WARRIOR STORIES

Want to be a featured Warrior?

Send us your story to LifeElektrik@gmail.com.

Be featured and help spread awareness!

By sending Life Elektrik your story, you are agreeing to the following:  

“I am participating voluntarily in sharing my epilepsy story (including all medical information I have written within my story) and my photo.  I grant irrevocable full permission to Life Elektrik to use my likeness in all media, including photos, video, film, website, social media or their event records where I appear.


 

 

February 26 2016 will be a day etched in my brain forever. We had just collected Henry from his childminder. It was quite rare for his mum and I to both be able to collect him together and then collect his sister from school; we both finished work at a similar time on this particular day so thought it would be nice to do it together. We arrived at Henry’s childminder’s house and he had just woken up from a deep sleep. As I lifted him up, his knee “jerked”. Quite strange, I thought. But I put it down to him still waking up fully. He was just 11 months old so couldn’t communicate how he was feeling. I strapped him into his car seat and we made the 5-minute journey to his sister’s school. I parked up and something just told me to look in my rear view mirror. To this day, I don’t know what that ‘sign’ was. I just did.

His car seat was rear facing so I couldn’t see his face, however, his leg was dangling over the edge and shaking. His mum and I quickly got out of the car and she unstrapped him. I was violently, stiffly, shaking in her arms. What the hell is happening to our boy? We ran with him into the school reception. I immediately called for an ambulance. In the reception area was an off-duty midwife who announced to us he was having a seizure of some sort. The paramedics were there within minutes and started to work on him. “Does he suffer from seizures? Does he have epilepsy? Has he had this before?” So many questions. No, no, no. Mum and Henry were whisked to hospital in the ambulance. I followed in the car. Weirdly, I was concerned about getting a ticket so wanted to drive up. Deep down, I couldn’t watch my son go through whatever it was he was going through. I have zero recollection of driving to the hospital. No idea. All I remember was breaking every speed limit; I arrived before the ambulance. (Do not break speed limits, kids. It’s foolish and dangerous). I parked right outside the emergency department. This time I didn’t care where I was parked. Shortly after, Henry arrived and he was taken straight into the resuscitation room. He was still fitting. Doctors and nurses surrounded our boy. His mum and I directed to a parent’s waiting room; a small room with a coffee table in the middle. We had a lovely nurse come in with updates and offers of tea. (It’s a British thing. Tea makes everything better.)

Finally, he stopped. We were allowed to see him. We spent 5 days in hospital from that moment and he was diagnosed with a Febrile Convulsion - fairly common in children Henry’s age; when there’s a temperature spike, your body goes into shock.

One month later, Henry celebrated his 1st birthday. All was fine. The horror of 30 days before being put behind us. But, in my mind, something still didn’t feel right. I felt I would often see him jerk. But then he would smile and just go about his day. I must have been imagining it.

Fast forward a few months... we are sitting on the couch and then Henry suddenly slides down before going into another seizure. NOT AGAIN. Yes. Again. This time, no temperature. This is not a Febrile Convulsion. Paramedics called, whisked to hospital, into resuscitation. Another prolonged seizure. We needed answers. Another hospital stay.

We were booked in for an EEG. From that, it was confirmed he had Epilepsy. Our lives just changed forever.

Fast forward 2 & a half years; Henry has had multiple hospital admissions, including stints in ICU, more tests that I care to remember, prescribed and tried on almost every AED and become best friends with all the staff at the local hospital. (Seriously, they’re incredible.)

We’ve recently had a genetic report back, which suggests that Henry has Dravet Syndrome in one of his genes but in another part, there isn’t a documented case anywhere in the world so he really is the rarest of the rare.

With Dravet comes a high risk of SUDEP (Sudden Unexpected Death in Epilepsy). We all know how petrifying that sounds. That’s why I’ve dedicated the last 2 and a half years into knowing as much about epilepsy as I possibly can. I’ve made friends within the community - friends that really have gotten me through the rough and tough times - advocated for others, shared my story and now run the only Life Elektrik meet up group in the U.K.

Henry is such a special little boy who spends most of the day laughing and smiling. He’s loved by all and has touched people literally around the world. But this battle will forever be ongoing. I want to do more to help others. I want to play a part so one-day, a parent doesn’t have to feel as scared as I do every single day. I want to raise awareness. I want to raise money for research. Anything.

If you want to get in touch with me and find out more about Henry’s journey, I’m always available for a chat. If you want some advice or just someone to talk to - parent to parent, man to man, sufferer to parent of a sufferer, I urge you to message me. I know what it’s like. And it’s good to talk.

To everyone affected by this condition, you’ve got this. We’re all in this together. Let’s not just play the game anymore; let’s change the way the game is played.

Nath 💜

You can follow Nathan's journey on Instagram at:  @naththedad

Nathan is currently raising money for the Epilepsy Society & Epilepsy Research UK to give back to the organizations that have helped him & Henry so much.  Upon meeting his goal, Nathan will be SKYDIVING!  Please consider donating at: Jump for Epilepsy to support Nathan's fundraising efforts. 💜


 

 

My name is Rebekah Farmer.

I have had medical issues for over 13 years. Within the past 2 years, things have became debilitating. After being misdiagnosed and on Adderall, benzos, sleep meds, pain meds, antibiotics for most of my life, I realized these were only exacerbating the root causes.

I dove in with Integrative doctors, and uncovered many issues that explained so much. Autoimmune disorders, chronic Lyme, fibromyalgia, Central Sensitization Syndrome - a disorder of the nervous system, seizures, raynauds, Chronic fatigue to the point that I could not get out of bed. It was absolutely crippling. The antibodies and other alarming labs were all very new and shed so much light on these years of struggle and misdiagnoses.

Being misunderstood is one of the most painful things that anyone can go through, especially when they do not understand themselves. Getting the help I needed was a big step in becoming my own advocate and a step towards true self care. I also got back into yoga - which I now practice daily. Journalling, my support system (close friends, church), various supplements, daily walks and sunshine, breathing exercises, prayer, a modified ketogenic diet, a positive mindset, strong Faith, and a heart that loves and also is still learning to receive love - and grace ... these are all healing things. I am far from perfect and still struggle a lot. But, now I'm not stuck in bed with crippling pain and fatigue, I have reversed Hashimotos hypothyroid, grown 2 inches, reversed IBS and IBD, sever acid reflux. I ENJOY food now because it does not cause me pain. My toes used to swell like golf balls, and they no longer do.

 

 

I was having seizures 2 to 3 times per week - When these started, I was going through an especially extra stressful time. I would find myself doing something and not remember what had happened for the last 5 to 10 minutes, or I would pass out while doing light yoga in the morning - thankfully waking up face down on my bed completely unconscious. I'm so grateful to God that it did not happen while driving or on stairs. When these happen, I know that I have to check in with my habits. I NEED extra self care, I need support... I need to do breathing exercises, move my body, give my body the nourishment and fuel that it runs best on, be responsible with sleep, and accept myself the way that I am. It is hard to accept myself sometimes, when I compare myself. But, finding my identity in Christ has helped a lot. I have learned that I am not of less value or worth than anyone, and that I can actually help SO MANY others who are fighting systemic disease and are out of answers (especially with traditional medicine doctors). My passion is to help guide others who have also been to that point of hopelessness, and help them learn skills and tools that will improve their lives and the quality of them - so that they too remember joy and that they are warriors. I long to help them flex their warrior muscles. I am still on a long journey, and I wouldn't take any of it back.

We can do all things through Christ who strengthens us. Heed to the Spirit, and he will guide and protect you. Lift up your head.
"Where the mind goes, the man follows." And oh, we have so much opportunity to Unlearn, Rethink, and Rewire our thoughts.

Never give up. Smile for every chance. And Consider it pure joy <3

You can follow Rebekah's journey on Instagram at:  @tailoredketohealthjourney

 


 

When Annebelle was born, she was rushed to the hospital and diagnosed with Incontinentia Pigmenti, epilepsy and other developmental disabilities. We were quickly thrown into life as a special needs family. Annie started therapy at 6 weeks old and was set up with seven different specialists.

 

 

Annebelle’s epilepsy journey has been a roller coaster. She was diagnosed with focal epilepsy in the NICU and the seizures were quickly under control with medication. When she was a baby we noticed that she was having “jackknife” movements. They started off subtle and quickly, but became more dramatic and clustered. She was having 50 spasms a day.

Eventually, Annebelle was diagnosed with Infantile Spasms and was quickly put on another anti-epileptic medication. Annebelle tried and failed five medications along with the Ketogenic Diet. After a year of uncontrolled spasms we finally found a medication that worked and her spasms stopped. After a blissful two months of seizure freedom, I noticed that her focal seizures returned. She was placed on a new medication that failed, and then tried two more. We had a conversation with her neurologist and discussed her options after failing all medication options.

After a lot of thought, we decided to opt for an epilepsy surgery. Annebelle will have a Vagal Nerve stimulator implanted and we are hopeful it will help. Along with Epilepsy, Annebelle was also diagnosed with Triplegic Cerebral Palsy. Her legs and right arm have muscle weakness and spasticity making it difficult to develop her fine and gross motor skills. She’s currently going to physical, occupational and speech therapy once a week to help her develop these skills. She is also on a mission to learn to walk.

 

 

Life with disabilities has proven to be a challenge in many ways, but at the same time it's simple- it's our life. We live life like everyone else. I spend my days taking care of the house and looking after two crazy kids with a few differences from the typical family. Every morning we wake up and make breakfast, take Tanner to school, get dressed, and play. Annebelle comes with me to run errands and go grocery shopping. We go to therapy and work on her motor skills and then come home to make dinner and settle down. Tanner plays with Annebelle and they (sometimes) share their toys. He is protective of his sister and does what he can to make her life easier.

Living with epilepsy is the hand Annebelle was dealt. When seizures happen, I drop what I am doing to comfort her and make sure that she knows she is not alone. I document her seizures and keep track of how often they happen and if she is developing a new form of seizure. I started an Instagram account to help raise awareness for childhood disabilities. I use this platform to share what our day-to-day life is like as a parent and a child with disabilities. I integrate all abilities into fashion.

Warrior Story provided by YOOCAN

 


My name is Lisa Causa, and I suffer short and long term memory loss as a result of epilepsy.

I have no memory of my life, my family, or my children. I'm slowly learning to live life day by day, but have also pulled away from people.

I don't remember yesterday, so....I don't remember conversations.  My old friends got frustrated with me because I don't remember and just pulled away.

What does a person do with their time when they know that the memory will be gone tomorrow?


My name is Olivia Blossom, and I am four years old. Today was my first day at "big school." A day my mummy and daddy didn't think would happen... I knew I would make it here, because I am a fighter.

I was born at 28 weeks {12 weeks premature} weighing just 880 grams, and at 2 weeks old I contracted NEC {inflammation of the bowl} and lost 12 centimeters of the perforated intestine. Shortly after I was diagnosed with a form of brain damage known as Periventricular Leukomalacia {resulting in cerebral palsy diagnoses}, Epilepsy and CVI {visual impairment} diagnoses soon followed.

Last year my weight dropped dangerously low, and I had to have a feeding tube inserted. Now my mummy makes me delicious/healthy meals that go directly into my tummy. In just a few short months I was healthy again.

We are so proud of everything our little sunshine has achieved, and her resilience inspires us every day. She is without a doubt the happiest little girl, and despite what she goes through there is always a smile on her face. We have had a very rough ride over the last four years or so with Olivia's eating rapidly deteriorating and requiring several procedures. We are currently working on raising her with more focus on embracing and supporting who she is rather than her disabilities.

Warrior Story provided by YOOCAN


 

Hey! I'm Alyrical, an epilepsy blogger!

My road to being diagnosed with epilepsy was a difficult one that lead to major changes in my life outside of my health. A few years prior, I had already had some health issues that caused me to go legally blind in both eyes. I remember I had my first grand mal seizure on a Friday morning, the first Friday my now ex-husband had probably been off in over a year.

All I remember is that I woke in the middle of the night and started listening to music, which lead to me falling asleep with headphones in my ears, as I often did. I later woke up to him hovering over me in tears frantically telling me I just had a seizure! I honestly couldn’t really comprehend what he was saying. Even when I was able acknowledge what he was actually saying, I did not have a full understanding of what seizures were. I was pregnant at the time, my mind instantly went to my unborn child, especially since I wasn't fully aware of what affects i could have. I just knew that I didn't feel okay.

I went to the hospital to get checked out, they didn’t say or do much but sent me home saying that I was fine. The next few days were hell, because I was in extreme physical pain, but I was also living in fear. “Why did I have a seizure?” “Should I sleep?” “Maybe I can’t listen to music at night anymore?” Crazy I know, but add in pregnancy hormones, and it’s not like the hospital offered any guidance for me.

Finally, I started sleeping a little but I was still asking myself “am I going to have anymore?” And I literally must have spoken it in to existence because I had another Grand Mal seizure. This time I fell out of my bed and cut my head on a glass table. However this time I couldn’t seek medical care because I had no one to watch my then 1 year old son, not to mention I wasn’t exactly excited about the wonderful care I received last time.

 

 

 

In a way it was ignored, until I started having what seemed like temporary black-outs and I found I was waking up on the floor home alone, with my child. My ex- flew my mother up to help. While she was there I woke up in an ambulance, with no recollection of how I got there because I had another severe seizure.

When I finally saw a doctor in the ER he just came in and said “the definition of epilepsy is to have more than one seizure and you have had more than one so you have epilepsy, I’m putting you on a medication to help control your seizures.” Well if you thought I had a lot of questions before, but of course numb I took my diagnosis and prescription and went home. The doctor prescribed me Keppra, however not only did it not control my seizures the side effects mixed with my pregnancy hormones were a special kind of hell.

