The beauty of life is that anything can happen at any moment, and you can count on the journey to help you gain perspective and strength to deal with it. When I was 21 years old, I was officially diagnosed with generalized epilepsy. Epilepsy is a neurological disorder that causes abnormal activity in the brain, seizures, and loss of consciousness.
The seizures would start off slow. First, I'd feel very tired — both mentally and physically. Then, it would become hard for me to stay focused. I would be in and out, as if I was falling asleep and waking up. After those signs, I would have the seizure and lose consciousness. I also experienced memory loss and I can only remember the events before I had the seizure.
Sound intense? It is.
When I was diagnosed, I felt upset and even betrayed. I couldn't understand why this was happening to me or where these seizures were even coming from. I had no idea what epilepsy was at the time, all I knew was I was having seizure after seizure and it was stressful.
My first seizure happened in my bedroom. I was talking with a friend and getting ready to head out. I noticed I felt drained and completely out of it, I felt zombie-like as I was getting ready. Next thing I knew, I was laying on the floor with my mom and friend hovering over me and blood scattered around me. I didn't know what happened or where the blood came from, but I was too exhausted to figure it out.
After being sent to the ER and hearing my friend tell the story, I realized what happened. I realized that on my way to the bathroom, I began shaking (convulsing), then fell and hit my head on the end of the bed. I busted the top of my nose in between my eyes and needed six stitches due to the impact.
After a while, it became more intense and the seizures were happening way too frequently. I would have seizures on the train, at work, and at home. At that point, I knew I needed to seek out some serious medical attention.
I spent a year and a half trying to figure it out and go back to "normal." I went to different hospitals and tried an array of medications. Nothing worked. I wanted to give up. It seemed like the doctors didn't know how to help me. I was losing hope in the medical system and had a hard time adjusting to what my new life would entail. I felt hopeless and remembered that my mentor at the time used to suffer from seizures. When I reached out to her, she recommended I make an appointment at NYU's neurology center and I did. I'm so grateful for her to this day because that's when I finally received the proper treatment and tests.
I was officially diagnosed at NYU, but I also had to face the hard reality that this was never going away.
My doctor informed me that the chance of epilepsy going away as an adult was unlikely, but it can be maintained. She also informed me that the type of epilepsy I have can be triggered by hormonal changes, stress, and alcohol. So, if I wanted to start a family, I would need some medical assistance to make sure I can carry seizure-free. I was literally shook! Just when I started to get a little hope, it was taken away. As for alcohol, I cut back, but not completely at first. I had some wine and a beer here and there and stuck to things with low alcohol.
Fast-forward to life after my diagnosis, I was doing fine, I hadn't had a seizure but I was taking medication every day. The medication was bittersweet. While I didn't have any seizures, I wasn't eating either. I could hardly finish a meal and I lost a significant amount of weight. I would only eat one meal a day or drink nutriments. Although eating became a struggle, anything was better than the seizures, so I continued taking my meds and smoked some weed to gain an appetite. Unfortunately, my seizures didn't stop and I stopped taking my meds and looked into holistic treatments (which I don't encourage you to do without consulting with your doctor). I realized I had to make these lifestyle changes to live seizure-free:
Avoid Anything That Can Cause Hormonal Changes
I stay away from all birth control methods, emergency contraceptives, and anything that can affect my menstrual cycle. I also take folic acid daily as a preventative measure to lower the effects of any issues I may have during pregnancy.
I Had To Accept Epilepsy
I never really accepted epilepsy in my life. For a long time, I disassociated myself with it so much, especially in the beginning. I didn't identify with being "disabled," not that there's anything wrong with that, I just didn't feel that way. I didn't want to face it, I didn't want to understand it, and I certainly didn't want to live it. I was also younger and less mature at the time, which made it even harder. I noticed when I accepted it, I paid more attention to triggers and effects, I was able to do more research and became open to exploring ways of living with it.
Keep Stress Low
Like anxiety, too much stress can be a trigger. To keep my stress low, I try my hardest to:
- Meditate every day
- Practice time-management
- Exercise or do yoga
- Attend therapy when I can
Very Low Caffeine Intake
Anxiety is also another trigger and too much caffeine makes me very anxious. I avoid anything that may cause any additional anxiety to keep it safe. I don't drink soda and stick to decaf coffee.
I struggled big time with eating and because of that, my body wasn't getting the proper nutrients it needed. I make sure I'm having the necessary amount of carbs, protein, and vegetables to maintain a healthy diet and weight.
Alcohol was the biggest trigger and probably the hardest one to let go of. I didn't drink much but it was still something I enjoyed. I also felt very peer-pressured to drink. Every time people would invite me to hang out, the first line would be "let's grab a drink" and it became harder to deal with.
I also felt uncomfortable sharing that I don't drink, each response was either "how you don't drink?" "you don't drink at all?" or "why you don't drink?" I don't blame the people around me for their curiosity, but it was hard to deal with on top of everything else. I was very uncomfortable with having epilepsy, especially when it came to talking about it.
Eventually, I just removed myself from certain settings like bars and when people asked why I didn't drink, I just let them know it's not for me.
Since making these lifestyle changes, I've been seizure-free for a year *insert twerk*. If you have epilepsy, please consult your neurologist before making any lifestyle changes.
Featured image by Getty Images.
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