My Epilepsy Journey

My purpose for beginning my heartshare blog is two fold. First, I want to encourage those who struggle with chronic health conditions. I have several conditions but the one I am most affected by, is Epilepsy. I want to share my story from the beginning (what I know from others telling me). I hope that each reader can learn more about epilepsy and gain some hope that with God, all things are possible. He has a reason for all that we go through and has something we can gain and learn from each situation we face. Secondly, no matter what we deal with, God has a purpose and plan for each of us! God is able to do a miracle in each of our lives and use us for His glory!

The first seizure I vaguely remember having, was when I was 19. For those of you who are not familiar with epilepsy and/or seizures, Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures.( Epilepsy.com) For more information, please check out Epilepsy.com, a website formed through the Epilepsy Foundation. A seizure specifically is a sudden, uncontrolled electrical disturbance in the brain. It can cause changes in your behavior, movements or feelings, and in levels of consciousness. If you have two or more seizures or a tendency to have recurrent seizures, you have epilepsy. (Mayo Clinic).

I was 19, in Bible College and worked at a local post office. I was real hot one night, exhausted because my job was from 12-4 am and was a student. All I know was because I was told when I came out of my seizure, was that I fell with most of my coworkers watching and saw me shake. They left me alone until I was conscious again and told me that they believe that I had a seizure. I was brought into my supervisors office who yelled at me for working there with Epilepsy! He brought me back to the college and that was the end of it! I just went to bed and didn’t know anything more about what happened and didn’t think anything was really wrong, but a freak, one-time incident.

Later, I did ask family if they knew anything else of a history of past seizures or if anyone in my family had seizures. I was told that when I was real young like around 2-4 years old, I got real hot on a ride home and my family thought I may have had a seizure but didn’t know for sure. I also believe that during my grade school years, I had some as I often had blank stares, forgot information and looked like I was daydreaming. These are known as absence seizures.

Many years later, when I was married and had 3 children, my husband thought something odd was going on in the middle of the night. I would sit up in bed and cry out, squeeze and clench his hand. Soon after noticing this, I then started having some during the day that our young children could now see. I cried out, zoned out and sometimes lost my bladder with no idea that it was happening until I became conscious again.

During this period of time, my husband started his senior year of college, my father in law was just diagnosed with cancer and I had just begun a bachelor’s degree program in college as well.

My husband and I knew that I needed to go see a Neurologist to get some testing done. I had an EEG done as well as an MRI. A few weeks later, I went back for a follow up appointment at my Neurologist’s office and she diagnosed me with Epilepsy, noting that I had a scar on the left temporal lobe of my brain. It is believed that this was caused by having scarlet fever when I was young. I mainly have Complex Partial seizures but I have also had Gran Mal( Tonic Clonic) seizures as well.

I had trouble with certain aspects of my memory for many years . I had trouble understanding things and focusing as well at times. Many teachers felt this when I was growing up in school. I also had what I thought were just bad flashbacks but then learned were auras( warning signs of a seizure).

I’ve been on 8 medications now and have seen many doctors, mainly because of moving. I went through a period of 4 years when we lived in Orlando FL where I found an Epileptologist specifically who was able with one of my medications, to control my seizures. We moved to St Louis six years ago and had some bad side effects from the one medication that I was stable on. I had to try other medications since then.

I tried two doctors after moving to St Louis. My second doctor in St Louis two years ago (2017) prescribed me a medication that had to be closely monitored by bloodwork and follow up. At one point, she severely over prescribed one of my drugs and I ended up in the hospital 5 times. I had severe tremors and when I got out of the hospital, I was unable to walk and eat correctly for around 6 weeks. I also almost died a couple of times. When I went to the hospital the first of those 5 times, the ER had to call poison control because my levels were so severe. I had already set up an appointment with a new doctor, before I even went into the hospital. I did this because my doctor went overseas on vacation and left no one in her practice, able to regulate or see me for an appointment that I very desperately needed. A few weeks after I went to see my new Neurologist, during a 7 day EEG, he was able to get my tremors to stop and I was soon able to walk again! He put me on a new medication and I was doing quite well for several months.

One of my main triggers for seizures is emotional stress, then fatigue as well. I had a stressful year, in 2018 and I ended up having several more seizures. I did well for another 4 months then had another one. I’ve been placed on another medication, for which my Neurologist is trying to work with the best possible outcome.

I know that many patients have much more difficult seizures, much more often and tougher situations in their lives to deal with. I think the most important reason God has allowed me to have Epilepsy is to learn to be more sensitive, trust God and be thankful for what He has given me, then help by being a blessing, to understand what others are going through and encourage them. I know too, for those who take care of family members who have seizures, it is very difficult seeing them face seizures and live with them on a day by day basis. I recently wrote to someone who struggles because they fear death. I was able to share with them the hope I have in meeting my Savior some day! I have also encountered others who don’t believe there is a God because of their circumstances right now.

I often struggle with depression and anxiety as part of having epilepsy and due to side effects of my medications. As a result, I dont know sometimes, why God allows what He does, but I feel responsible to share what I believe and why I believe Him!

Thankfully, I am around six months seizure free again and I’m looking forward with hope, to see what God does next on this journey in my life.