What Epilepsy Means to Me: Lori Smith

I’m thrilled Lori contacted me to tell her story.  Her epilepsy story is a little different than others because she wasn’t diagnosed as a child or in her teens but in her forties.  What I love about Lori’s story is how easily she accepts her epilepsy as just another part of herself and how she encourages others to do the same.  What also delights me is Lori used to volunteer as a clown!  Her alter-ego “Flitter” would volunteer at her church ministry creating balloon animals for children and, no doubt, passing out smiles.

 

Robert’s Sister:  When were you first diagnosed with epilepsy?  Was it a lengthy process to get diagnosed?

Lori Smith

I was diagnosed in my early 40’s, and yes it was a lengthy process.  My aura appears to be heart related (palpitations) and I thought I was having a heart attack.  After a stress test, and being sent to a cardiologist, he suggested I see a neurologist.  My neurologist said it was probably complex migraines, and sent me to a neurosurgeon to find out more about some benign cysts I had in my temple.  The neurosurgeon also thought they were complex migraines, but suggested a 72-hour EEG to rule out epilepsy.  It was discovered that I was having constant simple partial seizures.

Robert’s Sister:  How did you feel when you were diagnosed?

I thought I was going crazy.  I smelled things that no one else did, I sometimes heard things that no one else heard, and occasionally saw things that changed.  Once on a drive with my husband, I “saw” a construction trailer jump out into the road.  I gasped, but when I blinked, it was back where it was supposed to be.  I was also having absence seizures, where I would lose 15-30 seconds of time.  I thought my DVR was jumping ahead, but I was watching live TV.  I would continue my knitting, which would throw off the pattern I was doing, as I would only do straight knitting instead of the pattern for that 15-30 seconds.


Robert’s Sister:  Did your family treat you differently after the diagnosis?  If so, how?  

My mother-in-law refused to call it epilepsy.  She insisted that a seizure disorder is different than epilepsy.  She refused to believe that stress could bring it out at the age of 40-something.  She refused to believe that the stress SHE put on me while we were living together had anything to do with it. She considered a seizure disorder as something temporary, not a life-long battle.

Robert’s Sister:  What treatments have you tried?   What has worked?  What hasn’t worked? 

I was started on Topamax.  It made me lose a lot of weight, but gave me brain fog.  Then I switched to Depakote, but it made me gain a lot of weight very quickly.  It also gave me brain fog.  I am now on Keppra, which seems to be working well except during tornado season, when I’m a human barometer.

Robert’s Sister:  Do you think the medications affect how you feel?

Not currently.

Robert’s Sister:   How has epilepsy affected your life?

It does limit my activities somewhat.  I can no longer drive outside of my comfort zone.  Concentrating on directions makes me get the aura.  I don’t want to take the chance.  I can only drive at night in well-lit areas and where I am very familiar, because headlights on a dark road also give me an aura.

Robert’s Sister:  What is your favorite memory? 

Camping with my grandparents.

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

Not really, it’s who I am.  Everyone has labels.  I’m also a mother, cancer survivor, veteran, etc.  I have a handicapped child (Down Syndrome and Autism) and a gifted child with ADHD.  We’re all labeled to some extent.

Robert’s Sister:  What do you want people to know about epilepsy?

I may have limitations, but I know them.  If I say I can or can’t do something, trust me.  Don’t pressure me to do more or inhibit me from doing what I know I can.

Robert’s Sister:  Thank you, Lori, for sharing your epilepsy story!

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.