10 Things I Wish I Knew Before My Epilepsy Diagnosis

I’m going to share what I’ve learned since being diagnosed with epilepsy in December of 2008.

I’d never faced any sort of health condition of any kind. I wasn’t living out the healthiest lifestyle, but as far as I knew I was doing all right. As far as epilepsy was concerned, I felt like I had nothing to worry about because there were no relatives to be found with the same condition.

It was time to hear the results from my doctor…

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After various tests and comparing new scans to scans from my first seizure at the age of 16 years old, my doctor sat both my husband and me down to say the words that felt like they had the power to slow time down. From the moment that you hear, “You have epilepsy,” it’s as if you’re a rock dropped into the ocean. You’re completely unsure of what’s going on and what to do.

These Are 10 Things I Wish I Knew Before I Was Diagnosed:

1. When you begin your journey with epilepsy you must be your own advocate.

It didn’t really occur to me that once you hear those words “You have epilepsy,” you’re confronted with a variety of opinions about how to journey ahead. In the beginning, I just wanted a doctor. Any doctor. I didn’t care who it was, I didn’t care what medicine they were planning to give me. I just wanted them to put an end to the condition, whatever it took. It gets to a point where the decision comes down to you and you alone. You must make the decision about your treatment.

Every type of epilepsy is different. This must be first and foremost in your thinking. Make a choice; just because it’s set up that way, does it mean it’s the right way for you?

I had to make a decision: Was I going to stay with a doctor who wasn’t leading me further to the care I needed? Was I going to continue taking epilepsy medicine that wasn’t controlling my seizures in any way, shape or form?

2. Epilepsy doesn’t define me.

I’m going to be completely honest: Having seizures, whether Grand Mal or Complex Partial (in my case) can be frustrating. Seizures are an unsettling experience for the person going through it and anyone witnessing it.

I choose to be open and vocal about my seizures rather than masking them because I know so many around the world are intimidated at the thought of others’ perceptions of epilepsy and seizures. I’ve gotta say, this knocks me back a few steps because truthfully what other choice do we have? Seizures are here with me, and we’re at war. But I have complete faith that one day there will be a cure for epilepsy. I know it in my heart. I will look upon this someday as a page turned in the story of my life. Epilepsy does not define who I am, and I will go on. I will be here for my husband and my family.

3. Be a fighter – this will help you through the stormy days.

This is a must. You’ve got to keep yourself in a positive, uplifted, healthy state of mind. I’m in a fighter state of mind right now and this means I’m making myself priority number one and believing with all of my heart I’m going to be just fine. This is critical.

I had my moments of crying when I was told I had epilepsy. It’s OK. We’re human. The important thing is that you get back up and you fight. Get yourself in the thought process that you will beat this. No matter what it takes, no matter how long it takes, you will beat this. Quit is not in my vocabulary.

4. Good nutrition plays an important role in facing epilepsy.

So many foods that we eat and drink are in fact poisonous to our health. I consumed junk food, processed and refined food for so long. I now have become a person who reads and studies labels. It’s become apparent how so many foods contain ingredients that may contribute to seizures and an unhealthy lifestyle.

Since becoming diagnosed with epilepsy, I’ve kicked most, if not all caffeine to the curb and re-evaluated my eating habits. Now a days, I eat a whole lot more vegetables, such as leafy greens, broccoli and cauliflower. I also include more fruits into my diet such as blueberries, apples and bananas. Re-evaluating my eating habits was tough in the beginning, as there were comfort foods that had to go; however, this was my life I was analyzing. In one hand, comfort. The other hand, my life. I choose life.*

5. Read your labels.

Artificial sweeteners are added to a lot of what we buy and consume. As I stood in the aisle at Walmart one day and looked at the boxes of oatmeal, I realized some contained artificial sweeteners. How frustrating. It’s important that you read your labels.

There’s a wonderful app I highly recommend called ShopWell. It scores foods on how well they meet your needs. It includes nutrition information and personalized food scores. ShopWell also gives you easy tools to find better products for you. It takes the work out of reading nutrition labels so you can focus on buying what you want as quickly as possible.

6. Epilepsy tests can be smooth sailing.

When you’re going through testing, it can be intimidating or boring but you learn to toughen up and just do it. I’ve had 28 electrodes placed upon my head more than once. This meant they were going to record seizure activity in my brain. Anyone having seizure testing should talk to their doctor or neurologist if they’re feeling nervous or anxious.

7. Talk to tour doctor before testing.

Nervous? Anxious? Talk to your doctor about any questions you may have prior to testing. He or she will gladly reassure you about any concerns. It’s important to address these concerns; you want to feel at ease when going in for testing. I remember the first test I was scheduled for, I was so nervous I could barely sleep the night before. It was as simple as picking up the phone and calling my doctor and voicing my concerns. I had nothing at all to worry about.

8. You are priority #1.

At times, epilepsy testing felt like an energy drain. It’s important to go into it with faith.  There was a day my husband looked at me and said, “Think of it as a punch to the jaw of epilepsy. Every test is a punch. You can do this! Stay strong.”

He continued by saying, “You’re not superwoman. Don’t forget to give yourself time to rest.” He was right. He was completely right. Rest is medicine too. Sometimes it takes a voice of reason for me to stop what I’m doing and rest because I’ll work sunrise to sunset. I needed to learn to quit taking on more than I could handle. This was something that was a bit of a challenge for me, but it was something I had to do.

9. Support is a must.

Don’t go to your appointments alone. If you’re able, ask a friend or family member if they will go with you. You don’t know it, but you do need someone there with you. I’ve found my greatest strength in my family and friends, and they’ve been such a tremendous blessing in my life. My husband has been to every single appointment.

I highly suggest keeping a journal and jotting down everything. Keep notes on all your neurologist says. Having references are important.

10. Hold on to hope.

Remember, however long it takes, whatever it takes, hold onto hope and faith. Be vigilant. Do all the necessary things you must do to stay healthy and remain healthy. You are priority number one.

*Editor’s Note: Please see a medical professional for your own nutrition recommendations.

This post originally appeared on The Epilepsy Journey.