I couldn’t understand why my body was betraying me, especially while I was trying to bring another life into the world. I felt lost then my mom who is in the medical profession suggested I come visit her, see some neurologist back in Florida where I have family and then return home. Overwhelmed by it all, and wanted my health and safety of myself and son first I decided it was best. However while down there I of course had to see an OBGYN to check on my pregnancy who then tells me at 22 weeks she is admitting me into the hospital because I’m already three centimeters dilated. Every time I had a seizure it told my body I was in labor, so I spent three long months on STRICT hospital bed rest. I was told that my daughter would likely be still-born, or have multiple birth defects. Thank God I went full term and she was born perfectly healthy with no complications during child-birth.

 

Those three months felt like an eternity at the time. A lot of people don’t recognize all the things that having epilepsy comes with outside of seizures such as nausea, anxiety, depression, family issues, and the list can go on. I personally didn’t recognize it and I was living it! My ex- basically abandoned me and our marriage fell apart, I suffered from postpartum depression, and I was extremely angry and resentful.

 

That is when I started blogging(Afro Mom) as an outlet and to bring awareness, because in my life didn’t even understand what was happening to me, some days I wasn’t sure! I continued having seizures despite multiple medications and changes in my lifestyle to point my doctor told me I have intractable epilepsy (epilepsy that can’t be treated by medications). I am currently anticipating an appointment with a new specialist at the University of Miami, the waiting time for an appointment was 6 months!

 

I am hoping and praying that this appointment brings some relief so that my seizures can one day be controlled! 💜

 

Follow Alyrical's journey on Instagram at: @alyrical & check out her blog at: Afro Mom

 


 

 

 

I'M EMILY SOFÍA HUNG CISNEROS & I HAVE RETT SYNDROME

Hi, I'm Emily Sofía Hung Cisneros, and I have Rett Syndrome. I am 6 years old, Venezuelan, and I live in Valencia, Venezuela with my parents (Nelson and Geraldine) and baby brother (Gabrie, who is 11 months). I want to tell you my story.

MY STORY: FIGHTING RETT SYNDROME

My parents were very happy when they found out that they were expecting me. I was born on March 5, 2011 and since that day I have been the princess of the house. Although I said my first words at 4.5 months ... "Mom," "dad," and "map," my motor development was a bit slower than normal. I sat at 9 years old, crawled at 11 years old, and stood up at 13 months.

Around 14 months, my whole family noticed that something was not right because I no longer smiled or played, I stopped talking, did not grab anything, and stereotypies appeared in my hands (repetitive movements without a specific purpose). That was when the visits to pediatricians, neurologists, and initiation of stimulation began with physical therapy and occupational therapy. My diagnosis was still incomplete, and the doctors thought that I had Hypotonia and possible Autism. I started to wander around at 18 months. At 21 months I had a genetic test for Rett Syndrome, which was positive. It was not easy for my family to understand and accept this diagnosis, but love can help anything. My mom, dad, and other relatives did everything to improve my quality of life.

LET`S TALK ABOUT RETT SYNDROME

According to the Spanish Association of Rett Syndrome, it is a rare disease that can affect 1 in every 10,000 - 12,000 girls born. It affects all racial and ethnic groups in the world. It is a severe neurodevelopmental disorder of genetic origin due to a mutation of the MECP2 gene of the X chromosome. The MECP2 gene is responsible for the production of a neurotransmitter protein necessary for the normal development of the brain. The genetic mutation that causes the syndrome appears randomly in most cases. The most severe disability of this syndrome is Apraxia, which is the inability for the body to perform motor movements. This affects: gaze, speech, hands, crawling, balance- basically everything that is movement related.

As Elisabet Pedrosa says in his book: Creatures Of Another Planet, a Chronicle of a Struggle Against Rett Syndrome, "it is as if an orchestra director wouldn’t be able to direct his musicians and they would individually play when they were come in will." Rett syndrome has no cure or effective therapies to stop the disease.

ANOTHER CHARACTERISTIC OF RETT SYNDROME IS EPILEPSY

My first seizure occurred when I was 3 years old. After a while I lost my muscular tone and fell to the ground. I took Trileptal (Oxcarbazepine) and Keppra, (Levetiracetam) but the seizures did not improve. I was an irritable girl who cried all the time. After almost a year of convulsing daily, I lost the ability to walk causing me to use a stroller daily.

In February of 2015, my parents took me to practice a Video Electroencephalogram of 72h (Video EEG) and my medication drastically improved my mood. I became a happy girl again who smiled. The seizures disappeared for about a year. Currently, my diagnosis is Rett syndrome / Drug-Resistant Convulsive Syndrome. I usually have two seizures daily even though I am medicated with: Topiramate * 150mg / day, Clobazam * 5mg / day, and Valproic Acid 450 mg / day. * These medicines are not available in my country due to the lack and shortage of medicines, that's why my family needs to import them.

MY RETT SYNDROME TREATMENT

To keep my quality of life I attend: physical therapy, occupational therapy, language therapy, psycho-pedagogy and hydrotherapy, which is my favorite. I need help for all activities, from personal hygiene (I use diapers), feeding and recreation as I do not have proper use of my hands. Also, my parents take me periodically to the neuropediatrician, psychiatrist, traumatologist, and orthopedist. I have to perform EEG tests in controlled laboratories (Rx - column, hip and feet). I also use feet splints (Static AFO) even though I do not like them.

Thanks to the continuity of my therapies, I have recovered the ability to walk. I am very clumsy and unstable, and I must be transferred into a pediatric wheelchair.

RETT SYNDROME IN VENEZUELA

I'm a fighter! No matter how many times I fall to the ground, I always want to keep walking despite being tired. Sometimes convulsions steal my strength, but with a little patience and rest I move forward with a big smile.

I'm also always fighting for access to my medicine. I have to seek help to receive my medicine, because the social and political situation in Venezuela is terrible. Medicine does not exist in pharmacies, and every day the cost of all basic goods goes up enormously.

If you want to know more about my story, please follow me on instagram: @unaprincesadeluz.

 

Warrior Story provided by YOOCAN


 

 

Running through the woods the wind is it in my hair. The sweat is dripping down my back and my forehead. I follow the dirt path through the trees up the rocks and down the hill. I am keeping up with the seniors, I have never run so fast in my life. I can feel the sun beating down on my body it is a hot summer day it must have been 90 degrees. So hot that I would give anything for a chilled glass of water, maybe a chilled glass of beer thinking back on it now and a cool fan or air conditioning.

I have waited since last year to race through these woods again with my teammates. Except today with not be like all of the other days or like last year when I ran these woods during preseasons and practice. Today will change my life forever today will be the first time I blank out and go searching for that chunk of time in order to fully grasp what has happened to me. I am almost out of the trail my lap is almost complete. I am so proud of myself. Suddenly I feel invincible, I fall to my knees and pass out.

I do not remember falling in the woods however that is what I was told had happened. I regain consciousness with all of my teammates staring at me in horror. Like I am missing body parts. Am I? ...wait it feels like they are all there? I look up and realize my assistant coach is cradling my head in her lap.

She is sitting criss cross applesauce as we say in the daycare, with my head in her lap. This is weird, I feel so uncomfortable here. So I sit up instantly, and as I do that I get a splitting migraine. Now I can see I am not bleeding except for a few scraps on my knee. What is everybody staring at?  I am fine.

My coach says “Chelsey don’t sit up too fast. You have passed out Krista said you fell over and when she turned you over you were blue. We have called an ambulance and your mom will be her soon Kari is picking her up now.” I don’t remember what happened but I really don’t think I need an ambulance. Within minutes I hear my mom panting and screaming my name.

Before I can respond she emerges from the trees and is standing there looking at me horrified. Is this a dream?  I don’t want to be here anymore wake up Chelsey. This is not a dream; this is my life.

My body feels sore but I can move my arms and legs. A few minutes later I am strapped into a stretcher and shipped off to Salem hospital with my mom in the back of the ambulance. No matter who you meet from the EMTs to the doctors you have to repeat to your full name, your birth date, the current date, your address. Everything except your shoes size... You might as well repeat that too for the 100th time. I want to yell at them leave me alone I don’t want to be here.  But instead you know they are helping you and/or need the information for their notes. So you comply and repeat it another time.

I had every test you could think of EEG, EKG, test for Lyme Disease, MRI, I can’t even remember the rest. The doctors were puzzled as to why I fainted in the woods that hot summer day. It is not 'til I had my next seizure in my bedroom. That the data was in, the diagnosis was that I had Epilepsy.

Epilepsy is pretty much when a person has seizures, and the doctors scratch their head and say “Wow, this is weird. Hey Chelsey, guess what!  We have no idea why you had a seizure, but yeah - that happened.“ (They would never be that honest, of course.) Oh guess what if it looks like epilepsy and acts like epilepsy it must be epilepsy.

So you are put in to this very broad group of people that may have seizures every day and may need brain surgery and/or need to take 32 pills to stop them from having seizures.

I have had four seizures in my whole life. I live like an average girl. I drive a car. I go to bars, clubs, dances, carnivals, and places that have flashing lights. They do not know why I have seizures but I still need to take my 600 milligrams of Lamictal every day. Two pills in the morning and two pills at night. (Now 300mg of lamotrigine once a day) I have no choice but to take them. I ask the doctors, and they have no definite answers (only past patient “research”) as to why I should take them. It seems to work.

The conversation with my doctors goes a little like this ”so I have had two seizure on my medication. Four seizures total.  Can you prove to me that this medicine is the cause for me recently not have seizures?” "We can’t prove it, but if you go off your medicine the likely hood of your seizures increase. People who go off their medicine may have another seizure with 6 months to year after not taking there medicine.” ”OK, but do you know a side effect of my medicine is seizures?”  "Well yes, there are risks to taking any medication.” They then say “Do you drive Chelsey and have a job?”  "Yes, I do. I nanny, and I work at a yacht club part time.” (Currently I work at a department store) “OK, could you get to those jobs if you couldn’t drive a car there?” “Probably but it would be hard.” “Taking your medicine decreases your risk of seizures, so you can drive.” “OK, but what effect will this medicine have on my body in the long term? If I have a baby... I am a women. What do we do then?” “Well you let us know you are pregnant, and we find a dose that is safe for you and your baby.” “OK, but how do these medicines affect me in the long run. Like, when I’m sixty and still taking this medicine... Can you tell me I will still be OK - still healthy?” "Well studies show that this medication is safer for you than other medication.”

I won’t bore you anymore with the details of my epilepsy. This chapter is my Epilepsy story from my first seizure to diagnosis and my Treatment.

Follow Chelsey's journey on Instagram: @Chelsey_with_a_y_

Hi, My name is Tia, I am 19 years old, and I live in Mandurah, Western Australia.

I am deaf and have an intellectual disability. I also have Epilepsy and Cerebral Palsy. I want to be a model, and for people to see past my disability. I am working to get my photo portfolio together. 

My parents have always been 100% behind me through the good times and the bad! My mum talks for me and types for I'm not able to do so, but she always makes sure it is basically my words she types or talks.

I love music, fashion, photography, and am looking to start up a small business in the future. My blog will be my personal journey after leaving school about me learning new skills and having fun.

Follow Tiaz's Journey on Instagram: @funknsoul97

Warrior Story provided by YOOCAN

 

Hi, my name is Jazz. I am 23 years old from Pennsylvania, now living in sunny Florida. I have used a wheelchair for 5 years due to a rare disease known as Transverse Myelitis. This has left me an incomplete paraplegic, but not with an incomplete life!

In 2014, I began playing sled hockey and was totally in love. I have been working my wheels off for the last two years to tryout for the women's national team. In August, I tried out and was able to make the developmental team! Despite struggling with epilepsy and a number of other conditions at the moment, I'm working towards building a better body to build a brighter athletic future.

Follow Jazz's Journey on Instagram: @keepingitjazzy27

Warrior Story provided by YOOCAN

We finally found a diagnosis: Epilepsy & Cerebral Palsy.

Our sweet Josie girl was born almost eleven months ago, and she has taught our family a lifetime of lessons already. Within hours of birth, Josie began having seizures. Watching our tiny baby seize over and over again while medications failed and doctors were left without answers was the most difficult time of our lives.

When we finally did get an answer, it did not come with any comfort. Josie has a mutation on the KCNT1 gene, which causes a very rare and severe form of epilepsy. There is no specific treatment, no cure. The few medical reports out there warn of other health issues, profound developmental delay, and a shortened life expectancy. Cerebral Palsy and Neurological Vision Impairment are also battles our daughter has to face.

Josie is beating Epilepsy & Cerebral Palsy every day.

Josie is a happy baby and is beating the odds everyday. She is not defined by her diagnosis, and we refuse to let her capabilities and quality of life be determined by some medical report. Josie is proof that miracles happen everyday and that someone's diagnosis will never be an indicator of their strength and resilience

Honestly, we wouldn't change Josie for the world. It's an honor to walk through life with someone who has such a special soul and big purpose. Now we choose to focus on the good moments of each day and continue to fill Josie's days with as much love and happiness as possible.

Follow Josie's Journey on Instagram: @jennyleepark

Warrior Story provided by YOOCAN

Hey, I’m Eva from the Czech Republic. I’m 16 years old, and I have epilepsy with grand mal seizures. It happened last year. It was 17/2/2017, and that day was so busy and long. I went for my training (street dance), everything was normal, but I was a bit tired. Then I felt like I couldn't see clearly… I was dizzy, so I went to my friend and touched her arms. I don’t remember the rest… I fainted. I woke up after 10 seconds, and o fainted again. It happened more than 20 times while they were calling ambulance. I was in the hospital for 2 months, without any diagnosis. The EEG and MRI were normal, everything else was okay, and so I went home.

After about 10 days, I was at home looking at Instagram and listening music. My father was cooking, so I stood up to go to the kitchen. I don’t remember anything afterwards. (Per my Father: I fell down, hit my head on the table, started to shake, and my eyes rolled backwards.) His dog was epileptic, so he knew what a seizure looks like. He immediately called an ambulance. I woke up in the hospital’s ICU the next day. Still without any diagnosis, they said that it’s a psychiatric problem, and they cannot help me. So they let me to go home.

