Saturday, August 22, 2015

The Epilepsy Saga

 I spent a week at Mayo hospital in Scottsdale at the beginning of this month doing an epilepsy study.

The tech made me smile

Jillian had Lowell bring over pictures from
home so I would be more comfortable.
And they brought me cards and flowers!
Me and my baby girl!
They hooked me up to 32 sensors on my head and more on my chest, had me monitored 24/7, made me wear a seat belt in bed and tried to stimulate a seizure. I went off my medication a couple days before going in the hospital and haven't taken any more since. They attempted to re-create the shower while I was there as well as sleep-depriving me and using the flashing lights and hyperventilation. Nothing was successful. They even sent me home on Friday to wear the contraption at home to see if I could have a seizure in the comfort of my home.
Sunday morning I went back to the hospital to have everything removed. Sunday afternoon, I had a seizure. The positive, at least, was that Lowell and Chloe video taped my seizure and that it didn't happen while I was in the shower so at least I'm fully clothed. The negative, of course, being that it wasn't captured on the EEG. They are going to re-do the test in a couple months. I'm praying that life will be less stressful at that point so that I might be able to actually have a seizure while monitored in the hospital.
 While there, they also had me meet with a forensic psychologist to test my memory issues and had me do a tilt-table study to look at my heart and blood-pressure. The goal of the tilt-table test was to have me on the table for at least 40 minutes, then given me medication and then put me back on there for about another 20 minutes. I only lasted 22 minutes total before my pulse dropped to 30 and I passed out. Not a seizure, but a "cardiac event". This is being reviewed by the cardiologist.
The memory test was 4 hours of asking me questions, telling me stories and showing me pictures and then trying to get me to recall details. It was exhausting and I still haven't gotten the results of either test. :(

Lowell made a little cap for Chloe to mimic my own 'do
I'm so thankful for having good insurance coverage and being able to even do the test. The bills I just got in the mail indicated that my hospital stay was about $12,000 a day. Currently, I'm praying for some sort of resolution and answers so that we can get my seizures under control and get my memory back! I know my seizures are scary for my family but the most frustrating part for me is the problems with my memory. It affects my job, my family, my feelings of confidence and even my stress level. Just prayers that the whole thing that be resolved miraculously but thankful for God's provisions in the meantime.


Anonymous said...

Thinking of you and hoping for the best

Anonymous said...

Sorry, I forgot to sign that...

We're thinking of you and wishing you all the best.