Angelica Pownall

November 25, 2022

So, I had my first seizure when I was 16 years old. I was at my friend’s house and her mum was giving me some tutoring for my GCSEs after school around 5pm. Apparently, we were talking and suddenly my face dropped, and I fell to the floor and had a seizure.

Seizures began to be a regular thing after that one, but not on a weekly basis or daily basis. My Epilepsy is definitely dependent on my body’s limitations but of course, I was completely unaware of this or what the boundaries were. So, I found myself in many dangerous situations and the seizures were happening more and more because I was not on medication yet.

Being a teenager, I was going to festivals, drinking, and staying up late, going to the front of the music tents….and in these situations I found myself ending up in hospital getting stitches, black eyes, and broken noses. Saying that, even after 7 years of having Epilepsy, 3 years ago, I had my first injury where I knocked my two front teeth out. I think that’s when I finally was able to say to myself, I am a victim of Epilepsy. it is not on me that I have had these injuries and that’s not saying that I’m also not strong and an Epilepsy warrior, in fact it’s the opposite. I just think it is something you can’t quite explain to those who haven’t had a seizure, but for quite a few years I felt a sense of guilt connected to my Epilepsy. Now, for me, it is so important that I see my Epilepsy as a disability because it is. I understand some people don’t like to use that word but in my opinion the word is not negative, the stigma attached to it is.

I have definitely found having Epilepsy a difficult adjustment in my past. But I have had epilepsy for 10 years now and had a lot of therapy, so I am at a peaceful place with my reality and accepting it as my normal. However, taking it back to my late teens, I went through a very dark time of depression and isolating myself away from my friends. Being a very sociable and active person, the limits this new disability put on me felt frustrating, felt unseen, felt unfair and I generally didn’t feel I could relate to one person in my life. Fast forward to today, I have gone to festivals, I do go to parties, but I do it my way and sometimes, I also have a seizure, even though I don’t drink or do anything but dance. These moments are sad and frustrating still but don’t happen as often and of course I don’t go out constantly as I work etc. I think over time it’s just about understanding my body more, if I go out with my mates and I feel a bit iffy, 9/10 I’ll take myself home.

I think the most frustrating part of this journey, referring to my relationships with my Epilepsy, is that it has taken me 10 years to get to this peace. But sooo many people wanted or thought I should be there sooner, and I think that’s what can be hard, of course I say I’m at peace, but it’s still hard at times now. Getting to know new romantic relationships can be really vulnerable at times, if your Epilepsy wants to show itself, it just will.

My last seizure was two months ago, it was the morning after going on a night out with mates… first time in a long time, and like I said, it’s just completely based on a lack of sleep and interrupted sleep in that situation. I tend to now have a seizure every three to four months.

For any questions, advice, support, and/or ideas, you can follow and contact Angelica on Instagram @Angelica_Pownall.

Maddie

November 15, 2021

“As a kid, I would have these episodes of an unusual, unexplainable sensation. Whenever I was in an environment with flashing lights (the car, any kind of wedding/party, movie theaters, etc.), my arms and legs would jerk and I would have that weird feeling, but I never lost consciousness. I didn't understand it, so I pretended it was normal and didn't concern my parents with it.

My first "documented" seizure happened while I was at a slumber party, where we had stayed up until probably 4:00 in the morning. My arms and legs kept jerking while I slept that morning. I didn’t understand why, but I ignored it. I woke up, and instantly felt “off”- lights were distorted, I couldn’t comprehend what people were saying to me, I felt like I was living in a dream. Again, I didn’t understand it, but I ignored it. Fast forward about 30 minutes, I collapsed in front of all my friends.

I was then diagnosed with Juvenile Myoclonic Epilepsy in 2011, when I was 12!

I honestly don't remember a ton; it comes in flashes. Being in the ambulance (I kept trying to take the oxygen mask off lol), being hooked up to wires in the ER room, going through the CT scan machine. When I fully regained consciousness, my mom told me I had a seizure. I just remember being extremely exhausted and emotional for the next day.”

