Diagnosed at 45…Who Would Have Thought?
By Lori Griffith
My name is Lori, and I was diagnosed with right temporal focal unaware epilepsy at 45 years old.
It was first noticed when I started dating my husband. He knew something was off when my behavior would suddenly change. I would say things that didn’t make sense, pick at my clothes, and smack my lips. These episodes lasted less than a minute. He would Google my symptoms, but epilepsy never came up. Like me, he thought epilepsy meant falling to the ground and rigidly shaking.
As time went on, the episodes became more frequent. People at work began noticing, too. It wasn’t until my heart started pausing that everyone realized how serious things were. During my second EMU stay, my heart paused for 22 seconds. I was told I was at high risk for SUDEP, or Sudden Unexpected Death in Epilepsy. The next morning, I had a pacemaker implanted. During seizures, I would turn white as a ghost and my lips would turn blue. Suddenly, no one could dismiss them as simply “spacing out.”
After an EEG in the ER and a referral to a neurologist, the ball finally started rolling. After about a year of trying medication after medication, I learned that my epilepsy was refractory. The two medications I currently take have reduced my seizures from sometimes several a day to about 6–8 a month. My doctor believes the seizures are affecting my memory, so I was referred to Tampa General Hospital to see if I qualify for epilepsy surgery.
I am completely unaware when a seizure is happening. I don’t experience auras or déjà vu. The only indication I have is the confusion and exhaustion afterward. Then I ask whoever I’m with if I had a seizure. If I’m alone, I text my husband, “I think I had a seizure.”
He always replies, “If you think you did, then you probably did.”
He’s right.
So far, I’ve had five EMU stays, a WADA test, multiple MRIs, and a MEG scan. I have more testing ahead as doctors try to pinpoint exactly where in my right temporal lobe the seizures originate and determine whether ablation or another surgery is possible.
Sounds scary, doesn’t it?
But what I’ve learned through all of this is that I am incredibly blessed.
My employer continues to support me and keep me employed. During Epilepsy Awareness Month last November, my entire company held a fundraiser on my behalf and allowed me to choose the organization that would receive the proceeds. I chose JoshProvides.
I didn’t even know JoshProvides existed. I simply Googled local epilepsy foundations, and there it was. I now occasionally join the support group, where I’ve met some wonderful people. I don’t feel so alone anymore.
This season of my life has taught me about strength, faith, trust, humility, friendship, and love for myself and for others. Above all, it has brought me closer to God.
I have lost some independence. I have countless doctor appointments, and I’ve used PTO for hospital stays instead of vacations. There are plenty of things I could focus on. But I stopped asking God, “Why?” and started asking, “How do You want me to use this for Your good? How can I help someone else?”
No matter what we grow through in life, someone somewhere has already paved the way. We are never truly alone when we advocate for ourselves, love ourselves, and reach out for help.
I found JoshProvides.
And I’m grateful I did.