Then after few days, it was like I was in dream all the time - sleepy and dizzy. One day I went to school like normal... hanging out with my best friends, telling jokes, and watching YouTube videos. After class, I walked with friends out of the class and downstairs, but in the middle of the stairs I felt so weird, as if someone hit my head. I had another seizure, injuring my head and arm. I woke up in ICU, intubated. The hospital did another MRI and EEG, which confirmed I have epilepsy, with grand mall seizures. They give me anti-epileptic medication, and I went home.

Then I had many small and some grand mal seizures, so the medication didn’t help a lot. The last seizure I had was while we was skiing… My legs started to hurt, and I wanted to stop. Instead, I went faster and faster. I can’t remember what happened next. (My friends said I was going so fast. They were shouting at me, but I didn’t respond.) I went so fast, skiing into the forest, and I hit a tree injuring my stomach and arm. They took me by helicopter to the hospital, where they changed my medication. Now, I’m 1.5 months seizure free, but sometimes I’m not responsive and space out.

Anyway, it’s not hard to live with epilepsy… I thought I wouldn’t be able to live with it. It’s actually not that hard, but it’s so dangerous. I hope that everyone who has it will be healthy soon.❤

Instagram:  @eeee_v

I was three years old, full of energy, smart, obedient, and experiencing evil first hand. My mom and Dad were divorced, which meant I was split between two homes. Problem was I didn’t know my father, he had left when I was too young to remember, but the courts ordered 50% custody to each parent. Within months of me having to split my time between two houses my behavior changed, and my eyes began rolling back in my head at random times. No one knew what was going on, but my father told my mom I was possessed, what he didn’t tell my mom was he was causing me a significant amount of stress; he was sexually abusing me. Doctors think my epilepsy showed up as a coping mechanism, but no one could be certain, it could have been a coincidence. Being adopted it was very hard to pinpoint why I was having seizures, now we know they are genetic, and the timing was coincidence.

Anyone who knows my mom knows she is a saint. Therefore, being the saint she is, she had me in therapy, took me to doctors, and did all she could (including kidnap me to get me away from my father) to protect me and find out why my eyes were rolling back. The only neurologist we saw told my mom I would probably out grow my seizures, or they would dissipate as my stress levels went down. They did disappear for about 4-5 years, but returned stronger as I reached my teens. My mom took me to a pediatric neurologist who put me on Depakote. I hated that medicine, it made me feel sick and I rarely took it as prescribed. I didn’t want to be the kid who had to take meds, I had already been the kid with headgear. Why couldn’t I be normal?

My seventh grade year I had my first grand mal seizure in the bathroom of Red Robin after a school dance. Everyone I cared to impress was at Red Robin, and here I was seizing on the ground in a skirt, and being carried out on a stretcher. If I could have switched schools I would have.

After my first seizure the kids started teasing me about my seizures. Thankfully, my mom had taught me to laugh with the bullies because it took their power away. The teasing was short lived, but the trauma wasn’t. I began to learn ways to hide my petite mal seizures, rolling my eyes on my own, looking away from people when I spoke, etc.

During high school I switched neurologists because I had aged out of the pediatric clinic I had been going to. My new neurologist was and still is my least favorite doctor I had ever seen. (We will call him Dr. X.) Dr. X took me off Depakote and put me on Zarontin, which made me sick to my stomach. All through high school I was rebellious. I smoked pot, cigarettes, and drank. I still got reasonable grades when I showed up at school, but I had found freedom in high school, and I wanted to use it to get away from taking care of myself and facing reality. I did notice that my anxiety and seizures diminished when I used marijuana.  Of course, it was not legal in the least...  My mom was appalled at the thought of me using, and I was one of lucky few to attend an emotional growth boarding school. Looking back, of course I appreciate the sacrifice my mom made, even though I was acting like many teens.

While in Boarding school I developed a love for running and joined the cross country team. Practice runs were the only way to get off campus without getting in trouble. I was running between three and six miles a day, my seizures were under control for the most part, and I had the independence I sought. I truly believe that boarding school was a blessing because I learned to identify my feelings, and examine the why behind my feelings. During this time I also rebuilt my relationship with my mom and [step] dad, and began the process of looking for my biological parents.

I found my biological mom, Erin, at age 19 and had a Grandfather for the first time in my life. I also learned I had a half brother and sister, and an aunt and uncle. God, the universe, or whatever you believe smiled on me and gave me an amazing biological family on my mom’s side, but still no sign of seizures in the family line.

Throughout my teens I didn’t have any grand mal seizures just petite mal. When I was 20 years old, my mom and I were visiting family in Idaho and I had my second grand mal. I was standing in my sister’s kitchen talking to her older kids and husband when I dropped. My sister, who was in the bath, jumped out and held me. That was the first time I bit my tongue. Solid food was difficult to eat for about a week and a half. My third grand mal came a few years later, and then they started to happen about once every other year. Throughout my twenties my grand mal seizures began to get closer together, never more than once a year, while my petite mal seizure continued to happen at least once a day on average. I went through spells when they were fewer and further between, but always there.

I had two terrifying seizures during my twenties. One of the worst seizures was while I was driving. Luckily, I was at a full stop and another driver saw me, put my car in park and got me out of my car. When the ambulance came I was taken to the hospital, but they did nothing. When I reported the incident to Dr. X, he simply smiled handed me my year of refills and sent me home. He didn’t report me to the Department of Licensing or suggest I stop driving... nothing.  The second scary seizure happened while I was home alone at my boyfriend’s house after a night of being out late drinking. I was talking to a girlfriend on the phone, having one petite mal after another and the next thing I know I woke up in bed. When I got up I was nauseated and blood was all over the pillows. I stood up and looked in the mirror to see my face totally jacked up. Evidently, I had a grand mal seizure while walking up the wooden staircase. I made it half way up, which means I came down that far. The bottom of the stairs look like a small animal had been sacrificed and left to bleed out. I still have a scar from that seizure.

Epilepsy can be incredibly defeating at times. Many of us have had to sacrifice things we love for our own safety and peace of mind for those who love us. I have been very fortunate because I have never been one to let limits prevent me from achieving the things I feel are important.  In 2004 I spoke about International Migration at the United Nations during the Nation Model United Nations conference. During the same conference I also chaired a committee and drafted the report on behalf of the 200 committee members. This was a highlight of my college years because our work was often passed on to REAL United Nations delegates. I decided I was going run a marathon before I turned 26, which I did accomplish. I trained myself for six months and crossed the finish line. Additionally, I have completed three Hood To Coast relay races. Hood to Coast is a relay race 12 person team that split up approximately 192 miles, and must be completed in 40 hours (don’t quote me on the time restriction). I also took up Snowboarding, which is amazing because I have zero seizures when I am riding. It’s almost like the peace and quiet put me in a zen state, which keeps my seizures at bay.

In my late twenties I was able to get a referral to one of the top neurologists in the state of Oregon, Dr. Paul Ash. Needless to say I left the care of Dr. X. Dr. Ash switched me off of Zarontin and put me on Felbamate or Felbatol, I can’t remember which is generic. Dr. Ash ensured I was safe, eliminating driving and baths. Of course I wasn’t happy about either of those changes, but I am alive! The new meds helped a lot! The drawback of the medication is that it is very rare and has to be ordered every month, there is a chance it could make my bones weak, and hurt my liver. I have to get blood tests often to ensure the meds aren’t hurting me more than they are helping. I was able to go back and get my degree at age 30 when my medication balanced out.

Unfortunately, the meds haven’t been 100% effective. I get breakthroughs close to my period, or if I am really tired. This past year I have had two grand mal seizures in three months, more than ever. One of my seizures happened while in the bath, luckily I had someone near by realize what was happening and get me out. Not long after I lost my job due to my seizures, and Dr. Ash retired. Sometimes the worst things seem to bring about the best outcomes. I have recently started the ketogenic diet, and it is helping a lot. Due to my new diet, I’ve been spending a lot of time researching, which led me to the Ketovangelist website owned by Brian Williamson.  After spending time on Brian Williamson’s website I reached out to him, and ended up emailing with someone close to him that has epilepsy and uses the keto lifestyle to control his seizures. The acceptance, hope, and peace I felt by simply emailing someone like me with epilepsy was overwhelming. I soon found Jade Nelson, and she connected me to LifeElektrik. I’ve also started reaching out to online support groups, and I am trying to save the money, or find a vendor I can work for so that I can attend Ketocon. My goals have changed. I am focused on creating a world where people living with epilepsy understand that we are the strong, we are more determined than we give ourselves credit for, and together we can overcome this. I am no longer concerned about my life being hindered by epilepsy, I am excited to walk in my “weakness” because I have now shined a light so bright on epilepsy that it has no power, I do. I stopped being run over by the bus, now I am driving it. Note: I also painted my bus purple, and put on some awesome music to rock out to while driving it!!

Epilepsy used to rule me, now I am in charge. I am putting my house in order and improving my life one day at a time. True strength is harnessing the power of lightening in our hands while wrapping our arms around the wounded, sick, and needy. I am a warrior, I am a winner, I am a world changer. Most important, I am at peace with the way I was made.

Hi, my name is Bronwyn Williams. I’m 42 years old and started having seizures in 2002.

Recently, on Monday 7th august 2017, I’ve just had a second diagnosis of epilepsy with non-epileptic events and focal seizures, which affect the left side of my face, after having a VEEG at Westmead Hospital.

Prior to a 2nd diagnosis, I was first diagnosed in 2004 by a neurologist after having my first seizure in 2002. Having had several MRI scans, which showed scarring on the right frontal lobe, it extends posteriorly into the parietal lobe (right frontal lobe gliosis) of the brain - My right frontal lobe is slightly smaller then the left. The scarring was due to a mild stroke at age 5 in 1980, and my very first neurologist thought it’s where the epilepsy originated. I have been on several medications, which some helped control the seizures, where others didn’t help control them at all. Because the right side of my brain is just a little bit smaller in the front part than the left side, it is an indication that the problem is seen in the right side of the brain - relating to something that happened a long time ago.

So, in the past year or two, I requested to seek another opinion of a neurologist - a fresh set of eyes. Then my local neurologist the 2nd one who I’m with now wasn’t even sure of my seizures, so this year or end of last year - I was referred to a neurologist at Westmead Hospital for some video monitoring (video EEG) where I was connected to a

machine for monitoring of the heart and video monitoring, with electrodes stuck on my head. Previously being in Westmead, for the monitoring I was seen on the ward by my neurologist’s consultants and registrars, which I showed videos of my seizures on my mobile from home. My neurologist at Westmead was consulted by his colleagues on Monday 7th, August and told I have focal seizures and non-epileptic events. I have had no seizures since 5th August. I had 4 in Westmead Hospital, while there for my VEEG recently.

My neurologist’s colleague took me off one medication, which puts weight on you, and changed my Keppra dosage. I have started taking Lamotrigine, and I‘m feeling great and happy that my seizures are controlled. I felt depressed, because I kept having seizures and felt disappointed. I’ve always remained positive, and now I have a positive result, having been nearly 3 months seizure free on the 5th December.

Bronwyn was recently featured in her local paper for her efforts in raising epilepsy awareness.  You can read that article here!

It was around mid June of this year that I had my first seizure. I was on the phone when all of a sudden this feeling that something awful was going to happen washed over me. The next thing I remember was waking up in hospital and being told that I’d had a grand mal seizure.

In the weeks following this, I started having a seizure every few days and then on a daily basis. A few weeks later, I was then diagnosed with epilepsy. It completely changed my life. I had to drop out of university and had to quit my job, I was absolutely heartbroken. I’d worked so hard to get to where I was and I was finally doing what I loved and I was so close to finishing my degree. This is something that I’m still trying to come to terms with but (if I can get my seizures under control) I should be returning next year.

I didn’t realise (until I developed epilepsy) that it was so much more than just seizures. Once I’ve had a seizure I can’t get myself out of bed, I spend most the day sleeping and I can’t really speak or hold a conversation. A few weeks ago, I had my first episode of Todd’s paralysis. I had no idea what was happening and it was traumatising. Now I’ve adapted to it and learnt how to keep myself calm when it happens.

I experience bad mood swings, I’m forgetful and I hardly sleep anymore. Not to mention the auras that I experience along with all that. The hardest thing I’ve found is dealing with the uncertainty of it. I never know when it’s going to happen and I have no control over it. It makes me feel so unsettled and nervous but I’m sure it will get easier in time. The medication I’m taking doesn’t control my seizures but I haven’t yet reached my target dose so I’m still hopeful that it might work.

I will not let my diagnosis define me. I will get my seizures under control and I will make it through the other side of this. Hope is the only thing that keeps me going.

Hi! My name is Robyn, and I'm an epileptic from Maryland, and this is my story. My story begins on the evening of December 30th, 2015. I was going into the kitchen, and then face planted between the kitchen and the family room. Apparently I had a seizure, but don't remember anything after that.  One of my parents called 911 and the next thing I remember is waking up in back of an ambulance going to the hospital. I only remember bits and pieces of being in the emergency room, so I'll just tell you what I do remember. I remember being moved from the gurney to a bed, I remember being brought in for a CAT scan, I remember the guy that took me, and I especially remember leaving the hospital.

Fast forward to a few days later my mom was looking into neurologists, and called my granddad (her dad) for some help. Since he used to on the board at Johns Hopkins, he used some of his contacts, which lead us to The First Seizure Clinic at Johns Hopkins. There, I had an EEG and a doctor's appointment. I had an MRI done on January 10th, 2016. Then, five days later, I was diagnosed with Juvenile Myoclonic Epilepsy, a lifelong seizure disorder. I've had four more several more seizures since being diagnosed. But I do make the best of it, though. Like I participate in Special Olympics Maryland and Best Buddies.

Epilepsy may affect my life, but it doesn't get to determine how I live it. I do!

“Mom!” “Mooom!” “Mooooooom!”

“Hi Henry. What’s up love?”

“Are you okay, Mom? You were shaking a lot.”

“I was shaking?”

“Yeah. I walked inside for a snack and you were shaking. You stopped but were sleeping and hard to wake up.”

“I’m sorry babe. I’m okay. Just tired.”

