bunch of light switches. Normally, your brain works with your body, and when you want to move your arm, for instance, a switch is flipped. In someone with epilepsy the brain stops talking to the body and switches get flipped without the person wanting them to get flipped.” — Jolene Kristovich

12. “I usually just say it’s like a lightning storm in the brain.” — Onyx Song Jat Sharif

Quote from Onyx Song Jat Sharif: "I usually just say it's like a lightning storm in the brain."

13. “Take files out of a file cabinet and throw them up in the air. Now put all the papers back in the right file folder. That’s what happens when I have a seizure.” — Doreen Langley

Quote from Doreen Langley: "Take files out of a file cabinet and throw them up in the air. Now put all the papers back in the right file folder. That's what happens when I have a seizure."

*Some answers have been edited and shortened. 

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When You Live With the Fear of Uncontrollable Seizures

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“How have the seizures impacted your life?” my neurologist asks me. I stare at him in disbelief. He looked to be a man about in his late 60s, with experience under his belt and years of seeing patients debilitated by seizures. I wasn’t sure how it was even relevant to my medical care. I wasn’t sure why he was asking me to relive my worst hell.

“Are you married?” I ask him. He shakes his head no. “Do you have kids?” Again he shakes his head no.

“Well,” I say. “Imagine losing your whole family in a tragic accident and multiply that feeling by 100. Then drag that feeling for as long as my seizures have been uncontrolled.”

Having uncontrolled seizures goes beyond just the physical effects of having a seizure. In fact, I don’t think that’s the worst part. It’s the worrying when the next seizure will hit. It’s the not knowing. It’s the not being able to do anything about it. It’s the fear.

When you live your life with hundreds of uncontrolled seizures, you live your life with this fear. While you were once a risk taker, you become hesitant. You get used to the phrases, “You can’t do this anymore” and “I’m sorry, I don’t think it’s safe for you to do that.”

Imagine turning 16 and becoming dependent when everyone else is becoming independent. Imagine starting college and then having to leave because you’re falling unconscious too many times and there’s nothing you can do about it. Imagine losing your best friend because of the fear of having a seizure around her. Imagine losing everything you thought you were. That is the reality of having uncontrolled seizures, or at least that’s how it’s been for me. It’s different for everyone.

So how do you live with this fear? You hope. You fake it. You live through the bad days. You survive the seizures and the medical procedures. You believe as hard as you can that things will get better.

When I was first diagnosed with epilepsy back in 2013 at 15 years old, I posted a photo on Facebook with the following caption (I found it somewhere but forgot where):

“Look up for the bright spot…no matter how small.

There’s something good coming, for one and for all.

The dark times do rot…but will fade away,

and the word ‘epilepsy’ will be gone one great day!”

I’m still holding on to that hope.

Melissa in the hospital
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Why Our Daughter’s Epilepsy Isn’t Just About the Seizures

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One night in the fall of 2011 after my daughter, Esmé, was tucked into her crib, I climbed into bed, grabbed my laptop and opened YouTube. I took a deep breath before I started searching terms like “infant tremor,” “infant shaking” and then, finally, in what seemed like a betrayal of my daughter and my own carefully honed optimism, I typed the words “infant seizure.”

That night I watched video after video of babies having seizures. I watched so many that my husband begged me to stop. But I still watched, carefully analyzing each movement and reading the video descriptions and comments hoping to see the words, “We thought it was a seizure but it wasn’t.”

I didn’t find that.

What I found, instead, was justification of my fear that my daughter was having seizures.

During Epilepsy Awareness Month in November, I do my part to raise awareness. I share memes about what to do if you see someone having a seizure (don’t put anything in their mouth), figures about how many among us will be diagnosed with epilepsy in our lives (1 in 26) or will experience a seizure (1 in 10). These are important messages to share, but I often feel that there is something missing — the explanation that epilepsy isn’t just about the seizures.

I tend to feel it the most as the month draws to a close. I want to explain that epilepsy awareness isn’t about a month. It isn’t about wearing purple. It isn’t always even about the seizures. For us, epilepsy is also about the shadows cast by the seizures.

IHillary Savoie.1-001

The first time I knew my daughter had a seizure she was 8 months old. Esmé was asleep next to us. My husband and I both turned to her in time to see the tremors in her tiny plump hands and feet subsiding and a blue-ish tinge just leaving her face. It was so fast — fast enough that I questioned if it actually happened.

