Before I start with the where and when, I should also note that my specific type of seizure is not a common one. Mine are classified as: Absance Seizures. Essentially that means that I stay conscious but lose my alertness completely. I could be having a conversation with someone and stop mid sentence and not realize it for several seconds.
Ordinarily, something like that is known as a Petit Mal seizure, and it only happens once or twice and the person is back to normal. What makes mine so uniquely rare, is that when I’m in the throes of my seizures, they will actually recur throughout the day usually getting worse (more frequent), and nowadays, if I don’t take something to counteract them, there is now the potential for a grand mal to occur.
I started having these ‘episodes’ when I was in 3rd grade about once a month. Like usual, no one knew what was happening and naturally, the thought was I was acting out. My teacher even asked my mom if I was on drugs.
I continued to have seizures for almost 2 years undiagnosed. My parents thought they were aphasic migraines but I wasn’t in any pain. My mom even thought that they were somehow related to diet way back then, but it was never pursued by the docs.
Finally, my mom had to take me to the doctors office during a seizure and demand that I have an EEG and an MRI. Diagnosis: Epilepsy.
I was put on my first batch of medication called Zarontin at that point. It was successful in a sense that it spread my seizures out to once every 8 or nine months instead of every month. The only problem was that when I did have a seizure, the severity was much worse.
After 2 years or so taking Zarontin, my neurologist along with my mother, made the decision for me to switch to a new medication called Depakote. I have mixed feeling in general with this medication. On one hand, it worked like a charm. Seizure free for 6 years. On the other hand, there were serious side effects to deal with. The two biggest were weight gain, and muted emotions. Since Depakote is also used to treat bipolar disorder, I was fortunate enough to receive the emotional numbing sensation that went with it.
I graduated high school and my neurologist determined that I had a 75% chance of outgrowing my seizures. I didn’t. I feel I should say that during the trial period of no meds, I didn’t take care of my self in the least. I still didn’t drink alcohol but I smoked a lot and ate the diet that your typical 18 year old would. 3 months after being medication free, I had another seizure.
My doc was hopeful that a different medication would work this time since I was feeling better and wasn’t gaining weight anymore. He put me on Lamictal. This stuff didn’t work in the least. I was away for college at this point (still not eating healthy at all) and I was having breakout seizures every 2 months. My doc kept increasing the medication thinking that since I was on such a low dose, that would be the problem. It wasn’t. I still would get a seizure every couple months but with the extra bonus of nasty skin rashes and horrendous double vision.
I decided to go back to Depakote because I knew it at least worked and I had school to attend. I went seizure free immediately. However, I gained 40lbs in a month and I kept that on for about 7 years. Of course that was made worse by the college diet of pizza, about 6 sodas per day on average since I wasn’t drinking any alcohol and smoking a pack to a pack and a half per day.
After a couple years, I decided to try and take a different medication. I researched one that was supposed to affect the brain in the same way as Depakote, but without the weight gain (weight loss is actually a side effect) or the mental numbness. It was called Zonegran. One major side effect it has other than weight loss and irritability (I got both) was kidney stones. Being the young 21 year old that I was, I didn’t think that could ever happen. I got them with a vengeance. Luckily (maybe) my body started to expel my kidney stones before they got too big so I was able to pass them. I say luckily because I didn’t have health insurance and there was no way I could afford any other way. My diet still was the same as ever so it’s really no wonder why I got them to begin with. Only, I didn’t learn from my mistake of drinking soda and zero water along with stress, lack of sleep and smoking. I kept up my old habits and had kidney stones two more times.
At that point, I decided to go back on Depakote because I knew it worked well to control my seizures. My kidney stones went away and I quit drinking any soda whatsoever. I think that alone enabled me to maintain weight instead of gain it. But the mental numbness came back. My diet didn’t change at all other than no more soda.
That continued for another couple of years until I discovered CrossFit in early 2009. I started doing the workouts and quit smoking the first month. But I was still of the mentality that I could eat whatever I wanted and as long as I was doing this ‘magic’ thing called CrossFit, I would get healthy. Didn’t work that way. While I initially lost about 5lbs, I couldn’t lose anymore despite how much I trained. I decided to tinker with my diet and since CrossFit was all about the Zone at that time, I gave it a shot. I weighed and measured my food for about 3 months but I ate whatever I wanted. Bread, cheese, milk, almost no veggies and some fruit usually post workout. While my performance actually did increase a fair amount, my mental status, body composition and health really did not.
In mid January of 2010, my gym, DogTown CrossFit started a 40 day strict paleo challenge. Since Zone wasn’t working for me, I jumped in head first. After the first two weeks of wanting to punch a baby for a slice of pizza, eating paleo was a breeze. My whole family was and continues to be very supportive of my paleo diet. In those 40 days, I lost 28lbs. I went from 228 down to an even 200. I hadn’t been that light in a decade. I also have been able to cut my medication in half since starting paleo because my mind is much clearer and I sleep better. I also have much less stress and I’m genuinely happier.
Regrettably, I didn’t get before and after blood work done but I did get to compare my bloodwork from my neurologist a few months later to the year before and my triglycerides went down and my bp is back to the healthy range.
As of now, I have maintained my Paleo way of eating for 2 1/2 years. I’ve been in regular contact with several people that are much more knowledgeable than I about epilepsy, nutritional therapy, sleep improvement etc. I’m hopeful that if I can dial in more and more variables, I can control my epilepsy sans medication.