May, 2012. My sons and I were playing in our yard. I walked inside for a few minutes to get a drink of water. I hadn’t felt well. Sitting on our couch, I started to feel worse as two light spots crossed my vision. I woke up to my son, then 5 years old, yelling at me. My body hurt, and I was confused. I didn’t know what happened and couldn’t remember how or when I had come inside. I went to the hospital. The doctor wasn’t sure if I’d had a seizure from my son’s description. I was sent home.

Three months later I had another episode. I seized down our porch steps. A neighbor called paramedics and they were with me when I woke up. I was sore, bruised, scraped, and my mouth was bloody. I cried and cried. I was confused about what happened, and knowing I was going to lose my driver’s license was devastating. I loved driving. The doctor at the hospital wrote a referral to a neurologist.

The first neurologist that I saw didn’t seem to listen to me, or want to do any tests. Medicine was prescribed and that was the end of the appointment. I asked for a referral to an epileptologist.

Another seizure came in October. This time, I hit my head on our counter, chewed up my mouth, bruised my ribs, and woke up in bed, not knowing how I got there, with my clothes off. After this event, my epileptologist ordered an EEG and MRI, and prescribed Lamictal. I started the medication and the seizures stopped. However, I continued to have auras.

Auras. Prior to having any conscious impairing seizures, I had auras. I didn’t know what they were and had maybe a hundred of them before my first seizure. The first aura that I remember was during a study abroad trip to London in July, 2010. The seizures started my last year of earning a Bachelor’s degree, shortly after turning 27 years old. Trying to earn my Master’s degree seemed impossible. My career plans stopped.

With the auras continuing, my Lamictal dose was increased. It made me feel sick, I couldn’t eat, and lost 15 pounds in a month. I was told to decrease it. 18 months had gone by with no seizures and I could drive again. However, in March 2014, a month after the decrease, I had another seizure. This time, while driving. I count myself extremely fortunate. I crashed into a snow bank. No one got hurt, myself included.

Trileptal, an anti-seizure medication, was prescribed. The seizures were different while on meds. I didn’t fall or shake (known as tonic clonic seizures). I had complex partial (CP) seizures. When my CP seizures occurred, I was eating or drinking, most of the time. It didn’t matter what I was eating or drinking. I “blanked out” and was unresponsive. I made repetitive noises and motions. Some of the things I did are humiliating. I have tried to climb onto bay window ledges at restaurants, thrown my phone away, and taken my clothes off in public. I urinated during the seizures. I had them at my sons’ school, parks, restaurants, concerts, with friends and family, with my kids, and alone.

My kids have shown a lot of strength watching me have so many seizures. It affects them a lot though. Sometimes they don’t want to go places with me. The seizures made me not want to go places. My kids are typically the ones who explain it to others. The fact that this is what they know of me hurts.

My doctor wanted me to do VEEG monitoring. I did not seize during that monitoring. She told me to come back if I wanted surgery. The thought of surgery terrified me. I wanted another doctor’s opinion. At the first visit with the new epileptologist, he added Keppra to Lamictal and Trileptal.

The seizures stopped for 3 weeks. It was a huge accomplishment in my treatment. At the 3-week mark, I felt good and I wanted to get out of my house. I biked 8 miles to the beach to watch an amazing Lake Michigan sunset. As I was leaving, I bought a drink at the little store. An aura started as I paid, then a CP seizure came. The Dept of Natural Resources officer and EMS were called. People were pointing and staring. I had become a spectacle. I declined help and insisted I ride my bike home. However, I, again, was devastated.

Even after this seizure, going without one for 3 weeks was a positive. Keppra’s side effects were difficult though. I cried for three days straight when I started it and continued to cry all the time. I began to feel hopeless. Feeling like a burden to others was never-ending. Each time I had a seizure, I needed help with my kids. The seizures stole my energy and I felt trapped. I started having suicidal thoughts after taking Keppra for several weeks.

A couple of months after the seizure at the beach, I had 8 CP seizures in a 3-hour time frame, while cashiering at a book fair at my children’s school. I ended up having 16 that week. It was time for another VEEG.

I had another VEEG in January, 2016. The seizures came. During my stay, the doctors ordered a SPECT test (nuclear imaging). With the information they had from monitoring and the SPECT test, my doctor suggested surgery. He changed my meds to only Vimpat, which I currently still take. The depression improved, and I stopped urinating during seizures. Vimpat had its own set of side effects. I feel better but seizures continued. Between January and November 2016, I had almost 90 seizures.

After an MEG study, neuropsychological exam, WADA test, and more MRIs, I had an appointment with a surgeon. I researched, read the doctors’ studies, watched interviews, and talked to others that had surgery. I became a nervous wreck.

On November 14, 2016, electrodes were surgically implanted on both of my temporal lobes and I was transferred to the Epilepsy Monitoring Unit. Two auras came the day after surgery. My doctor came in with a smile on his face. He liked the information from the auras, but needed seizures. Even in misery, I understood. I had one while sleeping, that came from my left hemisphere. That was not typical for me and monitoring continued. Meds being eliminated, light tests, sleep deprivation, stress, and pain did not bring another seizure. After two and half weeks, my nurse practitioner told me the team found something on my MRI. With the info they had, removing a small piece of my brain was scheduled for the next morning. WHAT? The surgeon explained. I was scheduled to be in the operating room at 7:30am, December 2, 2016.

At 4:30am, my nurse came in; it was time to prep. Fear came in full force. As I was waiting in the OR prep area, I tried to hold back tears. My husband held me, and I didn’t want him to let go. When I got into the OR, the EEG tech greeted me. Tears started falling, I began shaking in fear. And the tech grabbed and held my hand. One of the surgeon’s assistants grabbed my other hand. As I type the memory of them showing their care, it still brings tears. The entire neuro team was amazing. The surgeon smiled at me, a mask was placed over my nose and mouth, and the anesthesiologist injected sleep meds. The next thing I remember is waking up in the recovery room.

It has been almost a year since surgery. I have NOT had a single conscious impairing seizure. I have had several auras. Luckily, they seem less frequent as time goes on. Through depression, anxiety, seizures, and med side effects, I try to focus on what I am able do. I can live. Really live. I want to feel like I’m contributing; I volunteer at the hospital. I want to be an amazing mom; we ride bikes, or walk to events, and I volunteer at the school. I’m not able to have the career I wanted; I work from home. I want to give back to the epilepsy community. I started casual epilepsy meet ups in my town because there aren’t any support groups here. I try as hard as I can to live happy.

To others having seizures: keep fighting. Find and do things that make you happy. Make yourself a priority. Having seizures is extremely difficult, but find the good in life. Make life good.

-Cheri Compton  @lakeeffectcheri

Hi my name is Casier. I have had epilepsy since birth and unfortunately the doctors didn't know why. By the grace of God, I was seizure free from age 10 until about 4 years ago, and BOOM!! Epilepsy is back. These pass 3 months have be VERY complicated for me tho, with the multiple medication changes and being unsuccessful. I stay positive through all that I’m going through by blogging and talkin’ to my followers - I thank you all for your love and support.
#epilepsyawareness #epilepsywarriors

My name is Melissa.  I’m 15 years old and this is my story.

On September 27, 2002 I was born and my mom knew there were going to be challenges from there for me.  I was born with hemiplegic cerebral palsy due to a lack of oxygen and a blood clot in my brain.  I had my first seizure shortly after birth. My seizures came back when I was three years old.  I was put on medication but kept having seizures. I have been through countless EEG’s, MRI’s, doctor’s appointments and medications. I recently reached three years seizure free, and I couldn’t be more grateful.  Though I still experience challenges, due to my medication and the side effects, I really hope to spread awareness and break the misconceptions.

Together we are strong!

 

Hi my name is Angelika.

I have had epilepsy since I was one, and now I am a adult living with epilepsy.

My family and God have been there for me through everything.  I believe my family and God help me stay strong.  I have a great support team that I can go to for anything.

What makes me get up every morning is looking forward to a new day and knowing that God is always with friends, my family and me too.

My seizure medicine is ok, but the side effects make me feel sick and tired.  My epilepsy is managed pretty well with my medicine.

I enjoy blogging, doing crafts, and spreading epilepsy awareness.  My goal is to spread awareness to everyone.  Especially this Halloween, you too get help me spread epilepsy awareness, by painting a pumpkin purple for epilepsy awareness for the purple pumpkin project.

Thank you,
Angelika

When I tell people that I walked 500 miles across Spain, people ask me why. They often don’t understand my answer – because I could. This is only true because my medication means I have been seizure-free for over 2 years.

My first seizure was over 6 years ago, when I was 21 and in my last year of university. In rather millennial fashion I was about to cook risotto for my friends, when sound engulfed me, and my vision faded to white. The next thing I remember is sitting on the sofa, talking to the paramedic. That was about 30 minutes after the clonic-tonic.

None of my flatmates had seen a seizure before, and luckily they did the right thing. One of them came with me into the hospital, both of us riding in an ambulance for the first time. I remember feeling nauseous, the paramedic giving me a little pill for the sickness. The next few hours involved blood tests, ECGs and questions. As a young woman with no history, among the many questions the doctors asked were the obligatory “have you been drinking?” and “have you been doing drugs?” The answer was no, and the asking felt so accusatory at the time.

The doctors put it down to a one-off. They let me go and I walked out into the arms of my – then rather new – boyfriend, and cried.

In the follow-up with the neurologists, it was decided that because I was about to eat, this was a faint. “Eat more regularly”, they said (an order I was quite happy to follow). “Don’t worry yourself”. But I remember the aching muscles after the episode, and the diagnosis of fainting didn’t feel right.

A year later was the second one-off. This time, I gave my boyfriend the ‘most affective wake-up call, ever’ when I had a seizure in my sleep. All I remember was coming to, worried I would be late for work, with someone looking over me. I had gone to sleep without a top on and there were now some wires attached to my naked chest. A mask was over my face. If I was more of a morning person, this would probably be the point I freaked out, but instead I let my boyfriend manoeuvre me into clothes and down the flight of stairs. I remember the ambulance inconveniently sitting on the busy road outside our flat in the morning rush-hour.

This neurology appointment agreed it was a seizure – but so far away from the last one, a seizure not worthy of the name epilepsy, yet.

It was around this time that I was working with children with special needs, some of whom had epilepsy. The training that I underwent for this work gave me an in-depth knowledge of the different types of seizure. I was witness to many clonic-tonics, and was able to get an idea from the other side. Despite this training, I didn’t recognise when I started getting auras and partial seizures a few months later.

Looking back, I know that I was ignoring something I shouldn’t. I was starting to get symptoms that should tell me something was wrong with my head – I was hearing voices. External sounds would be muted, and I strained to make sense as lots of voices whispered to me at once. I would pause, and it would pass. This happened a couple of times, until one day at work I heard these whispers, and then I lost time. I was in the staff room, and then I was on the other end of the building. I felt sick. My head hurt. I could barely focus and barely made it home on the bus. Later that evening, I found a plate from the staff kitchen in my bag – God knows why my seizing brain thought that was where it belonged!

I think it was that evening my boyfriend saw me have another one. To be honest, they begin to blur. But at least the cluster of them meant the neurologists could confirm it: I have epilepsy. Tests ensued – the electrodes glued to my scalp, the CT scan, the light sensitivity, the sleep deprivation. All to give me the really useful diagnosis of ‘low seizure threshold’ with no noticeable trigger.

In the meantime, I started taking Lamotrogine (my doctor was pretty good, and increased my dosage slowly so I haven’t noticed any side-effects) a medication that controls my seizures and allows me to live a mostly-independent life. So, I walked 500 miles of the Camino de Santiago by myself. It was hard at times, and I ached all over! But that is no worse that it feels to have a seizure – we all know one can drain you for days.

Epilepsy meant that I could not be as complacent and off-grid as I would have liked. I had the extra worry of getting enough medication to last the full length of my trip. Even without the seizures, the price of travel insurance was increased. I have to inform flight attendants whenever I get on a plane by myself and I had a little tag on my bag shouting “I have epilepsy” (the Spanish is tengo epilepsia) to anyone who is observant enough. I was told it made me look like Paddington Bear - “Please look after this Fran”.

But I wanted to do it – so I did. And I wasn’t going to let epilepsy get in my way.

If you’d like to see my walking adventures, head to my Instagram page:

@Frantictwalks

If you have epilepsy and are into adventures, please get in touch to tell me about it!

-Francesca

I will never forget the first time.

I can’t tell you what I felt like when I woke up that day or what I ate for breakfast. I can’t tell you if I was in a hurry to get out of the house or if I woke up with plenty of time. I can’t tell you if I made a cup of coffee before I left. Most importantly, I can’t tell you if I kissed my husband on my way out the door and told him that I loved him. I was in auto-mode, as many of us get in the morning’s. We go through the motions, not capturing and inhaling the moments that are happening right in front of us.

I can tell one thing. I can tell you the moment that changed everything.

I was driving, singing loud to tunes that were coming out of my speakers, feeling energized and ready for a great day and as I was coming up on my exit, it happened.

Have you ever felt a rush of emotions and you know that something isn’t right?

My stomach dropped farther than I knew was possible; farther than the bottom of a roller coaster, farther than jumping off a bridge into the lake. Immediately, I went into a state that is the most indescribable feeling that I’ve ever experienced. I was there, but not. My eyes never left the road and my hands never left the wheel, but ‘I’ was not there. I was in a state of what felt like deja vu, the taste in my mouth, the smells all around me, the people near me, and then it was gone. It felt like I woke up, and I was driving. Oh my goodness, I was still driving. What had just happened to me?

All day at work, I was distracted and could not get my mind off of the experience. After overanalyzing the entire situation for hours, I finally convinced myself that I must have just been tired. I wrote it off as nothing and didn’t even mention it to my husband when I got home.

__________________________

Fast forward one month.

____________________________

Have you ever felt like the world is spinning and you don’t know where you are…or who you are?

I remember opening my eyes. The person above me seemed very tall, or was my bed just lower to the ground than I remembered? Wait, this wasn’t my bed. The man above me began shouting commands to someone. I glanced down and I was in my pajamas, strapped to a bed. In an immediate panic, I tried to get up, but I was trapped.

