Many Experience Similar Feelings About Their Seizures

Maurene

A determined career mom with episodes of frequent seizures

Maurene

A determined career mom with episodes of frequent seizures

Many Experience Similar Feelings About Their Seizures

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You’re not alone

Impact of seizures

You’re not alone

Nearly 3.5 million people are living with epilepsy in the US

You’re not alone

Nearly 3.5 million people are living with epilepsy in the US. Many of them share anxious feelings and worry about their seizures.
About 75% live in fear of having a seizure at any time

live in fear of having a seizure at any time.*

Real Experiences
DeJah, an outgoing traveler and full-time employee who found confidence to venture out with VALTOCO
Hear from Dejah
Over 50% worry about having a seizure in public
worry about having a seizure in public.*
Real Experiences
Hear from Amy
About 65% worry about brain damage
worry about brain damage.*
Real Experiences
Hear from Maurene
About 70% worry about losing their independence
worry about losing their independence.*
Real Experiences
Hear from Danielle
About 65% worry about losing their ability to drive
worry about losing their ability to drive.*
Real Experiences
Hear from Colleen
*Results from a survey of 259 people with epilepsy.

Anxious feelings around seizures are driven by real experiences

When seizures are left uncontrolled, the physical and emotional impacts may be felt immediately and continue to develop over time.

Things you may experience immediately

  • Brain fog, confusion, or embarrassment
  • Anxious or depressed feelings
  • Physical harm you can see like burns, bruises, or bleeding
  • Unseen physical harm like broken bones, sprains, concussions, or bleeding in the brain
  • Choking, tongue injuries, or tooth fractures
  • Loss of bladder or bowel control

Things that may develop over time

  • Learning problems or trouble speaking
  • Memory issues
  • An increase in the frequency or severity of seizures, including status epilepticus†
  • † Defined as a seizure with 5 minutes or more of continuous seizure activity or recurrent seizure activity without recovery between seizures.

Other things seizures can take from you*

Ability to work or do other daily activities

Time for work and school

Ability to drive

Relationships with friends and family

Confidence

*Results from a survey of 259 people with epilepsy.

*Results from a survey of 259 people with epilepsy.

Hear from people with epilepsy and their care partners on how seizures have impacted their lives

Hear others talk about the emotional impact of seizures.

Hear others talk about the emotional impact of seizures.

Understand how to treat as many seizures as possible with 2 types of treatment as different parts of a seizure management plan.
Understand how to treat as many seizures as possible with 2 types of treatment as different parts of a seizure management plan
Understand how to treat as many seizures as possible with 2 types of treatment as different parts of a seizure management plan
Discover two treatments
DeJah, an outgoing traveler and full-time employee who found confidence to venture out with VALTOCO

Where DeJah’s seizure story started

I’ve always been one for the spotlight. When I was a little girl, my family and friends would regularly fall victim to playing audience members for the shows I’d put on.”

“Now fast-forward to the tradition of documenting the end of childhood and the beginning of adulthood with high school senior pictures. The next thing I knew, I felt myself bobbing up and down as if I were on a raft in the middle of a lake. I opened my eyes and saw flashing red and white lights refracting through the rain pelting the windows of the ambulance. The paramedic reassured me that my family was following close behind us and that we were on our way to the nearest hospital.

“Before I was discharged from the hospital, a neurologist officially diagnosed me with a seizure disorder.”

What DeJah learned from her diagnosis

“One thing nobody tells you about epilepsy is the paranoia that comes with the diagnosis. I was hesitant to attend events or activities on campus, and as a result, I missed out on new and different opportunities as well as friendships. I had a Seizure Action Plan that I trained those around me to use when I had a seizure, but I still didn’t feel confident in my ability to control my seizures.”

Newfound confidence with VALTOCO

“My neurologist and I never considered an immediate-use seizure medication for me because my seizures have never lasted much longer than three minutes, but I still felt like there was more I could do. I decided I needed to advocate for myself.

“We talked about VALTOCO. We decided it was worth a shot, and we worked together to make it a part of my Seizure Action Plan. In my desk, I have a neon box I keep as an emergency kit for when I have a seizure. Inside, I keep VALTOCO and a list of emergency contacts. Everyone in my office knows where it is and how to use it as part of my Seizure Action Plan.

“It feels great to be able to go out with confidence and know there is something I can do if I feel an aura coming on or experience a seizure.

“For years, I let epilepsy rob me of the spotlight. But since I’ve always had a flair for the dramatic, I’ve taken it back. My hope for the future moving forward is that people never let anything, especially epilepsy, rain on their parade. So, I encourage you—be bold. Take the stage. Your audience awaits you.”

Amy, a caring pharmacy technician and camp counselor who carries VALTOCO to stop her episodes of frequent seizures

Amy’s Story
Danielle_Circle

Danielle’s Story
Amy, a caring pharmacy technician and camp counselor who carries VALTOCO to stop her episodes of frequent seizures*

Amy’s epilepsy diagnosis

I’m a pharmacy technician and volunteer with support groups and various camps for kids from all avenues of life. I always did my best to be there for them, but I never dreamed that one day, I’d be the one that needed help when I was diagnosed with epilepsy and episodes of frequent seizures.” 

