Susan’s Story

“Hi Louise, I absolutely love your YouTube channel and just love how open and honest you are on your blog. I got diagnosed with epilepsy in April of 2016 after having undiagnosed myoclonic jerks for a while (I thought everyone got a little twitchy when they were overtired, lol) and in April I had a grand mal tonic clonic seizure in front of my husband. Thank God he had some training from previous employers of his and put me in the recovery position before calling for an ambulance.

Once the ambulance arrived, I could not find the strength to even sit up let alone walk to the ambulance. So I had to be carried up a flight of stairs and out to the waiting ambulance, which had to wake everyone else up in the neighborhood. As soon as the paramedics got me loaded in the ambulance and were talking to the hospital on the radio, I started getting sick. I needed a bin and was impressed with myself that I was able to tell the paramedic in the back with me before getting sick all over the back of the ambulance.

The trip to the hospital was a bit of a blur and then when we arrived, my husband had met us there, I requested the bin again, lol. They did numerous tests on me at the hospital and found that I was not suffering from extreme low blood sugar, I did not have a bleed in my brain nor a brain tumor, and thus instructed me to follow up with a neurologist and my primary care doctor.

I followed up with my primary care doctor and they really didn’t know what to do with me at the time other than the basic neurological checks. They then instructed me to locate a neurologist and speak with them. I called maybe about 90% of the neurologists in my area before I was able to get an appointment for the end of April. Once I met with my neurologist, he stated that I could wait and see if I had another seizure or I could go get an EEG. As I was understandably freaked out, I decided to go for the EEG.

I did not sleep the night before my EEG appointment, other than about two hours because of the anxiety. I then had to wait for my results. I found out from my follow-up neurologist appointment that I was found to have generalized epilepsy. My doctor then started me out with Topamax 25mg twice a day and I tried that for six months. At my six month follow-up I was exhausted and could not focus so my neurologist switched me to Keppra 500mg twice a day which made me feel better for like the first few days and then much worse. I was anxious and exhausted all the time; having panic attacks when going out in public. After one month of that, I decided that was enough and needed to try something new.

I am now on Trileptal 300mg twice a day and need to see my neurologist again on February 14th. Thankfully my husband and job has been amazing helping me to adjust. My friends are amazing as well, able to joke around with me when I start feeling down. They didn’t miss a beat when hearing about my diagnosis. They were right there and not nervous to be alone with me, scared that I’ll have a seizure. I think it helps that I educated them, and just about everyone else I know about what to do if I were to have another seizure. My husband also is my rock and will drive me everywhere if I ask him to. He listens to me vent when I’m having a bad day and sometimes just lets me lay down and rest while he strokes my hair (which is soooooo relaxing).

I’m hoping to get back to feeling more myself and find medication that works for me and won’t cause harm to the children that my husband and I want desperately to have, but watching your videos and reading your blog lets me know that I’m not alone and that everyone goes through the same things. So from the bottom of my heart, Thank you.”

It’s amazing to see many other epilepsy warriors come together to share their stories. A massive thank you to Susan for taking the step, and joining myself at Upon A Sunshine, and raising awareness of epilepsy. Follow Susan on Twitter here and she is also on Snapchat (sfogle89) and YouTube (Susan Fogle). Thanks again, Susan.