But deep down I knew. And that is how I found myself scouring YouTube that night.

Esmé had been unwell since birth. We had spent weeks in the hospital after severe aspiration pneumonia almost took her life. We were not unfamiliar with the world of terrifying medical things that can happen to a baby. We already had a neurologist, who we called the next morning. He assured us that it was very unlikely to be a seizure, but ordered a 30-minute electroencephalogram (EEG) to check her brain function “just to be sure.”

Several days later, the doctor told us that the EEG was normal. He confidently stated that Esmé was not having seizures. This was supposed to be good news, but it didn’t feel that way. Esmé was still having these trembling spells, several of which I’d recorded on my phone. I showed the videos to him and asked him to please tell me what they were. He watched the videos of Esmé trembling, turning blue, her eyes rolling up and to the left and pronounced it to be neurological reflux. He sent us on our way with instructions for Esmé’s gastroenterologist to get her reflux under control.

It wasn’t reflux, but it took almost a year, three hospitals, many new doctors, weeks of inpatient EEGs, five emergency-room visits and two 911 calls to confirm beyond a doubt that our daughter was having seizures.

During this time, the seizures came at least weekly and sometimes daily. The seizures would cluster together in one 24-hour period, knocking days out of each week where we’d do little more than lie in bed waiting for Esmé to experience or recover from seizures. The rest of the time we were terrified to venture far from home. Esmé lost skills: the ability to sit, to focus, and, most painfully, to say “Maman.”

Now, three years later, after trying seven different anticonvulsants — many of which lead to unbearable side effects — Esmé takes a very high dosage of a single medication that works. Her seizures have been dramatically reduced. She is thriving, in her own deliberate, beautiful and delayed way. This is a tremendous gift — one I am thankful for every day. However, it can’t be confused with her epilepsy being absent, with her being “all better.” Esmé’s epilepsy is always with us, even when the seizures aren’t.

Hillary Savoie.3-001

Epilepsy is about the seizures, of course. But epilepsy is also the anxiety I feel while I watch little tremors run through her body or her eyelids flutter in those fleeting neuro-like ways that suggest that her brain is struggling to maintain control. Epilepsy is about our bi-weekly hour drive to the compounding pharmacy that makes the only drug that works. Epilepsy is about giving my child three doses a day of a drug that I am indebted to, but that I also despise for the effects it has on my daughter. I have nightmares about being unable to attain this drug, but I worry daily that I don’t know where the drugs end and Esmé begins.

Epilepsy is wondering what damage has been done to my daughter’s brain, and what we could have spared her had we just gone to a doctor who listened to us sooner. Epilepsy is wondering if and when, as has happened with so many of my friends’ children, the drug will fail her.

Epilepsy is wondering when the seizures will come back, and what they will steal away from her this time.

These are the things I want people to understand from our story: Epilepsy is elusive and confusing. It isn’t always simple to diagnose or to treat. It isn’t easy to live with, even for individuals who, like Esmé, are currently “stable” but not “better.”

And, most of all, I want others to know there was a time that I didn’t think epilepsy awareness was important to me, personally. And then my daughter was diagnosed, another 1 out of 26. Trust me, when that “1” is someone you love, epilepsy awareness is every month. Every day.

Follow this journey on The Cute Syndrome.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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What I Wish I’d Said During My Child’s IEP Meeting

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To my child’s IEP team:

First of all, let me start off by saying how thankful we are that you have devoted your life to working with children with special needs. It makes it easier on parents to know you look out for our children while they are at school. We know you have taken on a big responsibility as we know the demands our children place on us.

Forgive us if we get frustrated during the meeting and don’t agree with what was being said. Please understand we have put way too much time and energy into exhausting every last option of getting him the help he needs. Last I checked, he was our child, and we will not stop advocating for him. I’m sorry if that comes off as ungrateful for all you do. Please do not misinterpret this. We just wish you could step back and walk a day in our shoes.

These are the things I wish I would have said in the individualized education program (IEP) meeting.

Our son was born preterm and spent three days in the NICU due to breathing problems. He fought the odds. My son is a fighter. He was not a happy infant and toddler. He demanded a lot of attention right from the beginning. At about 6 months of age, I knew there was something wrong with my child.

