Keto Stories - Victoria

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It is hard to accurately explain to most people that there are multiple types of seizures. When someone thinks of a seizure, they are generally thinking about a grand mal seizure where convulsing and unconsciousness occur. Yet what they don’t realize or think about is HOW HARD IT IS TO HAVE EPILEPSY…


It is HARD to go to an emergency room where the nurse asks you your reason for being there and you tell them that you’re having seizures. Yet you are laying or sitting up in the bed and able to have a conversation with them, so they look at you like you’re crazy and ask you when they happened and you must tell them “right now.” Then to ease the tension you try to make a joke about your list of current medications and how you’re a walking pharmacy.

It is HARD to have such constant and rapid neurological discharges going off (every minute) that you have insomnia. Yet the sleep deprivation could quite literally kill you, along with drinking alcohol, being stressed out, bright flashing lights and rollercoaster rides; amongst other outside forces that could trigger that “big one”.

It is HARD to grow up and never find out why you have epilepsy. Only to have a world-renowned neurosurgeon tell you, at the age of 30, that your specific epilepsy is congenital (after you’ve had two children). That your siblings would exhibit the same neural activity and discharges as you on an EEG (electroencephalogram), yet you’re the lucky one to have had it activated by a stressor.

It is HARD to have to teach your children what to do if you have a seizure and show them where your emergency medication is since you do have one. To see the fear on their faces and tears in their eyes after you’ve had a grand mal seizure in front of them. To have to hug them tight and reassure them that you’re fine when you regain consciousness, while being scared and shook emotionally yourself.

It is HARD to be the only person in your family to have epilepsy. To explain that the way you feel and the migraines you get daily are not made up, not an excuse to be lazy and not a cop out from family interactions or activities. That you really do feel that dizzy, nauseated, or tired. That those lights really are that bright and the pain you’re feeling is real. To try to get them to understand the internal prison you live in every second of the day, why you’re terrified about how quickly your memory is failing, why you’ve lost those jobs and why that year of driving restrictions flipped your world upside down as well, all while stealing your independence.

HAVING EPILEPSY IS HARD!!!

 

Yet admitting defeat of your lifelong battle is even harder. It becomes the driving force of a “watch me” mentality when people tell you something can’t be done. It heightens your determination because you don’t look at yourself as having a significant disability and not needing a hand to hold. It makes you an advocate for other “silent killer” conditions. A voice to help explain that just because there is a possible lack of exterior signs/symptoms, that it doesn’t mean the complaint isn’t real. It means that even though every day is hard, you are a fighter who has survived 100% of the good and bad days so far.

I am a survivor, a warrior, a voice.

 

I HAVE EPILEPSY

I can remember brief “clips” of my childhood before I started having active seizures. Not long, drawn out scenes or anything, but thank goodness there are home videos for that. When I was 10-years old, I had the flu. My family and I had been invited to a church Sunday school event at my parent’s friend’s house. My mom was hesitant at letting me go because I had been feeling so awful, however this day I didn’t have a fever any longer (it had been high) and seemed to have my energy back. It was a hot, Florida, August day and we all went swimming, on jet skis and a boat on the river and even went fishing. We were all exhausted and ready to go home. My dad was reeling in his final catch and it ended up being a stingray. Growing up in Florida, he was experienced with them and how to get a hook out of their mouths. Well, he ended up getting stuck in the arm by the barb of the stingray and had to go to the hospital. While my mom took him, a family friend took my sister (the oldest), my brother (the middle) and I home. Hours later my parents came home and my fever had spiked again and was very high.

I can remember walking out of my parent’s bedroom where we had been watching t.v. to greet my parents. My mom met me in their bedroom doorway and noticed that I was making sharp jerking motions with my arm, my head kept turning to the right with my eyes rolling and I was having trouble speaking (I was conscious at the time). As a nurse of almost 20 years at the time, she recognized that I was having seizures. So back to the hospital my parents went with me in tow. A few minutes after leaving the house I stopped showing any signs of a seizure, so my parents turned the car around to take me back home, although they were hesitant. As soon as they did and began to drive, I started having the same jerking arm movements so they decided to just go ahead and take me to the emergency room. That day changed my life.

I began going to a pediatric neurologist and was prescribed Depakote, which in my opinion is the worst medication in the world! I was terrified of needles and I had to begin getting monthly lab work done to make sure my medication levels were correct for my age and body composition. My Depakote kept having to be adjusted thanks to puberty and all I could do was sleep. I was tired ALL THE TIME. My neurologist told me that the medication would either make me gain weight or lose a ton of hair. Well, of course since I have more hair than a Greek Goddess, I began to gain weight. It truly was awful and my neurologist refused to switch my medication. I can’t tell you how many times I’ve had a CT scan, MRI, EEG, etc. I’ve truly lost count. The migraines came right along with the seizures, which seemed to come right along with my period each month.