“Ashley you are going to feel a poke ok”. I looked down as a man was sticking a needle into my arm.

I could hear questions all around me. Do you want another blanket? Are you cold? Where was she when this happened? Is this her first one? Is she on medication?

Then a face appeared and I heard, in a very slow tone “Ashley, I am your husband. I going to meet you at the hospital OK. These guys are going to take you there and I will be right behind you”. It was Adam’s voice, Adam’s voice! I knew who Adam was. But everything was so blurry and I couldn’t tell where his voice was coming from, then he was gone.

I started to hear questions again, but this time they seemed slower and we were moving. I began to realize at that moment that I was in the back of an ambulance.

“Ashley, what is today’s date?” I just starred at the man.

“Who is the president?” I had no idea who the president was.

I am in the back of an ambulance. I can’t talk. I don’t what the date is or who the president of the United States is. I am conscious, but not at the same time.

What happened to me? Am I alive?

________________________

Life with Epilepsy has been an adjustment to say the least. I am only 30 years old. How has my life turned into this? I have been an extremely independent woman from the minute I was born so this has been an extreme adjustment. I never knew that so much could change in 24 hours, but it can and it did. I went to sleep and when I woke up, my life had changed forever.

It was a hard concept to accept that I don’t have much independence. I have to ask for help often. The headaches never go away. I am tired every single minute of every single day and that’s with at least 10 hours of sleep the night before. Pills on pills on pills is the regular and they go in a Monday-Sunday casing that I have only seen my Grandma use. I know that the next one could happen at any minute, but I can’t stress because that also causes seizures. I get dizzy just from walking. My eyes go blurry when I look at a computer screen or the TV for longer than an hour. I am nauseous every morning and every night because of the 1500mg of pills that I have to ingest. I am waiting patiently for that moment that I can say I’ve been seizure free for 6 months. It may seem like a small feat, but it’s been a long road and I know the day will come soon.

As tough as this has been, life with Epilepsy has also taught me so much about life that I may have never realized if such a tragic diagnosis had never happened. Each day I get a little stronger. I learn how to find strength. I fight exhaustion every minute that I’m awake and embrace any moment that I have energy. I motivate myself and others through sharing my story. I learn to live a different life. I find peace in every moment I can. I challenge myself to ask for help when I need it and I don’t beat myself up about it. I convince myself that it's ok to lean on others. I adapt to pain that I never knew existed. I cherish the little moments because you never know what could be around the corner. I read every day to learn more about my brain. I smile every single day because life is worth living. I have an amazing partner in life that is my right hand and pushes me to strive for more. I learn how to fight a battle every day that no one could ever begin to understand. I am Epilepsy Strong and I will win this fight.

-Ashley Metzger

@ametzger8616

 

When I was first diagnosed I didn’t know where to turn, I was lost. What I had just been told was too much to digest. At 25 years old, having just graduated college, I now faced a condition which at any moment can snatch my day away and leave me in a daze, confused on the floor. Was this a joke? I was terrified, I was in denial, no way could this happen to me. However it was most certainly happening, and after that night my seizures became more and more frequent. I was inexperienced with epilepsy and so was everyone around me, my friends, my family, no one knew how to react if I had a seizure. Living in Durango, Colorado there weren’t many resources for me, not many neurologist nor support groups. I had to learn by experience, which lead to some very dangerous moments.

As my seizure activity progressed my seizures became more frequent and it became obvious that, after I walked for my graduation, moving back to Boulder, Colorado would be beneficial for my health. I settled in with my parents in June of 2015 and began to try and process what had happened in the last 2 months. My mother helped coax me into a few group therapy sessions, she thought this would help me process. I figured it couldn’t hurt or at the very least I might learn something, I agreed to go. Little did I know at the time how much these sessions would impact me.

Then in December 2015 something incredible, something remarkable happened. My seizures stopped, as suddenly and as unexpected as they came. They were gone! You can imagine my excitement! The month prior I spent a lot of my time in the hospital going through test after test to see if I was a surgical candidate. When I wasn’t going through some test, or neurological evaluation, I found myself debating surgery as a whole. There were two options for me at that time, the standard procedure with a scalpel or a newer less invasive procedure known as a laser ablation.

The standard procedure was more invasive, however had a higher likelihood of giving me seizure control. The laser ablation procedure until a few years prior was still considered experimental, and not very many hospitals could actually perform the procedure. The idea of brain surgery, any brain surgery terrified me. But, luckily now I didn’t have to venture down that road, or so I thought. I was seizure free, and thought it would last forever.

Fast forward 10 months, October 2016. Halloween to be specific. I was standing at my desk, dressed as Luigi, this was my first Halloween with a serious girlfriend and we wanted a couple’s costume. At the time I had a fantastic mustache so Mario and Luigi seemed appropriate. At my desk surrounded by coworkers I was struck again with a grand mal seizure. I fell to the ground, hitting my head on my desk as I fell and began to convulse on the floor. My coworkers were terrified as they watch me begin to foam at the mouth and my lips turn blue.

After making it to the emergency room the magnitude of the event began to sink in and I was infuriated! How dare these seizures return, and right in the middle of my busy day at work! Well I just could not stand for this, I immediately contacted my neurologist and informed her of what had happened that day. Within a week I was able to get in for an appointment to begin developing a new plan to return me to seizure freedom. This meant one of two options, more medicine or surgery. I was still hesitant to allow parts of my brain to be vaporized by lasers, the force was strong with me but I was no Jedi.

So I opted for more medicine, with little hope of this route actually working as it never had in the past. I was prescribed Carbamazepine and began taking it the next day. Just 2 days into starting Carbamazepine and I felt terrible, the side effects were awful I felt anxious, paranoid and mentally foggy. On top of the side effects I continued to have grand mal seizures, not as frequently as in the past but enough to discourage me further about medicine. My neurologist informed me there were other meds that I could try, but I had zero confidence in finding seizure freedom through medication at this point, something inside me changed that day.

I’m not sure exactly what happened, but by December 2016 I just knew in my heart that it was time to pull out the big guns. Or in my case the lasers. I remember thinking that this is not living, not being able to follow my passions and live my life the way I had known it was unacceptable. I love to rock climb, white water kayak, snowboard dangerous terrain and get myself lost in the woods. None of which had I been able to do at the level I was used to while my seizures were not controlled. I swallowed my fears and made up my mind to proceed with surgery.

My family was surprised, though they were supportive of my decision I think they were still afraid of the complications. Understandably, the possible complications ranged from memory loss, to paralysis, to death, the ultimate complication. However I was determined to get my life back, and surgery was seemingly the only way to achieve that. Being that I had already completed testing and was deemed a candidate for the surgery the only thing left was to schedule the operation. After a week of looking at possible dates the surgery was scheduled for February 10th, 2017. Just like that I had gone from hesitant, to being fully committed to having parts of my brain vaporized, I was ready for change.

Between the time of scheduling the surgery and having it performed I had multiple seizures of varying degrees of severity. Two that stick out in my memory, would be one the day after Christmas of 2016, and one in January 2017 in my girlfriend’s bathroom where she kicked down the door to get to me. Sara, my girlfriend, had been the strongest support system I have ever known, along with my parents. Her strength helped to keep me motivated when times were at their darkest leading up to the surgery.

February came as quick as a winters storm in the mountains, and with it my anxiety grew by the day leading up to the surgery. I knew surgery was my best option at the time, still I was frightened of waking up a different person, or not waking up at all. The day of surgery came quickly, I checked in and the nurses and anesthesiologist wheeled me back to the operating room. After a few questions and some anesthesia I was fast asleep before I could even see the operating table. Hours went by which my family said felt like days, when I woke up I thought I had just been asleep for a matter of minutes.

The surgery was a success, there were zero complications during the procedure and I was cleared to leave the next day. Now don’t get me wrong I felt terrible. The anesthesia made me sick as a dog and there were so many tubes and wires coming out of me I could barely move without something tugging on me. But I was breathing! I recognized everyone, I felt almost as if nothing had happened. In my mind I was ready to go back to normal life, to return to the life I knew and finally be seizure free!

The weeks to follow, were not nearly as easy as the surgery. I returned to my parent’s home to recover, they had fixed their work schedules so that one of them would be home during the day. I was extremely blessed to have support like this, they wanted to ensure that I would recover healthily. And I did, there were no infections or issues with my incision site. I didn’t have any tremendous headaches or issues with missing medication.

The medication you are required to take after this procedure is a steroid known as Decadron or Dexamethasone. This medication comes with a laundry list of side effects, everything from issues with appetite and vision to strange thoughts and extreme emotional highs and lows. It also needs to be taken on a very specific schedule with some doses needing to be taken at odd times such as 3:00am, needless to say I needed help taking the medication.

After tapering off the steroids I began to feel normal again, better than normal, I was no longer seizing or afraid of having a seizure! How then I slipped into the state of depression I did still baffles me. I went right back to normal everyday life as it was before the surgery. I went back to eating as I wanted (poorly), drinking alcohol and smoking. I returned to work, burnt out on what I was doing and wishing I was working outdoors again. I limited my physical activity with poor excuses I would make up on the spot, and for 4 months I continued in this sloth like lifestyle. Things were dark, I was unhappy but tried to put on a happy face, I could feel how this was negatively effecting my relationship with Sara.

Then 4 months later, June 2017, while I was sitting at lunch with a coworker. I had another grand mal seizure, knocking me to the ground outside our office. I awoke sitting on the curb drooling all over myself, the first words I recall were the paramedic’s telling me that I look terrible and that I was covered in drool. I was transported to Denver Health and after a brief stay in the ER was released with Sara. We drove to her house, and began to think about what was to come next. Knowing immediately that there was another surgery in my future.

After an appointment with my neurologist and a consult with my neurosurgeon we decided to schedule my surgery for late August. I had a very busy July and was moving in with Sara in August so it seemed like the most reasonable time to perform the surgery. June quickly passed and I hadn’t had another seizure, allowing me to work the majority of the month. In July I had a grand mal seizure on the 14th which caused me to go on leave from work. After that seizure, I had a cluster of focal seizures in the morning every day for a week causing me to be extremely sick for hours into the day vomiting uncontrollably. The seizures were getting worse, and at an alarming rate. I contacted my neurologist and we moved my surgery from the end of August, to the 9th of August.

The day of the surgery I was not nervous, I was not afraid, I was eager. Hopeful that this time, I would find true seizure freedom. This procedure was going to be slightly more invasive, again I chose the laser ablation surgery. However this time we would use two lasers and rather than targeting the scar in my brain, the target was my entire right hippocampus and most of my right amygdala. The goal was to mimic the standard resection surgery using the lasers. Having been through one laser ablation surgery I was much more confident in the surgery and less afraid of the consequences or risks associated with the procedure. I was admitted to the hospital and much like last time, only remember being in the hospital briefly before the anesthesia had me completely asleep.

After the procedure was complete I came to in the NICU much like the first, feeling nauseas, and my head hurt. I recognized all of my family members and knew why I was in the hospital, it seemed as if everything had gone perfectly. However there had been a minor complication during surgery that was about to make itself known. During the procedure the laser had caused a minor bleed in my brain, the blood slowly followed the track of the laser and began to pool in the back of my head. This was the cause of my worsening headache, and four hours after the surgery caused me to have a seizure in my bed of the NICU.

The seizure was able to be controlled with medicine and I came to within 4 minutes, terrified but I was alright. I was sent for an emergency CT scan, which showed a small edema in the back of my brain where the blood had pooled and caused the seizure. Now at first this was very disheartening, was this surgery all for nothing? Had my seizures found a new network to stem from? Luckily not, both my neurosurgeon and neurologist agreed that this seizure was caused by blood in my grey matter. Still after fully coming to and understanding what had just happened I was very upset, and I promised myself something.

I made myself a promise that I would fight these seizures from the inside. I promised myself that I would, become an advocate for epilepsy and SUDEP. I needed to give myself a purpose to continue to fight. Not to just return to normal like I had after the first surgery, but to truly become better than I was before. This meant a new diet, high in healthy fats and quality proteins while low in carbohydrates. Not a true Keto diet but something of a modified Keto. I decided to put a lot of energy into staying present, and trying to focus on mindfulness during my recovery to stay positive. I also decided to remove alcohol completely from my life, and quit smoking. These changes plus a dedication to spending as much time outside lead to something amazing.

Instead of going to my parent’s home to recover I decided to go home with Sara to our new place. This was a great decision, by going home with Sara I took responsibility for my own recovery. Sara helped a lot when it came to tracking the medication and cooking for us, but I became an active participant in my recovery. By taking on this responsibility I felt like I was more in control of my recovery then I had with the first surgery. I created small projects for myself and the satisfaction that came with completing these easy tasks, such as making the bed or watering the garden each day, made me happy and gave me a feeling of accomplishment. From this happiness, a strong sense of positivity began to grow within me.

This positivity was powerful and infectious, everyone around me could feel it and was blown away when I’d mention that I had recently had brain surgery. I was inspired to work towards a dream I have had for a long time, to become an American Ninja Warrior. My new found commitment to raise awareness combined with a desire to show kids or anyone affected by epilepsy that this condition doesn’t have to ruin their life. This motivated me to commit to starting training as much as I could. I was restricted by my recovery at first as far as what I could actually do to train. But by eating better and doing simple exercises I lost 25lbs in 3 weeks, and started doing easy workouts as soon as I was cleared by my doctor. 09/09/2017 marked one month of seizure freedom, and I would be able to get back to rock climbing and cross fit shortly after.

There was a stark difference between the recovery of my first surgery and that of my second surgery. Mainly my level of involvement in my recovery and my commitment to my own health. These two choices allowed me to find new ways to cope with recovery, such as mindfulness and nature therapy. I will tell you I’ve never felt healthier or happier in my life, I’ve never been more positive nor more motivated then I am now. All of which I connect to the choices I made in the NICU, after having the seizure from the complication. The choice to be better than normal, created a new me, from which positivity was born. I found a way to look at the challenges that epilepsy had created for me as a blessing. I’ve grown as a person, I’ve become more tenacious and stronger than I ever knew possible, because I have epilepsy.