“I was working as a social worker and youth specialist at a residential rehab for troubled teenagers. [After experiencing a head injury,] I began having strange feelings I couldn’t explain, kind of like feeling spaced out. These feelings became more intense and frequent over the next couple months. 

“I was taking a group of teens from the children’s home to see a movie. That weird feeling hit me in the theater, so I got up for a drink of water and the next thing I knew I was on the floor having my first grand mal seizure. I was rushed to the ER and given anti-seizure drugs, along with a litany of tests, including an EEG, EKG, and CT scans.

“When the test results came back, they suspected I’d had a grand mal seizure, and I was formally diagnosed with epilepsy. Those strange feelings I’d been having were called auras that, for many patients, precede the actual seizure.”

Making life adjustments

“Adjusting to life with epilepsy was tough. At the time, there weren’t any immediate-use seizure medications for episodes of frequent seizures available to help in an emergency that could be promptly administered by someone nearby.

“Because my seizures were unpredictable, I never returned to work at the children’s home because it would put them at risk. Life went on and I continued having seizures: on the bus, in the grocery store, at restaurants, or just walking down the street. The worst part was that I never knew when or where my seizures would occur, if they would be small or large, or even worse, become a cluster.

“It was hard not to feel that epilepsy was trying to limit my life.”

Discovering new life with VALTOCO

“Around this same time, though, I became aware of VALTOCO. I liked that it was an easy-to-use immediate-use seizure medication. It’s also less awkward or embarrassing because I don’t have to rely on someone else to administer it rectally. I liked that I could carry it around with me in my backpack or coat pocket, and that for most people, one dose usually works.

“So I did my research to learn more and asked my nurse practitioner and neurologist what they thought about it. They agreed it would be a good option for me.


“While most of my seizures are nocturnal, I’m very aware of the things that tend to trigger them, like allergies, stress, lack of sleep, low blood sugar, or just being worn down. My nurse practitioner told me when I have those signs, I can go ahead and self-administer VALTOCO. I love that I have an immediate-use seizure medication I can use quickly, and I don’t have to plan my day around administering it. Because of that, I don’t feel like I’m missing out on life as much as I used to.”

CT = computed tomography; EEG = electroencephalogram; EKG = electrocardiogram.

Danielle_Circle

Danielle’s Story
DeJah, an outgoing traveler and full-time employee who found confidence to venture out with VALTOCO

Dejah’s Story
Danielle, an epilepsy advocate with a love for travel who keeps VALTOCO nearby for peace of mind

Growing up with epilepsy

I am a daughter, sister, and epilepsy advocate. I grew up with my loving parents and younger brother, which created a great childhood. A childhood that would take one heck of a detour the morning of my first day of third grade.”

“My parents knew something was very wrong when, on that morning, they were unable to wake me for school. They quickly gathered me and my brother and rushed to a local children’s hospital. After a ton of tests—MRIs, CT scans, blood work, EEGs, and various other prodding and probing—the neurologist diagnosed me with epilepsy.

“As I got older, the time it would take for me to recover from my seizures gradually got longer and longer, while the frequency lessened. I couldn’t just wake up a few hours after my seizures like I used to and be okay. Instead, it took two or three days to fully recover from each seizure. And that’s how things progressed into my teen years.”

The need for something more

“Through EEGs, MRIs, and about a dozen other tests, they were able to quickly determine that my seizures were coming from my frontal lobe. If uncontrolled, my seizures would affect those functions associated with the frontal lobe, such as reasoning, planning, and long-term memory.

“This scared the life out of me. I was on a daily seizure medication, sure, but I still struggled with seizure control. My mother had diazepam rectal gel to use as an immediate-use seizure medication in case of episodes of frequent seizures, but who wants their mom using that on them? It was not ideal. I yearned to be independent and manage things on my own.”

Updating her Seizure Action Plan with VALTOCO

“I remember when I was about 19 years old, I wanted to take a trip to South Africa by myself. I was tired of epilepsy controlling where I went and who I went with. Having a Seizure Action Plan has allowed me a little peace of mind and freedom to travel solo.

“But there was still one part I had to figure out—my immediate-use seizure medication. So a few years ago, I was talking with my epileptologist, who suggested VALTOCO. The same medication, but no more rectal administration? Yes, please.

“Now I have VALTOCO on hand with me everywhere I go. It gives me peace of mind because it’s less embarrassing to use and it’s easy to train others around me how to use it. I’m really pleased at how quickly VALTOCO works to stop my seizure clusters.*

“There is something empowering about finding an immediate-use seizure medication that works for you, and I think for me, this was a sign that something could be done about epilepsy, that we didn’t have to let it rule over our lives anymore.”

*Individual results may vary.

CT = computed tomography; EEG = electroencephalogram; MRI = magnetic resonance imaging.

DeJah, an outgoing traveler and full-time employee who found confidence to venture out with VALTOCO

Dejah’s Story
Amy, a caring pharmacy technician and camp counselor who carries VALTOCO to stop her episodes of frequent seizures

Amy’s Story

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Maurene, a career mom with episodes of frequent seizures

I thought that I was being fearless by enduring the seizure, or focal seizure, without taking medication. . . . My doctor later told me that I was actually doing damage to myself.”

Maurene

A career mom with epilepsy