Erik Hunker: Do you feel epilepsy has changed your life? “1,000% yes. As a kid, I believed I was invincible. There was no mountain I couldn’t climb; no number of broken bones could ever take away my sense of adventure. After my diagnosis, I became extremely depressed. I was handed a list of "no's" and I had finally found mountains I couldn't climb. That adventurous and brave kid suddenly became very timid and cautious. It took me years to accept my situation. I once had a therapist tell me once that being diagnosed with a chronic disorder is so similar to experiencing a loss. You must take the time to grieve it and eventually accept it. I definitely went through those stages of grief over the years, but I'm now in a place of acceptance and comfort. I may not be who I thought I would be or where I thought I would be, but I'm okay with that!”

Erik Hunker: To people that are new to epilepsy, what are some things that you would like them to know about it? Being someone that has dealt with it, what do you want new people to know? “I'd want people to know that you don't have to hide. I spent a couple of years hiding my diagnosis from people. It was something that made me feel like the weird kid and I felt ashamed and embarrassed, so I never talked about it with friends or even family. Once I finally found the courage to share my story, I realized that people were on my side and wanted to hear what I had to say. It may take time, but you'll find that courage.”

“My journey with epilepsy would not have been the same without my support system. My parents, my siblings, my best friend, my boyfriend - they've all either seen me have a seizure or been there for the recovery of one. Aside from having seizures, anxiety and depression have played a huge role in my journey and I wouldn't be here today without a solid support system. In terms of who I consider a hero, it's every single person battling epilepsy. The battle is so different for all of us, but each of us are absolute warriors.”

“My last seizure was on 11/15/2020."

For any questions, advice, support, and/or ideas, you can follow and contact Maddie on Instagram @madds_23.

_______________________________________________________

 Today, November 15, 2021, marks 1 year seizure free for Maddie.

Congratulations Maddie!!!

Sammy Irwin

October 9, 2021

“I’ve had epilepsy my entire life and I grew up with convulsions etc. and then my first big tonic clonic seizure happened at my friends house when I was 12 years old….. 2005. I was at my friends house, I was extremely confused and I was very sick. Epilepsy definitely effected my life for sure. It effected my ability to drive when the time came, certain jobs I thought about doing, and certain goals I felt weren’t attainable but I always pushed and found a way to make it work.

I am very thankful for the help from my mom and dad and my neurologists, Dr. Javidan and Dr. Agha Khani, it took forever to find the right neurologist. BC Children’s Hospital and Vancouver General Hospital are the hospitals where my doctors are locatedthat saved me.

I wasn’t eligible to have brain surgery because I have generalized seizures where they effect both hemispheres of my brain. My last seizure was in February 2020.

I worked at an Epilepsy Foundation for a few years, it was for the center for epilepsy in Abbotsford BC. Also I was in the paper for raising epilepsy awareness. Later, I was then interviewed for an Epilepsy magazine, E-Action.”

For any questions, advice, support, and/or ideas, you can follow and contact Sammy on Instagram @sammy.irwin11.

Leonie

September 6, 2021

"When I was nine years old, I often had that “weird feeling.“ I got nausea and deja-vu. I told my parents and the pediatrician about it, but I guess they all thought “she is a child with a luxuriant imagination.“ Today, I know that they are really auras (simple-focal seizures). Shortly before my first Grand Mal Seizure, December 2013, I had my first EEG because I often had headaches. They saw some epileptic activity. I had a few hospital visits and the pediatric neurologists were awful. In 2015, when I was sixteen, I was allowed to go to a normal neurologist. She then diagnosed me with Epilepsy. At that time, I was at school and I wanted to become a police officer. Because of epilepsy, I had to give it up. I graduated in 2017 and started studying Green Building. Now, I‘m an engineer and starting my master study soon.