Thank you for taking time to read my story. I hope it has encouraged you to never give up, to stay strong and know that you have the power to overcome adversity. If you ever have any questions or are in need of support please don’t hesitate to reach out to me. And keep an eye out for me on, American Ninja Warrior!

With love,

Kyle Parker “The Neuro Ninja”

Kyle@sledoutdoors.com

 

Hello Everyone,

I would first like to say that if you support great adventures and curing epilepsy, please also support me as I attempt to cycle around to world. I am trying to raise $15,000, of which the proceeds will go towards CURE (Citizens United in Research for Epilepsy). If you want to learn more please visit:

www.gofundme.com/cycle-around-the-world-for-epilepsy

My story doesn’t actually start with me, but with my sister. Before my sister had her first seizure, epilepsy was as relevant to me as what you had for breakfast, but one night all hell broke loose. It all started when my family was in Peru helping build a women’s shelter. We had finished our work and were taking a mini-vacation down to Machu Picchu when one night out of nowhere my sister had a seizure. This was in 2006 and my sister, who is two years younger than me, was nine at the time.

Naturally after the second seizure she went to see a neurologist and experimented with different medications, medication mixtures, and so on. Right now she has gone 3 years without a seizure. Irony of ironies, I also had my first seizure on foreign soil. It happened in 2008 in Belize where my family renovating a local church. We had just arrived in the country and I was unnaturally tired. I chalked it up to jet lag and didn’t really think about it. When we arrived at where we were staying for the duration of the trip I immediately went to the restroom and proceeded to black out. My mother, who was already a little worried about me and attuned to what a seizure sounds like because of my sister, realized what was happening fairly quickly. The floor and walls were made of rough cement though and someone had to climb over to help me. I still have scars on the back of one of my hands because of the cement.

Fast forward a few years and I’m in high school. I still hadn’t found a good combination of medications that work, but I had a great neurologist that listened to me and worked towards my well-being. The majority of my seizures happened in the morning shortly after I would wake up, so forget going to school that day. I had to get stitches one time because I hit my head on the tub and started bleeding everywhere. As of today though, I have been seizure-free for over three years now thanks to the support of my family and the hard work of my neurologist. I am also very thankful that my seizure medications don’t have any noticeable side-effects besides some forgetfulness. I sometimes wonder how different I would be without epilepsy because I am sure that the medications affect me on a subconscious level.

I am going into my senior year of college and hope to take up a career as a forensic accountant. Before I move any farther academically or otherwise though, I want to take a year off and travel around the world. What better way to see the world than on a bicycle, and what better reason for a marathon than epilepsy? Epilepsy is a disorder that, if nothing else, is severely underfunded and under-researched. I want to do what I can by attempting to raise $15,000 while I cycle around the world. The proceeds will go to CURE (Citizens United for Research in Epilepsy), so if you would like to donate or are at least interested in learning more, please visit:

www.gofundme.com/cycle-around-the-world-for-epilepsy

Thanks for taking the time to read my story!

- Austin Meservia

My name is Dannii. I was diagnosed with epilepsy about 7 years ago. I came home from a business convention trip went to sleep and my world was never the same again. My fiancé woke up to me the next morning having a BIG grand mal seizure and at the time not knowing much about epilepsy called 911 right away! As I was coming out of my seizure the only thing I remember is 3 big men around my bed lifting me into the ambulance, or should I say trying to lift me I was terrified about who these men were what they were doing in my house, and why the heck couldnt I walk!!! So I did what most people would do I kicked them away (let's just say I wasn't their favorite), but they finally won and got me to the hospital, where I was diagnosed with epilepsy and my life has never been the same. I have an extremely hard case. I don't seem to get real auras or know what my triggers are for sure. I've been on 9 different seizure medications...that I can remember, many MRIs, hospital stays, and even traveled to San Francisco for a MEG scan, but nothing that will show us exactly where my seizures come from, and without knowing that I don't feel comfortable with brain surgery at this time, but I do believe I can heal myself or at least make myself better than what I was with a healthy diet and exercise 💜💪

Hi Warriors,

My name is Jasmine Jamison, and I'm 27. My seizures started when I was 19 in 2009. I woke up on a stretcher at my previous place of employment being told I had a "grand mal" seizure. I had never heard of a seizure in my life or epilepsy. Since then I have had an average of one grand mal seizure a month.

I am a mom, going to school (undecided), and wanting to be an advocate for epilepsy as well. Epilepsy is a silent disorder, and it is not voiced like it should be. It not only affects humans but animals as well. I want to make it more aware to the world around us. So many people are affected by this disorder and many pass away suddenly.

I want this disorder to be known so more can be done about it. I hope my story helps someone.  Please research, and be more helpful to this need.

Please follow me at @embraceepliepsy

#WarriorWednesday #LifeElektrik #Epilepsy #Seizures #embraceepilepsy

Jasmine Jamison

You never forget that feeling. An Aura, such a beautiful word but the feeling that comes with it is so intense so profoundly visceral. Recognizable as the precursor to pain, even 3 decades later.

I was driving home from the accountant’s office, a beautiful July morning basking in the sense of unburdening that having sent in all of our business taxes had given me. Late but nonetheless done, another thing off the to-do list.  My life necessitated a long to do list. Together with my  husband I ran a business, for which I did the estimating, human resources, business development, customer relations and of course the bookkeeping. I was 46, a mother of three, a lover of the wild and the water, pursuing my masters while employed full time in health care. Ticking things of my to-do list kept our family and business running smoothly.   So it was a bit of a shock to say the least when I was struck by that acutely recognizable feeling of an impending seizure. My stomach leapt, my mouth watered, I swallowed compulsively and I thought, “ no, this is all wrong” . And then it was gone. I had never taken my eyes of the road, my hands of the wheel, never lost consciousness. But there was no mistaking -- something was wrong.

I was in denial, it was a Friday, what was I to do? It was 3 pm, my trusted doctor of 20 years had just taken an early retirement a week earlier, her replacement was not due to open her new office for three weeks. Surely this was a one off and would not repeat. Definitely in denial. The second aura hit me on Sunday, again no seizure but a clear indication that I needed to seek a neurology consult right away.   Monday morning I called the walk in clinic and they squeezed me in. I was out of the appointment, neurology referral in hand, in time for me to have lunch with my husband.

Andrew picked me up at work just after noon and as we rounded the first corner I was struck again, but this time it was a full blown seizure. I had time to say “Oh no!” before my head dropped to the window, the drool built up in my mouth, I felt my left hand twist out to the left, odd I had not recalled ever feeling that before, and I could not respond to my husband. He stopped the truck, called my name, I could hear every frightened word, but could not respond, until, of course I could. About 30 seconds after it began I felt the ebbing of the seizure replaced by the massive surge of nausea, odd again, I do not remember feeling lots of nausea in the past. I hastily rolled the window down and wretched.

Andrew was scared, he had never seen anyone having a seizure let alone his wife. I reassured him that I knew what this was. It was Epilepsy. “Why have you never told me you have epilepsy?” he exclaimed. I answered honestly,  “I didn’t think I did. Anymore” .

As a child I had had “spells”. Sometimes up to 20 a day. I remember vividly having my gaze locked on to the dash of our station wagon and calling for my mother as we drove to school one day, and then the saliva, and the feeling in the pit of my stomach and then it was over. They came while I was singing in choir, sitting in class, reading, they were short but exhausting and I would sleep for long periods after each one. But they never came while driving the tractor on the farm (yes back in the day 12 year olds drove tractors to help bring in the hay), or riding my bike. In fact they rarely came in the summer at all. Perhaps that is why the specialists never believed what was happening to me was neurological. The head of neurology at the highly respected Children’s Hospital of Eastern Ontario announced emphatically to my mother, a very savvy woman trained as pediatric nurse, that what I had was definitely not epilepsy as I was not loosing bladder control. As a result of his misdiagnosis I spent the next two years speaking with a lineup of psychologists and psychiatrist’s who tried to find the psychosocial source of my ever worsening “spells”. The year I turned 14 we moved into the country and right next door to an eminent neurologist. At the community Christmas party that year my mother cornered him and begged him to see me. The next week I was in his office having a battery of tests. The diagnosis was left temporal lobe epilepsy and the treatment was tegratol which I started immediately. I would have one grand mal ( generalized seizure ) a few days later and then be seizure free.

Being seizure free came with a cost. The Tegratol made me very tired and negatively impacted my memory. But I was seizure free and so it did not seem to be too high a price at the time. However by the time I left for university, it did. I had wanted to study medicine but I had given up that dream after I found memorizing impossible. The thought of going through university with mediocre marks was distressing and so I made a rash decision to stop taking my medication all together. Low and behold I remained seizure free. For nearly 30 years I remained seizure free. And so I moved on and forgot I had Epilepsy, until July of 2014 when suddenly I was forced to remember.

It just so happened that the son of the neurologist who had treated me as a child was also a neurologist and still in practice and agreed to see me right away. He ordered a battery of tests and put me on Keppra. And my world began to crumble.

We live in the country far away from any public transport. I could no longer drive, I had responsibilities at work which I felt driven to complete but having 4-6-10 seizures a day made that very difficult. When faced with adversity I tend to rise to the challenge, but in hindsight it was probably not wise to register for more courses towards my masters degree. But I needed to feel in control of something and I was not in control at all. As the seizures increased so did my keppra dose and so did the side effects of that drug. I could no longer manage my responsibilities to our business and my husband had to take on much of what I had previously done. He had to do all of the driving for not just me but also our busy teenage daughter and ageing parents. His burden from my illness was enormous. I was in tears daily, crying uncontrollably, and angry. The Keppra rage which is talked about is a reality and was frightening for my husband, my daughter and for me. The more burdens my husband had to shoulder the more guilty I felt and the more sadness and rage overtook me. I felt trapped, my work was telling me to take time off and I was refusing to acknowledge that I was actually sick. I was so afraid that if I took time off I would have too much time to think about just how devastating the situation was for my whole family.

August turned into September, I kept working from home, my mother in law sitting on the sofa behind me in my office just in case I had a seizure. And I did, many, and they got worse. From 30-45 second partials to full on tonic clonic Jacksonian march seizures lasting 4 minutes. I needed more control. So I began to chart everything. Time, day, time of cycle, medication dose…I was now at 3000 mg of Keppra a day, the maximum. And I began to notice some trends. My husband was not sleeping, how could he? every time I tensed up he jolted and called my name, afraid it was another seizure, often it was. He knew not to move me, that just caused more pain, he just watched the time, talked to me and stroked my head until my breathing returned to normal and I could speak to him again. I felt so guilty every time my seizures woke him.

My husband is the hero of this story. His love for me drove him to seek help from an on line community. It is important to understand what an introvert my husband is to fully comprehend the profound nature of the actions he took. On one of the facebook communities he joined he heard mention of a ketogenic diet and asked me if I had ever heard of it. Immediately my research began. When I asked my neurologist about it he replied “it only works for kids but try if you like”. By now my new family Dr was up to speed as well and although she had never heard of it she said as long as I could justify the tests I was asking for she would support me. I could not find a single nutritionist or dietician in the city who could help me work out a meal plan where I could get the right macros and the majority of my nutrients. But I was soon to learn that all the help I needed was in the online communities. Oct 23rd  2014 I started a strict ketogenic diet with less than 20 grams total carbs per day and moderate protein.  On Nov the 5th I had a 30 minute long seizure at home with only my frightened 12 year old with me. The next day I told my neurologist that the keppra was making things worse and that we needed to stop it. He agreed and asked me to cut my dose in half and prepare to start Tegratol again in one week. I knew that Tegratol would likely mean the end of my career and the thought of the side effects was terrifying. I cut my dose and filled the Tegratol prescription but I did not have a seizure that week. I had had over 120 seizures in three months, at least one a day and that week I did not have any. I dropped the Keppra again to 750 and a week later still no seizures. I went 49 days with no seizures. On day 49 I had a seizure (more of a strong aura)and realized when I looked at my very accurate logs that I was about to have my monthly cycle. In fact my charting had shown a clear spike at ovulation and just before my cycle started. There was a clear hormonal component to my seizure activity. More research ensued  and I cut all estrogenic food and agents, coffee, soy etc from my ketogenic diet and boosted all progesterone enhancing ones, Co Q10, vit E etc. I have not had a seizure since. Nor have I had an aura, I am medication free, working again, I was able to complete the courses I signed up for and have my license back again.

This way of eating has changed my life in so many positive ways. Before my Epilepsy diagnosis I had fibromyalgia and arthritis for which I took painkillers and sleeping pills when the pain became too much. I led a “healthy lifestyle”, low fat, high fiber weight watchers diet and exercising 3-5 x a week and still struggled with weight. In the first 18 months of a high fat moderate protein very low carb ketogenic diet I lost 90 lbs of fat and gained 20 lbs of lean muscle mass. I no longer suffer from any symptoms of fibromyalgia and no longer require pain medication for arthritis. I power lift three times a week and paddle competitively.

My blood work was mostly “normal” before I started with the exception of elevated inflammatory markers and a pre-diabetic HbA1c of 6.2 and was “optimal ” with an HbA1c of 4.6 and no inflammation 7 mos later. My caregivers are pleased as well, my family doctor has taken and interest and willingly accepts the journal articles I take to her. My colleagues at work ask for book lists and web links.    There are always those who are skeptical, always those who are shocked by how much fat I eat. But the numbers don’t lie. Two years after beginning with bacon bacon and more bacon, I now eat two meals a day, with much less bacon. I eat a lot of green leafy salads with healthy salmon or grass fed beef or locally, humanely raised pork and chicken. I usually eat in a 4 hr window ( fasting 20 hrs) because it is what my body asks for. When I am hungry I eat more, if I’m not hungry I do not eat. I am no longer a slave to the concept of three meals and two snacks, and everything I thought I knew about “healthy eating” has been questioned and for me at least, proven to be unhealthy. I am more physically active than I have ever been and healthier than I have been since my 20’s.

