10 Things I Wish I Knew Before My Epilepsy Diagnosis


We are two days away from kicking off Purple Day 2015! Recognizing survivors, supporting those currently battling epilepsy, remembering loved ones we’ve lost all around the world and educating everyone about this condition that over 65 million face right now.

I am going to share what I have 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 of a lifestyle but as far as I knew I was doing alright. 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 as I.

It was time to hear the results from my doctor…

After various tests and comparing scans to scans from my very first seizure at the age of 16 years old, my doctor sat both my husband and I down to say the words that feel like they have the power to slow time down ever so slow. From the very moment that you hear those words “You have epilepsy,” it’s as if you’re a rock dropped into the ocean. Completely unsure of what is 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 you aught 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.

There are over 20 types of seizures and 40 types of epilepsy. 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 that I needed? Was I going to continue taking epilepsy medicine that was not controlling my seizures in any way, shape or form?

2. Epilepsy Does Not 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 certainly.

I choose to be open and vocal about my seizures rather than masking them because I know there are so many around the world who are intimidated at the thought of others’ perception 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 are 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’ve got myself in a fighter state of mind right now and this means, making yourself priority number one and believing with all of your heart you’re going to be just fine. This is critical.

I had my moments of crying when I was told I had epilepsy. It’s okay! 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 A Very Important Role In Battling Epilepsy

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

Since becoming diagnosed with epilepsy, I have 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 just about everything we buy and consume. As I stood in the aisle at Walmart one day and looked at most of the boxes of oatmeal, most of them contained artificial sweeteners. How frustrating. It’s important that you read your labels! I have recently begun to do this with my husband as we have both realized it is super important to know what you are consuming.

There is a wonderful App that I highly recommend called ShopWell. ShopWell is an app that 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 that you can focus on buying what you want as quickly as possible.

6. Epilepsy Tests Can Be Smooth Sailing

When you’re having to go 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 are feeling nervous or anxious.

7. Talk To Your 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 as you want to feel at ease when going in for testing. I remember the very 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 that my husband looked at me and said to me “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 will 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 that 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 to your appointments. You don’t know it but you do need someone there with you. I have found my greatest strength in my family and my friends and they have been such a tremendous blessing in my life. My husband has been to every single appointment that I have gone to.

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

10. Never Stop Fighting

Remember, however long it takes, whatever it takes, never stop fighting. Hold onto hope and faith for dear life. You will overcome this. You will win this fight. But never ever ever stop fighting. Be vigilant. Do all the necessary things you must do to stay healthy and remain healthy. You are priority number one.

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

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