The problem was nobody would listen to us. It took another six months for a doctor even to take our concerns seriously. It then took another two years before we got a proper diagnosis. We have had to fight for where we are. Constantly battling with professionals is exhausting. We have been misdiagnosed so many times. Try to imagine walking through life with every medical professional telling you they don’t know what is going on and that he is a puzzle. This leaves you feeling helpless as you struggle to watch your child suffer.

Before medication, he was having close to a 100 absence seizures a day. This, too, was misdiagnosed as facial tics. He wasn’t medicated for another year because we were led to believe they were tics and there was nothing that could be done about it. All of this was on top of a global developmental delay. So forgive us if we disagree with what is being said. We have been let down so many times on our journey that it has become hard to trust.

We deal with sleepless nights, meltdowns that last for more than 20 minutes and endless medical appointments. We are living with guilt because we feel like we’re not always able to give our other children the attention we would like. We are exhausted. This is our life. We have hit rock bottom numerous time but continue to fight.

It took us five years to find the right medical team and finally get some answers. Medication helps, but he deals with so much every day. The seizures are not the only thing. He has a mild intellectual disability and requires occupational therapy for sensory issues, speech therapy for a delay and a psychologist for his impulse control problem. These past weeks we were told he has a genetic mutation. So we are in the process of trying to learn what all of this means. Please bear with us.

You say he is too reliant on adults for help and should be more independent. He should just be able to follow directions and pay attention. Now, if you can honestly tell me that you could handle everything he deals with on a daily basis without needing adult support to help you navigate through your day, then more power to you. He needs validation and support. Why is that so bad?

We have seen our son overcome so many milestones this year to promote being independent.

He has learned to get dressed without putting clothes on backwards.

He has learned to button and zip with a lot of help from occupational therapy.

He has learned to make some snacks by himself.

He has been able to play outside by himself while we work around the yard.

He is beginning to understand how to “play.”

He has been able to learn how to hold his pencil properly and trace his name.

He has started helping out with some jobs around the house.

The biggest accomplishment he made was being able to pedal a bike with training wheels.

Here’s the thing: This might not be the type of independence you are talking about, but last I checked, the IEP is supposed to be individualized for him. I know education is important, but we need to be realistic. He is not ready for the kindergarten curriculum yet. He needs to get his self-help skills down so one day he can hopefully become self-sufficient. The reality is he may never be able to live on his own. We have come to terms with that.

Please do not act like you know our child better than we do, and please be understanding when we say we want to set him up for success. He has enough battles in his life. School shouldn’t be one of them.

Thanks for hearing us out.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Santa Poses for Sweet Pic With Exhausted Boy Who Just Had Seizure

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A mom captured this seriously sweet photo of her son with an accommodating Santa.

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Courtesy of Samantha Wade

Samantha Wade took her 2-year-old son Ryland to see Santa at a mall in Ohio, but then he had a seizure right before he got to see St. Nick. Ryland has epilepsy and can have anywhere from one to six or more seizures a day depending on many factors including the atmosphere and the amount of sleep he got.

Despite being completely exhausted from his seizure, Ryland’s mother was still determined that he would have the chance to see Santa. Undeterred by the fact that he couldn’t even open his eyes once he was in his lap, the sweet santa decided to play along and feign sleep, allowing Wade a precious holiday picture.

Wade posted the photo to The Mighty’s Facebook page on Monday. With it, she wrote:

I just wanted to share this photo. We took my son Ryland to see Santa Claus today at the mall. It was an event for kids with special needs, and it took place before the mall opened. It was very quiet and relaxing, the perfect environment for a child who needs more of a calming experience with Santa.

Ryland had a seizure before we went, and this one took a toll on his energy, but nothing would stop him from meeting Santa! When I set Ryland on his lap, he wouldn’t open his eyes for anything… but Santa immediately cuddled with him and very quietly talked to him for awhile. When it came time for a photo, he pretended like he was snoozing along with Ryland, making for one awesome picture and a very memorable moment for us!

Sometimes you just gotta go with the flow, and I’m so glad Santa Claus did.

“When people see the photo, I want them to realize that just because he has daily seizures, and some really deplete his energy, we do our best to go about our day anyways,” Wade told The Mighty in a Facebook message. “Whether it be running errands, visiting family, or sitting on Santa’s lap, he deserves every opportunity that’s presented to him and we’ll do everything we can to make that happen. We refuse to keep him cooped up in the house, regardless of seizures, and if he happens to sleep through what we’re doing, that’s just life with Ryland, and we’ve learned to go with the flow.”