There are a few people in particular who have given me so much stellar guidance that I feel I might not have come this far, at least not this fast without their sharing of resources, journal articles, science, support, courage, and faith.  Dr. Eric Kossoff who took my call and gave me hope as well as information. Jennifer Pierce for teaching me to track and stay accountable and welcoming me into the bosom of a small but incredibly powerful online community where I found friendship, inspiration and encouragement. And most of all my husband.

My husband saved my life by reaching out to strangers. Strangers changed my life by sharing their knowledge and outcomes, and now I hope my story will change your life by inspiring you to make new choices, or support someone you know in their choices, no matter how “odd” they may seem, precedence has been set.

The other night I said to Andrew, “maybe getting Epilepsy was really a good thing, look how it has changed all of our lives, not just mine in the obvious ways but all of our health has improved and I am presented daily with ways in which I can pay it forward.”  One way is by interviewing others who have had success with a nutritional approach to their illness and by telling their stories at ketogenic.com .

And by supporting others who want to try a therapeutic Ketogenic diet with My website

www.ketoalldayeveryday.com

Warmly,
Gillian Szollos

I've had epilepsy a long long time, when I was about 10 months old I had my first febrile seizure. It was around midnight and my mom for some reason couldn't sleep and decided to come check up on me. When she found me I was blue in the face, not breathing, and inhaling my vomit!

Turned out that my first febrile seizure that lasted over 30 minutes! This caused scar tissue growth on my left temporal lobe. By the age of 6 I out grew those febrile seizures. From what I can remember when I was about 14 years old I would always get these things that I would always call fainting spells, because myself and doctors had no idea what they were! It always started with cold feet, a sick uprising in my stomach, feel a little out of it for about 1 minute and always ended in a hot flash. They always lasted 5 days in a row and I would get between 2 and about 25 every day! I'd get them about 1 or 2 times a month.

I've played sports since I was 4 years old! Started with hockey and soccer, and ended up playing high levels of both and my dad made me chose 1 of those sports. I ended up choosing soccer! I'm 6 feet tall and because of my height I was always a centre forward, every single team I've played for it was always get the ball to Brette's head! I had to give up when I was 21 because I've had 6 concussions that I know of, but doctors say I guaranteed have had more than I think! Turned out, doctors think my scar tissue growth could have grown due to concussions.

My seizures became stronger and stronger. I ended up having a grand meal seizure in my 3rd year of university while sitting in class and that's when they realized what I always called fainting spells, they were actually seizures!

I ended up getting brain surgery almost 6 months ago to remove a 4 cm in diameter scar tissue growth and since then I've been seizure free!

Epilepsy absolutely fascinates me, and my dream is to help those who do suffer from it! I've always been so positive and loved sharing my story with people and never ended up letting it affect me!

Brette

In the summer of 1987 I had my first seizure a month shy of my eighth birthday. During the Spring of 1988 I had a brain biopsy that determined I had a scar on the left side of my temporal lobe. I was official diagnosed with Epilepsy.

Over the next 30 years I would try over 10 medications, spend time in various hospitals and have many periods of being seizure free. The longest period was 6 years but in the end I would always have a seizure and I felt like I was starting over. My journey has been a long one but through it all I knew I was strong enough to handle it. That even on the bad days I knew there would be a light at the end of the tunnel. I just had to keep looking, I had to keep creating a life for myself, and I had to get out of bed every morning because that alone was an accomplishment.

Fast forward to 2014….I had a seizure during swim practice and this began another round of medication changes. I became very sick in the process. I ended up losing over 25 pounds, had every side effect imaginable, and was eventually diagnosed with a stomach gastritis. For the first time in my life I truly felt like giving up. In late 2015 I received a call from my little sister saying “you need to look into the ketogenic diet”. This is where the story takes a turn and I would finally see what living truly meant.

I went to my doctor and said “please take me off this medication, I want to try the ketogenic diet”. He sent me away with a titration schedule, the Charlie foundation website and told me don’t eat more than 50 grams of carbohydrates and as much protein as you want. For the first time in a long time I felt hopeful and I had a purpose and it was “to heal myself”.

I would end up spending a year figuring it out. I spent hours researching, reading and looking for new recipes that were keto complainant. During this time I started an Instagram account sharing my journey while looking for others like myself. I struggled in ways I never thought possible physically and emotionally. But I kept pushing forward because I wanted a “new normal”.

Today I am seizure free and on the least amount of meds ever. The diet not only controlled my seizures it helped me understand my body, decreased muscle pain and inflammation, healed my gastritis and helped eliminate depression.

Today you can find me educating others about the diet, speaking to groups about my epilepsy journey, and organizing community events. If you are living with Epilepsy right now, know that you are stronger than you think. Don’t give up, don’t lie down and don’t stop trying to find your “new normal”. Make healing your fulltime job. Make time to research, read and educate yourself about your diagnosis. Living with Epilepsy can make you feel like you have lost control but taking responsibility for your own health is the most empowering thing you can do. Become an active participate in your care!

References:

Titration: The continual adjustment of a dose based on patient response. Dosages are adjusted until the desired effect is achieved. Example: coming off medication

Charlie Foundation: www.charliefoundation.org

Instagram account: @thetraininsideme

Hello everyone,

My name is Zakariae. You can call me Zack. I am 22 years old, and I live In Morocco.

Well, I would like to share with all of you my story (E. story.) As I‘ve already mentioned, I am from Morocco, which means English is not my native language, so I am sorry about any spelling mistakes…

My story with E had begun when I was 11 years old, and at that time I had just one single seizure at 2:00 A.M. My parents and I were so confused, we had never experienced such a situation; I actually was so scared at that time. I just didn’t know what was going on.

We didn’t do anything about it until one year later, when the seizures came again, but this time it didn’t stop - until now. We had decided to go and see a neurologist.

So, we started to try to find the best meds that would control my seizures, but struggling with seizures, it took about 1 year to put it completely under control. During this unforgettable period, I had been through the worst days I’ve ever experienced in my whole life.

Of course you know that scared feeling, when you are like 12 years old, and you’ve been told that you have Epilepsy, and you don’t know what heck is that means. All you know is that you are frightened of that monster beat you down several times a day called SEIZURES.

But the most dangerous moments are when I had seizures in pubs… In my community, there are very few people who know what Epilepsy means, so I had been so close to death many times. You don’t know how much I suffered from that. People just wanted to help, but in fact, they were about to end my life…

Each time I had a seizure in public, people wanted to pour water in my mouth during the seizure, and of course I can’t do anything but look at them, because I was out of control … Hahaha! It’s really bad, when you’ve got nothing to do but to watch people killing you. That was in the early years.

You see how Epilepsy sucks! So yeah, I was lucky to stay alive ‘til now. This was my story guys; I am very happy being around people who can understand & feel me, even in a virtual world. J

I'm Morgan, a performer from Toronto with epilepsy. My journey began February 6th, 2012 when I was 17. I had 2 seizures prior to my diagnosis and have had 16 since.

Dance was always my purpose, I loved to perform and so I pursued it and continue to pursue it daily. After my diagnosis I went seizure free for 2 years and in the last portion of the 2 years I actually began performing on cruise ships. Unfortunately, due to having an epileptic during a rehearsal, I lost my dream in 2016. It truly was devastating and it took half a year and 4 more seizures before I finally took control.

I am now 4 months seizure free and an ambassador for epilepsy awareness and breaking the stigma that exists in the Epilepsy community.

How fortunate are we as epileptics to be apart of an elite group of incredibly strong individuals. We have to potential to inspire everyone we meet with how we've battled our disorder and supported others.

To all my friends struggling, remember this- don't settle. Don't compromise your happiness because you have seizures. Take advantage of the opportunity to be your best self, strong and inspirational.

Morgan Slayswicz
@epilepsyqueen

 

I dreamt of my unborn child's life~how perfect it would be in every way. On Mother's Day, May 9, 1982, GOD blessed me with my first of three precious miracles of life. She was a tiny little creature with dark hair and beautiful eyes. I loved her from the moment I found out I was going to be a mom and when I saw her for the first time, my heart would never be the same. I was completely overwhelmed with love.

She grew into an adorable blonde haired & brown eyed girl. She had the normal childhood colds and ear infections. Life was full of everyday giggles and woes.

Then, at the age 14, she was having a day at the beach with her dad. She had a fainting episode. We assumed it was the heat and not enough fluid intake, but I took her to the doctor for an evaluation. They performed some tests and then diagnosed her with hypoglycemia. The doctor suggested she keep peppermint or some form of candy in her purse when she began feeling weak. It seemed like an easy enough fix to the problem. Everything seemed to be going well. The next episode occurred after giving blood at school during a blood drive. The loss of blood we assumed was the culprit. Each episode seemed to be reasonably explained away. The next episode I remember was during her freshman year at college. We explained that one away with lack of rest due to late night studying, improper nutrition...just not taking care of herself with all the new demands of college life. She was attending SCAD (Savannah College of Art & Design). The next episode was during her senior year of college. She had transferred to AIU (American Intercontinental University) and was living in Atlanta. She called me and told me she had gotten up from the table and fell flat on her face. She didn't know what had happened. She woke up and saw her boyfriend, Brek, looking at her. She was crying, scared and upset. He was scared and upset as well. I had no idea what could be wrong. All these questions were running through my mind. I was four hours away and desperately wishing I was there with her in that moment to reassure her that everything was going to be okay. I was so thankful Brek was with her. She had an appointment with a physician who recommended an EEG. After the test results came back, he diagnosed her with Juvenile Myoclonic Epiplepsy. We were at a loss! We couldn't believe this! Epilepsy?! I didn't know anyone with epilepsy! Christalle asked if anyone in our family had epilepsy. To my knowledge, no one in my family or her father's had it. The doctor prescribed Lamictal and the world changed. My beautiful, creative, independent, & strong willed daughter became moody, angry, isolated, misunderstood, sad...the adjectives are endless. I had no idea what to do. I loved her, hurt for her, wanted to make everything better, take the epilepsy from her, etc but felt completely helpless, as she did. She felt like no one understood what she was going through. Everyone else had their wonderful carefree lives and now hers was different and no one really cared. It felt like a wall was around my daughter and no matter how hard we tried, we couldn't tear it down.

She worked hard to figure out her new life journey. She completed her studies, obtaining a degree in fashion design and marketing. She graduated Summa Cum Laude. She began applying for jobs and was offered an amazing job at Black Box Distribution in California. She & Brek moved to California to begin a new chapter in their lives. The job was going well and they were settling into their new life on the west coast. Things progressed at a steady pace for 2-2.5 years. Then, the company downsized due to budget costs. Being one of the last employees hired, she was let go. Lamictal was expensive, and she wasn't able to afford the cost after losing her job. She had already discussed stopping the Lamictal due to all the side effects she was experiencing. It was causing mood swings, angry outbursts, fatigue, nausea, loss of memory, hair loss, etc. So, she used the last of her medicine to wean herself off of it. She did a lot of research pertaining to controlling epilepsy with diet. She found that eliminating soy from her diet, getting plenty of rest, & restraining from any alcohol intake, & eliminating stressors helped her prevent further seizures. She has been seizure free over a year now!!!

Of course, as we all know, eliminating stress isn't easy. Nothing about epilepsy is ever easy. It certainly isn't a journey anyone of us would choose for our children, and they definitely wouldn't choose it for themselves. It can cause pain, isolation, anger for the loss of a kind of life we once hoped for/had. I only know the devastation that Christalle's epilepsy has brought to her life. I also know how absolutely blessed we are that she can help control her seizure activity with diet and proper care of her body without meds. I know how strong willed my daughter is and I never imagined, when she was small and so independent, that her strong willed personality would serve to aid in her ability to be a warrior against her epileptic fight.

As a mother, I can speak through the love I have for my children. We would do anything to take their pain away. We want our children to be healthy and have a perfect life & a wonderful future. Life's journey has twists and turns regardless of our path. We just have to learn the lessons our path has to teach. We have to try to find the best possible way to take care of ourselves. We have to be thankful for all the days we can say there were no seizures. For every day that we see our children accomplishing their goals & achieving happiness, we have to appreciate all of our blessings.

My daughter, Christalle, continues to fight the fight. She is inspiring others and trying to bring positivity into their lives by sharing her story and those of her fellow warriors to make sure no one else feels isolated and alone. Epilepsy is a difficult walk of life, but it isn't an impossible journey. I continue each day to see the strength this journey has caused my daughter to obtain & exhibit. I couldn't be more proud. I am so thankful GOD chose me to be her mother. I am thankful for the opportunity to have taught her lessons while she now teaches me lessons as well. We can all learn from each other, sharing trials, love, & encouragements. With each other, fighting this fight, we can be WARRIORS for the fight against epilepsy!

💜 Dawn Hicks

Hi! My name is Declan, and I live in the UK. I’ve had epilepsy for the past 20 years.

For the past 10 years, I have had severe seizures, and my Neurologist told me this is due to my sleeping patterns. At that time, I was working nights and not getting enough sleep.

Since receiving this information, I have changed my sleeping habits and started working different hours. I am now working the day shift from 8am-4pm. This allows me to have more consistent sleeping habits and a better quality of life.

In addition to changing my sleeping habits, I also changed my eating habits. I now eat a more healthy diet and it has also helped decrease my seizure activity.

Living this way has changed my life, and I have been seizure free for 6 years!

God Bless,
Declan Odonovan

From the Heart of a Sister. . . . By Maria Padgett

Wednesday, May 17, 2017, changed me.  I’ve yet to understand the magnitude and scope of those changes.  However, they are undoubtedly, whole-heartedly, life-changing.  Let me explain. . .

My brother, Kevin, developed adult-onset epilepsy about the age of 33.  Through a myriad of seizures, many being gran-mal clusters, and several trials of a cocktail mix of medication, he had most recently settled into, among many others, a powerful dose of Keppra, twice daily.   Quickly, the side effects of medications began to overwhelm him.  Kevin was caught in a vortex that he could not shake.  