In May 1993, I had my first grand mal seizure. I was 12. Then in April and May of 1995 I had another one each month. For both I was 14. I took my Depakote everyday as prescribed and they kept increasing the dose. I kept having slight observable seizure activity like my eyes “fluttering”, jerking my arms every now and then, losing train of thought while I was talking, etc. Little things that you wouldn’t know were seizure activity. When I was 21, my Depakote level was up to 2,500 mg a day. I hadn’t had a grand mal seizure in 7 years so I figured I was outgrowing my epilepsy. (The fact that I hated my medication so much influenced my thought process.) So as the highly intelligent 21-year old that I was, I completely stopped taking my medication. I know…crazy, right?! By the grace of God, I did not have another grand mal. I thought it was the best thing ever! No medication, no lab work (which coincided with me not seeing a neurologist), no worries. I went to college, gave birth to two beautiful children and all was well.

In June 2009, I was going to lunch with my mom and my 4-year old daughter. The last thing I remember is turning around to turn on a DVD for her in my mom’s SUV. The next thing I was aware of was not being able to see anything, but I could hear 2 male voices saying, “We’ve got to get her clothes off” and my pants beginning to come down. I started fighting them and screaming “NO” as loud as possible. That’s when my mom grabbed my face, turned my head towards hers and repeatedly said, “Vicki look at me. You had a seizure, we’re in the hospital. Remember? Look at me.” I kept telling her no I didn’t. My vision finally came back to me (always the last sense to come back for me after a grand mal) and I was now looking at her and telling her no as she kept repeating herself. She finally said, “Yes you did. You had a seizure. Remember how we went and picked up Kiyarra from her dad’s house and were going to lunch after church? Well you had a really big grand mal seizure and we’re at the hospital.” The moment she mentioned my daughter’s name reality sunk back in. I started crying and said, “Oh my God mom, where’s Kiyarra?!” My daughter got up out of the chair she was sitting in in the ER room and came over to me, took my hand and said, “Don’t cry mommy. I’m right here. I’m ok. Nana told me that you get sick like this sometimes and then she must bring you to the doctor. I’m fine. I’m going to keep coloring.” With that she kissed my hand and went back to her chair to keep coloring. She was FOUR. That was the worst grand mal I had ever had because it was in front of her. Thankfully she was young enough to not remember it. “The men” were nurses who had to change my clothing because I had lost control of my bodily functions. I was 28-years old.

Fast forward to now, April 2018, and I have since had an absent seizure that mimicked a grand mal seizure (wasn’t classified as one because I was still able to hear), an absent seizure that lasted 38 hours, two grand mal seizures within 4 hours of each other that landed me in the hospital for 4 days and with a concussion and another one six-months later, right as I was getting my license back to drive again. I saw a neurosurgeon to see if I was eligible for the Vagus Nerve Stimulator, found out my epilepsy was genetic, lost multiple jobs due to my epilepsy and have a hard time remembering most things.

What I can’t tell you is that I had a bad childhood, adolescence, or life. Having epilepsy is something that is just a part of me, like the color of my eyes or the bones in my body. I don’t remember how it was to live without it. I don’t know how, but I just owned it as a child because I couldn’t change it and therefore I was never embarrassed of it. I’m certain this has a lot to do with my parents providing me with information and talking to me regarding my epilepsy, although I do not remember this either. I also have never had an issue telling someone that I have epilepsy or talking about it. I would rather them know and be informed, instead of being scared and not knowing what to do. This is just how God made me and I accepted that a long time ago.

How did you found out about the Ketogenic Diet?

I remember one of my numerous doctors telling my mom about the ketogenic diet when I was a kid and how it might really help me. In the back of my mind all I kept thinking was how was lettuce and water going to help my seizures? (I was a child and just focusing on the word “diet”.) I refused and she never asked, so I never followed it. Now, looking back, I wish I would’ve began the ketogenic diet as a child. I’m certain that my life would’ve been entirely different growing up.

How did ketogenic diet therapy change your life? What does your future look like?

My best friend convinced me to do the ketogenic diet in October 2017 as a weight loss tool with her. Her selling point to me was how good it is supposed to be for epilepsy. I explained to her that I had been told about it growing up but I just never did it. I can’t begin to thank her enough for that convincing conversation in October. Not only have I lost weight, but my migraines have decreased in strength and frequency (they have never been controlled through other therapies), I sleep better, I have more energy, I don’t feel as stressed and the list goes on! The most significant points though are the positive changes in sleep and stress, as they are my #1 and #2 triggers for grand mal seizures.

I will never go back to a different way of eating or lifestyle now. I pray that the long-term benefits will include coming off the sixteen different medications that I am prescribed, an increase in memory retention and a cessation of my epilepsy altogether. What a glorious day that would be! The ketogenic diet has truly given me my life back and I feel like I won’t just struggle through it anymore. Most importantly, it has given me hope.

I came across the Charlie Foundation through a fundraiser. In the description of the fundraiser it spoke about epilepsy and how the Charlie Foundation has been a huge influence in the community through research and education. That day I read every word on the website. It just added fuel to my fire for epilepsy awareness. The passion that I carry around every day for it was increased exponentially and truthfully, I didn’t even know that was possible.

Author

Dawn Martenz

A self-taught keto chef and mom to Charlotte who has been on variations of ketogenic diet therapy for over 10 years for Davet's Syndrome. She's authored 2 ketogenic cookbooks and features new recipes monthly on CharlieFoundation.org.

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