Today, I‘m three years Grand Mal Seizure free, but I still have a few auras per month. My last seizure was a Aura Seizure on the 29th of August. I love to make music (guitar, piano and singing) and play soccer. That makes me very happy and it clears my mind. I‘m also working on projects regarding to help with epilepsy and being a volunteer at the German Red Cross. With my side effects, I’m not allowed to drive and it makes me mad, but I have to live with it and I‘m living a nearly normal life.

I‘m really happy to share my story and have this wonderful and understanding community on Instagram. I love to get in touch with other Epilepsy Warriors. "

For any questions, advice, support, and/or ideas, you can follow and contact Leonie on Instagram @leonies_epilepsy_diary.

Jenna Johnson

August 2, 2021

“I was 20 years old when I had my first known seizure. It was October of 2014 and I was a junior in college. I was at an outdoor weekly worship event that my college put on. I didn’t know what had happened and thought I had simply passed out, which I had never done before, but it had been a particularly busy/stressful week of classes and I was low on sleep. I was having trouble walking after so my roommates got me home and in bed. I felt headachy and fatigued for the next few days, but nothing came of it. My next seizure did not occur until 3 months later. 

I have complex partial seizures with secondary generalization. Sometimes I just have the aura, but mostly it goes into a generalized seizure. I have also gone into status epilepticcus before and now have rescue meds on me. I try and avoid going to the hospital as much as possible.

Epilepsy has shown me who my true friends are and who aren’t, so I guess that’s a positive. I also now have the most wonderful seizure alert/response dog, Hamilton. He is, by far, the best thing to come out of epilepsy. I think one of the hardest parts for me has been losing my ability to drive. I feel like I have lost my independence. I also had to move back home with my parents. That was never the plan.

Due to the frequency and severity of my seizures I had to take a medical leave from work. I am a credentialed elementary school teacher. I’ve taught K & 2. I originally took medical leave to get the VNS surgery and planned on returning to work after my recovery. That was nearly 3 years ago though and my seizures are still not controlled. I have been doing some private tutoring, which is more manageable and less stressful. I have still had seizures on the job, but the families were great. It’s not my dream job though. I miss the classroom. I’ve been thinking about maybe going into some sort of work with service dogs. Possibly training them or helping people get them. That would be a passion of mine. I also want to write a children’s book. Maybe about epilepsy. Maybe not. Time will tell.

To clear my mind for fun, I read or really listen to audiobooks. I get dizzy super easily from my meds so sometimes reading words on a page is tough. I also play with my dog and take him on walks or doggie play dates. Service dogs get to play too.

My last seizure was July 21, 2021. I have a neurologist appointment coming up and I want to talk about switching meds. I just sometimes have a hard time advocating for myself with doctors. I hope he doesn’t suggest another Video EEG. I’ve done 3 of them and I HATE it. No answers provided yet. Though they are pretty sure I have temporal lobe epilepsy.

My friends are really what helps me get through this.; the ones that stuck around. They are so wonderful and caring. Lifelong friends. And, of course, Hammie, my dog.

I was also diagnosed with mild cerebral palsy (CP) at the age of 2. Doctors believe I had a stroke shortly after birth. There were several complications, plus I’m a twin. However, they don’t believe the seizures are related to the CP. Especially since they started later in life. So it’s a mystery why I have seizures.

I’m hoping to find a new medication that has less side effects. I want to be able to play soccer again and go on hikes and be more adventurous. I tend to have seizures when I overdo it, and the side effects from the meds leave me feeling sick and fatigued which is also why I can’t work. I’m hoping things will change though. Also, Hammie coming into my life was totally orchestrated by God, at least that’s what I believe. He is my little guardian angel and I thank God for him everyday.”

For any questions, or advice, support and/or ideas, you can follow and contact Jenna on instagram @seizuresentiments.

Chandler Jahnke

July 23, 2021

When Chandler was just 8 years old, she had her first ever seizure; grand mal. She had just arrived home from sledding with her mother. She remembers telling her mother that she felt very off. She then began walking to her family room and she collapsed two times, but her family was unclear what had even happened, what it all was from, what the cause was, what it was. It all made Chandler feel scared especially hearing her mother talk to her, but not being able to respond because she could barely breath; it all made her feel trapped. 