Prior to being affected by epilepsy, my brother was a youth minister, youth outdoor advocate, hiker, camper, climber and a true lover of nature.  He was married and had a son named Dax.  Kevin was fiercely protective of his family and loved his son more than I can describe.  He had the most amazing infectious giggle.  (He would roll his eyes at me right now if he heard me say “giggle.” Lol )  You just couldn’t help but feel the powerful presence he had when he walked in a room.  His striking blue eyes were just one of the attributes that made him and his personality magnetic.

The days following the diagnosis were touch-and-go for a long time.  We as a family were learning that day-to-day life as we knew it was changing.  Kevin’s personality changed in unnerving ways.   He became severely depressed, anxious, irritable.  He started drinking alcohol to numb the pain and the “feelings” he couldn’t explain or make go away.  My brother had not been a drinker, at all, until that time.  His marriage ended and the depression grew deeper and darker.  Kevin had become a shell of the energetic, vibrant man he had once been.  We also learned he had developed a very disturbing habit that caused legal trouble for himself.  Times were so very hard.  We had no idea how to help him.  His pride didn’t allow us in.  There was no family member he gave permission to help him with medical decisions.  He insisted on going to appointments by himself.  We wanted to support his fight to be independent and to regain life on his own again with his son.  Yet, living with our parents was the only option for Kevin, as he couldn’t drive for almost a year, because of the succession and grades of seizures.  Life was excruciating for him.  It was hard to watch while feeling so helpless.

So, on that Wednesday in mid-May, my husband and I were on our way back home from a business trip to Atlanta.  Kevin had been held under bond by authorities since the Friday before, yet had been released to my parents on Tuesday.   At 12:58pm I called him, just wanting to hear his voice and check in.  He didn’t answer at first.  Then, I tried a second time.  Just before his voicemail came on, he picked up,  “Hey Ria!  What’s up?”.   I described our weekend and let him know about what time we would be home.  I (in an upbeat tone) asked how he was doing.  He just simply responded, emotionless but not alarmingly, “I’m ok.”   We went on to discuss the family dinner planned for the following night, as well as us both looking forward to our niece graduating from high school the coming Sunday.    He said, “Sounds good.  I’ll be there.  See you then.  Love you.  Be careful coming home.”  I said, “Will do.  Love you too.”

After getting home I quickly joined the family in all-out-panic, as we realized Kevin had not been heard from, seemingly since I last spoke with him.  I was on the phone with my father when he said, “Hey hun.  Let me call you back.  Someone is coming up to the door.  Keep trying to call your brother.”  Minutes later, my sister called me and said that the sheriff was there with her and our parents.  At 4:07pm, my brother had been found in his SUV with a self-inflicted gunshot. He was only 42 years old.  We are still in shock.  We miss him so much, yet none of us would bring him back if we could.  We realize even moreso now how tormented he was and how hard he fought -- for years.  I have no idea what we could have done differently, other than maybe insisting he give permission for one of us to hear from doctors alongside him at all those appointments.  Maybe.  Hundreds of questions and what-ifs scenarios paralyzed us in disbelief.

In an effort to honor my brother I decided to share a bit of his story on the Facebook Epilepsy Awareness Group page.  I’m attaching the blurb I posted in that forum along with some of the comments and my own responses.  My brother was a part of that group and invited me to check it out.  I have been so blessed communicating back and forth with many in similar situations.  We are family and are a part of something few understand. It is my desire to continue to educate myself and share with others on the reality, devastation, hopes, dreams, and conquering efforts of the harshness so many live with.  Feel free to reach out to me.  I claim no proper medical knowledge in the field of epilepsy.  I’m just simply a sister who continues to love her late brother, in hopes of bringing love and light into a lonely darkness.  If I could hug you all, I would do it.

 

 

 

 

 

 

 

 

My brother, Kevin.

 

FB Postings:

“IN REGARDS TO THE STRUGGLE..... The struggle is so very real. Please fight it through. Do not give up. Push through every day. It's hard, but press back. Live as much as you're able......My wonderful beautiful brother, who had epilepsy, fell into debilitating depression, angst, fear, and a life that resembled nothing like the man he was. He committed suicide one month ago.......So on behalf of your families and those who love you most.......press through!!!! Keep believing in healing and restoration!”

~”The depression is debilitating. You fight through it and have a day or two where food taste good again and maybe even some joy, just to have another seizure and it starts all over again. It's no way to live. All fights have a limited number of rounds, and sometimes you just have to ring the final bell yourself.”

~”The scary thing is that I absolutely see so clearly how it happened. However, I beg all who deal with such darkness with this disease to please push through. Pull out all the stops to keep pressing through. Taking your own life is NEVER, EVER the answer. My heart hurts for those hurting as my brother did. That kind of pain is something very few really understand.”  Me

~”Please hold on.” Me

~”THANK YOU FOR POSTING THIS”

~”Thank you.. everyday is a BATTLE of the mind. Much love.”

~”My condolences to you in the loss of your brother. My 23 year old daughter has had epilepsy for 5 years now. She is fighting this everyday and we're standing right along with her on this fight. I see how every single day is a struggle for her. I pray one day there is a cure for every type of epilepsy out there. Thank you for sharing this. Fight on everyone!”

~”Thank you for posting and sorry for your family's loss. I have two teens who have epilepsy. It is the battle of all battles and our family stands with the two warriors everyday. Hugs and prayers.”  

~”No kidding we all go through this just about every day of our lives.”

~”I am so sorry for your loss. As a suffer of this horribly debilitating disease I can see why he choose to end his struggle as I frequently argue with my own ending but if I knew I had amazing caring family like you the struggle would be a little easier. Hold your head high knowing your brother may be gone from his physical body but his spirit will forever live through you and your family! Thank you for posting as hard as they are to read sometimes I think they are the only things keeping me strong enough to know I have to keep going to spread awareness about this disease. Stay strong!”

~“Bless you. I know from watching my brother suffer it is beyond what onlookers can comprehend. I would happily become a "virtual family member" for anyone needing an extra voice of love, support, and encouragement. Please message me anytime if you need. It's a way I can continue to love on my brother in sharing with and loving on you guys. I am here. Thank you for your kind words. We all are just taking a day at a time working through the unknown......But we CAN do it. Hugs.” me

~”Thank you from the bottom of my heart, having even virtual family that is supportive is a blessing. Its funny how I have been on a few epilepsy support pages read a lot but never wrote anyone. You can truly feel the love you have not only for your brother but other suffers. Thank you so much!! “

~”So sorry.”

~”So sorry for your family's loss.”

~” My heart hurts for you. It's so hard when your body becomes a cage. This can also feel like your loved one is trapped in a cage and sinking, and no one has the key. Much love, prayer and sympathy to you... and much understanding to both your brother who lived it and your family who survived it.”

~”Thank you so much.  I couldn't have described it better. This thing becomes monstrous sometimes to many it affects. It's heartbreaking to watch. It's my desire to learn how to instill hope to replace fear and a spirit of "fight" against it when it attempts to overcome those it touches. My heart goes out to all who are affected in any way. Thank you for your kind words.” me

~”Thank you for posting this up about your brother and the love you have for him watching his struggle daily. I also have a daughter who will be 30yrs old and I have also seen how monstrous it can be. But we are standing strong in helping her walk with God daily. So sorry for your loss and believe he is in a better place.”

~”Thank you!   I believe you're absolutely right! I miss him so badly, but wouldn't bring him back if I could. There is peace in knowing he is no longer in torment. I appreciate your kind words.”  me

~” Thank you may God’s peace be with u and ur family and for us we're thanking God daily for the love he gives us to encourage them to see beyond their struggles.”

~”So sorry, praying for your family.”

~”Sorry for your loss. I get how people might give into that because of this. It's a hard life but I try to stay positive.”

~”I'm so sorry for you all. My husband has to watch me and my pains. I don't know which is worse, my battle with meds or his to see me suffer.”

~”It's just tough for everyone. Thankful you have him for love and support.” me

~”Thank you for this baby, so Very Powerful! The struggle is so very real and so very rough. Your brother was Blessed to be loved and to know that he was LOVED! The depression is so very rough,even more so when you have no family you can call on. You are an example for others baby.”

~” If it wasn't for my family being there for me through my major depression a couple years ago I probably would have ended my life. I was going through the suicidal thoughts, suicidal nightmares, turning away from god, sleeping all day. Now I'm a youth leader in church, I'm a purple belt in karate, I do church league bowling, I will be my sister's maid of honor in her wedding next month. So I thought about what all I would miss and who all I would leave behind if I did that.”

~”Oh Friend!  Thank you so so much for sharing!  I'm so thankful you found your way out of that pit! I rejoice with you and your family in celebrating life! The fight is tough, for sure. So thankful you have a great support system! I pray for healing over you and a strengthened active life!!!! Wonderful! Hugs!” me

Final Note:

It is my desire to continue to educate myself and others on the reality, devastation, hopes, dreams, and deliverance of the harshness so many live with.  If I could hug you all, I would do it in a second.  We are family and are a part of something few understand.  Feel free to reach out to me.  I claim no proper medical knowledge in the field of epilepsy.  I’m just simply a sister who continues to love her late brother, in hopes of bringing love and light into a lonely darkness.  

Truly,

Maria Padgett

 

Life Elektrik:"What type of seizures do you have?"
Mandy: "I have JME - Juvenile Myoclonic Epilepsy which includes Clonic and Tonic Seizures."
Life Elektrik:"At what age did you start having seizures?"
Mandy:"19 years old."
Life Elektrik:"At what age were you diagnosed with epilepsy?"
Mandy:"25 years old - thank God! 🙏"
Life Elektrik:"What methods of treatment have worked for you?"
Mandy:"I have an amazing Neurologist that in working together with me has found the correct mix of seizure medications as well as organic methods."
Life Elektrik:"What helps you to stay positive, in regards to having epilepsy?"
Mandy:"Waking up every day alive and well! Going to bed knowing I didn't have a Grand Mal seizure for about 5 months."
Life Elektrik:"What do you wish people knew about epilepsy?"
Mandy:"It's not as scary as it seems and you CAN have a "normal" life - well, your perception of the life you want."
Life Elektrik:"How do you help raise awareness?"
Mandy:"I am a semi- active Administrator of a Seizure/Epilepsy Disorder Support and Awareness social media page. I also openly and happily share my story with anyone who asks or is willing to listen."
 Life Elektrik:"What are some challenges you've faced, having epilepsy?"
Mandy:"Hands down - staying positive! Relearning structure and understanding that my life is not a burden to myself or others. Also, currently unable to drive and searching for work of course."
Life Elektrik:"How has having epilepsy affected your social life?"
Mandy:"It had made my group of close friends and loved ones dwindle, but for the best I would say. On the other hand, there is a much larger population of others with Disorders and such and social media and that's a whole world of love and support."
Life Elektrik:"What advice do you have for others living with epilepsy?"
Mandy:"YOU ARE NOT ALONE AND YOU ARE STRONGER THAN YOU THINK! Love and care for yourself, then others."

I am beyond blessed! Yeah, maybe I have Juvenile Myoclonic Epilepsy, but that hasn’t stopped me from living my dreams and life to the fullest. Having my first seizure at age 14, walking on the beach with my father, on a warm and sunny day. I vaguely remember all the tests that followed. Tests for many things, other than Epilepsy...  “Maybe she’s a diabetic! Maybe she’s anemic!” I remember being told,”You have Hypoglycemia.” Ok, big deal, so my glucose levels drop sometimes. That’s easy enough to control.

Then, it happened again at age 15.  I remember getting up in the middle of the night to get something to drink and waking up on the kitchen floor. My grandmother, hearing a “thud” in the kitchen, jumped from her bed to see what caused the noise. I awoke to her standing over me asking if I was OK.  My next seizure happened in front of my highschool classmates, as I attempted to donate blood in our school gym. I woke up to stares and confusion. (Not the best feeling as an insecure teenager.)

After the last episode, I was OK for a few years, and I only had an occassional episode of hypoglycemia but no seizures. That changed my freshman year of college. One morning, as I jumped out of the shower and walked to my closet to get dressed, I blacked out and hit the tile floor. Once again, waking up to my roommate’s confusion. She asked,”Are you dying?” Once the dizziness subsided and my vision cleared, I replied,”Yeah, I’m OK.” Then, I got dressed and went to class like everything was completely “normal.”

Finally, at age 25, during finals week - my senior year of college - I had a grand mal seizure, as I was getting up from the table, hitting my kitchen floor face first. When I woke up to - guess what (confusion) - my boyfriend (now husband) was looking over me with a terrified look on his face. “Baby, are you OK? What happened? Your eyes rolled to the back of your heard. Let me help you to bed.”   He made an appointment for me to see a neurologist the following day.  After an EEG, the doctor told me I have Juvenile Myoclonic Epilepsy and wrote a perscription for Lamictal.  That same week, I received a job offer on the opposite side of the country, to pursue my dream of becoming a designer.  I thought to myself,”I’ve lived 25 years not knowing I had Epilepsy, so why should I be afraid and live any differently now? This is my dream and everything I’ve been working towards. I’m going for it!” My boyfriend and I packed our bags and moved across the country in two weeks. My seizures seemed to be under control, and life was great!

About a year later, my boyfriend started noticing changes in my personality. I was very irritable and angry.  I felt different physically too... nausea, fatigue, memory loss, hair loss, lack of concentration, lack of interests in things I used to enjoy. I knew it had to be the medication. Additionally, I was laid off from my job a few months later, so I was no longer able to afford the medication at $500/month. I requested a starter pack of Lamictal from my Epileptologist and weaned myself off medication.

Since stopping my medication in 2009, I’ve made continuous lifestyle and dietary changes as a way to control my seizures. The Modified Atkins Diet was extremely beneficial, and I feel the best I ever have. I have a more positive outlook for my future. I am now 35 years old, working my dream job as a designer, and living a seizure free life!

Raise awareness! Wear purple! Empower others!

xo, Christalle Bodiford

Save

Save