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When One Second Changes Your Life as a Parent

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On November 3, 2013 we woke up like every other day, filled with tickles and giggles. I didn’t know that by 5 p.m. we would be on our way in an ambulance to see a neurosurgeon at a top children’s hospital.

It only took a second to change our lives.

My son, Nathanial, fell backwards down the stairs at his dad’s house; it only took a second of him looking away. It took time for Nathanial to show any symptoms, and several hours passed before I knew something was horribly wrong.

But they said we were lucky. Nathanial didn’t require surgery. The bleed had stopped. Only time could fix it. He would be fine after a 24-hour observation. Go home, relax, don’t worry.

Nathanial was having problems walking and was having staring spells. He was diagnosed with post-concussive syndrome, but again were told not to worry. It would improve with time.

Fast forward a year and a half and our lives were turned upside down. After an MRI and EEG, Nathanial was diagnosed with epilepsy. He was also diagnosed with developmental delays, hypotonia and autism-like symptoms. We prayed and started him on medication.

But a second can change everything.

His first major tonic clonic seizure came only weeks after his diagnosis. Then several more. He changed medications. And we waited. His seizures continued to get more severe. He started having more types of seizures, and every day they got worse.

By July 2015, Nathanial was having more than 30 seizures a day, including seven different types. Even  and on multiple medications, there is still little seizure control.

Tick tock, a second can change everything.

Another EEG in August confirmed our fears. The dreaded slow spike waveform. My sweet little boy went from being one in 26 (in the U.S.) with epilepsy, to an estimated one in 50 to one in 100,000 with suspected Lennox-Gastaut syndrome.

All of the pieces started to fit — the intractable epilepsy, the behavior problems, the autism-like symptoms, the developments delays and hypotonia. It all made sense.

Through all of this, Nathanial has been strong. My little warrior. If he falls down seven times, he gets up eight. Every second brings another set of fears and sadness, joy and laughter, always the extremes.

The day I found out Nathanial would require a wheelchair at least part time.

The day Nathanial was fitted with a helmet.

The day I was told we would likely never gain control over his seizures.

The day Nathanial was fitted with orthotics to help him walk. The same boy who was running at 9 1/2 months old.

The day we found out cold causes seizures for Nathanial. He can no longer be outside when it’s below 50 degrees.

The first time I had to use emergency medications to stop his seizures.

The first on many ambulance rides.

The day I signed his IEP for school and enrolled him into a special needs classroom.

The day I was told he isn’t making any progress in therapies.

The joyful and happy times always shine through the sadness.

The day he qualified for Make a Wish and we started planning his trip.

The day Nathanial ran the last 50 feet of a 5K without falling.

The day he made it through the school day of two and half hours without a seizure.

The day Nathanial decided his helmet and orthotics make him “Super Nathanial.”

The day our community reached out to help Nathanial.

The day complete strangers reached out to sponsor Nathanial for Christmas.

The day someone we didn’t even know dressed up as Santa and visited in the hospital, because Nathanial was afraid he wouldn’t be able to find him.

The continuous days of support and love from our community as we go through this journey together.

Nathanial has been quite sick recently, yet another piece of the puzzle we haven’t found yet.

Another second that can change everything.

The virus and croup that turned into rhabdomyolysis, causing Nathanial extreme pain and caused him to be weak and unable to walk.

The fight to regain “normalcy” and get him back to health and back to living his life.

A month later and we were back in the hospital with a severe bacterial infection, with no known cause other than he was on antibiotics for an ear infection. Yet another mystery.

But Nathanial continues to be courageous and strong! He won’t let anything bring him down. Not the TBI (traumatic brain injury), not the epilepsy, not the random serious illnesses. He is a fighter!

For every second that is horrible and scary, Nathanial’s smiles brighten the days and make those seconds feel so far away.

It literally takes a second in time to change your entire life. But just as that second can change your life with something horrible, that same second can become something great.

In a second, I regained my faith.

In a second, I knew the greatest love and will to fight that many may never feel.

In a second, I knew how precious life truly is.

In a second, I learned how lucky I am to have Nathanial as a son.

In a second, Nathanial can capture you’re heart and never let go.

Never let a second go by in life without truly living, no matter fear or sadness or trials you are going through. Just look at the love and joy in your life, and remember how much those seconds matter. Hold them close to your heart when those seconds get long and hard to get through.

Remember a second can change your life.

Follow this journey on Nathanial’s Story.

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