Being diagnosed with Epilepsy, does not affect Chandler’s social life at all. She is a very open, fun, and social person. She has a bunch of friends and good relationships. Chandler does a lot of extracurriculars. She loves theatre, music, being with friends, and even advocating and volunteering; she just loves making a difference anywhere she can. In 2015 and 2019, Chandler attended Teen Speak Up for the Epilepsy Foundation of America Right now, she is currently a Policy Champion, along with being an Epilepsy Foundation of America Ambassador. 

The weekend of July 17 and 18 2021, was Chandler’s last seizure, but they were small; petite mal/absence and they are in her sleep some times. She has not had a grand mal seizure in a very long time. 

For any questions, or advice, support and/or ideas, you can follow and contact Chandler on Instagram @c.h.a.n.0_0 and @epilepsy_isnt_me.

Ashley Calvento

July 19, 2021

“Between 2017 and 2019 I was actually having focal seizures not knowing they were seizures. I get intense deja vu, tastes, smells, fear, and I get really hot for about 20-30 seconds. They only happened 4-5 times a year so I didn’t think about them much. In 2019, I started having them more frequently. In August 2019, I had a focal seizure at work and passed out; that was my first time passing out from it. I went to the hospital and later had a grand mal seizure there that night and was diagnosed with epilepsy.

My last grand mal seizure was November 7th, 2019! I still have focal seizures/auras, but the grand mals have stopped by my medication. (Keppra & Vimpat). I have had grand mal seizures, partial focal seizures, and complex focal seizures. I love to workout, go on hikes, and go to the beach! I went to West Hills Hospital in West hills, California. The nurses and staff were great and helped me out a lot!

I would like to thank my parents, grandma, and my boyfriend for always being there for me throughout my epilepsy journey. They have seen me at my worst and along with my best friend Lauren who is always there to talk to me about anything and actually listen and care. I would also, lastly, like to say that being diagnosed with epilepsy as an adult can feel like your independence is being taken away from you, but never give up. I never thought I’d get my drivers license back and be a personal trainer. I had to stop training a lot of my outside clients and just stay at my corporate job while taking Uber/Lyft everyday for a year. I finally got my license back in November 2020 a year after my last grand mal seizure. I almost lost hope, but many stories of other epilepsy warriors gave me a lot of hope. ☺️”

For any questions, or advice, support and/or ideas, you can follow and contact Ashley on Instagram @ashleys_advocacy_.

Caroline Schneider

July 12, 2021

Caroline was diagnosed with epilepsy on October 1st, 2010. Carolines seizures were controlled, but when she had them, they were grand mal seizures and complex partial seizures. Caroline went to Johns Hopkins when she was first diagnosed with epilepsy and she is following her diets program from there. But when she had brain surgery, she was at National Institute’s of Health (NIH) and she saw most of her neurologist at Sinai. November 29, 2019 was her last seizure, and she had two seizures on that day. Caroline is a very artsy person. She loves drawing, painting, and making other arts and crafts. You can see Caroline’s art work on Instagram @simply_schneider. To control her mental health, she works out, and loves to watch Netflix and HULU. Caroline wants to spread epilepsy awareness as much as possible.

For any questions, or advice, support and/or ideas, you can follow and contact Caroline on Instagram @schneider_cm.

Nakoma Shiota

June 28, 2021

Hi my name is Nakoma Shiota, I was diagnosed with epilepsy when I was 5 years old. I have focal seizures and grand mal seizures. Now I don’t let anything hold me back in life. So no matter what, I try to always make it to the beach to relax and go out surfing or paddle boarding when I can. I live with my service dog, @shadow_the_service_dog16, she helps me everyday by alerting me to seizure activity and assisting me with getting help if I need it. Having epilepsy has been a life journey, but it has also taught me so much about myself and how to keep going even when things seem impossible.

For any questions, advice, support and/or ideas, you can follow and contact Nakoma on Instagram @nakoma_asuka.