Seizure control is something that took awhile for me to achieve. Almost 6 years to be exact. I knew identifying my triggers were important. I knew taking my medication was important as well. What I didn’t realize was that it would take so much more than that. My doctor (who I love), never really talked to me about other outside factors that could possibly still cause breakthrough seizures. Let me tell you how I went from 15+ seizures a month to 1 to 0.
In 2013, I was diagnosed for the second time with epilepsy. This time the diagnosis of Temporal Lobe Epilepsy, also known as TLE. Temporal lobe seizures begin in the temporal lobes of your brain, which process emotions and are important for short-term memory (https://www.mayoclinic.org). I had no clue how this would affect my life as I knew it. I didn’t know it would come with horrible side effects from medication. I often felt as if it was more worth it to have the seizure than to deal with the drama of medication trials and errors. My doctor gave me no grace after my first visit. I thought I would have some time to get over the shock of my seizures returning after they were dormant for over 17 years. But nope, I was immediately placed on Keppra, a well known seizure medication. He then hit me with “I’m removing all driving privileges.” Yes! I was 27 years old being told I can no longer drive. My license was taken. My indenpence as I knew it was gone. It took about a week for me to notice the changes in my body though. For someone who can’t sleep past 7am, I was sleeping until noon. I had plenty of rage fits, unable to handle my emotions. Then the big one, I started to loose my hair. If having seizures weren’t enough to deal with. I was literally losing myself in the process.
Even though I was on 1000mg of Keppra, I was still having seizures. Not as frequent or intense as before but still seizures. My doctor decided to increase my meds to 2000mg. Later on, a second was added. Topamax. At this point I was taking 2300mgs of seizure medications A DAY! To combat the increased side effects, I needed to do some research. I added vitamins to my daily cocktail of meds. Vitamins C and D and Biotin. All which helped me on my journey back to a “normal” life with epilepsy.
It was time for me to change my focus. After each seizure I kept a log of what was happening prior to the seizure. These logs helped me to identify my seizure triggers. My triggers include lack of sleep, too much sleep, changes in the weather such as quick pressure drops, certain foods like fresh apples and aspartame, stress, my hormones and of course heat. Living in Texas, that heat trigger is super hard to escape but I manage. Once I identified my triggers, I took immediate action. Working with my doctor and providing my seizure diary, we were able to take steps to get me to a better place. At this point I was down to 5 seizures a month.
5 seizures a month, okay progress. But I was sure I could do more. The seizures that were triggered by my hormones were difficult to tackle. As a woman, during our menstrual cycles, our body is trying to do a million and one things at once. It’s like clockwork, seizure when it starts, seizure when it is. Birth control didn’t help to regulate, hormone replacement didn’t work. Nothing seemed to help. After tons of research and taking it to my neurologist and primary doctor, we decided to do the Ketogenic Diet. Yep, I did keto for about 6 months. With that came weight loss which also helped. The ketogenic diet has helped people with epilepsy wayyyy before it was mainstream. Incorporating the diet and transitioning to natural products to remove the aluminum that my body was absorbing has helped tremendously. I now use natural toothpaste, deodorant, soap and lotions.
Now as I write this today, I have about 1 seizure a month and sometimes zero. My doctor has reduced my medication to 300mg and I’m completely off of Keppra. I went from seeing my neurologist every three months, to every 6 months and now once a year or if anything changes and breakthroughs become more frequent. I know everyone’s story is different and things that worked for me, may not work for the next person. It’s so important that you keep a journal, take note of whats happening to your body and relay that back to your doctor. Never forget that self-care is the best care. It will be up to you. The meds can’t do it all, the doctors can’t do it all. You have to cultivate the freedom you desire.