I spent Sunday evening through about five p.m. Tuesday at the Neurotrauma ICU at Providence Saint Peter’s Hospital after having a major seizure which I don’t remember. I’m hearing that word has been getting out (which is fine, this isn’t a secret), so I want to share what is happening to me.
I actually don’t have any memory of Sunday when Alec found me standing frozen gripping the plastic case of a thermometer in the start of it in our bathroom until sometime Tuesday when I was finally responsive and able to talk with Alec and the staff and take a walk in the hall with a nurse before they let me come home.
I’ve known I have epilepsy since I had my first major seizure in 1999, so this is not a total shock, but it is close to one because this is the biggest seizure I’ve ever had. I had 11 seizures between 1999 and 2002 that were big enough to know that was what was happening and sometimes put me in the emergency room for a few hours. At that point I realized that I have probably been having petit mal seizures since I was a kid but nobody recognized them as that. I was just a sometimes spacey kid who (my mother claimed) didn’t try hard enough to live up to my ‘potentials’.
The diagnosis on the hospital’s discharge paperwork was ‘Status Epilepticus Due to Complex Partial Seizure’ and I looked it up and found some good information here https://www.nidirect.gov.uk/conditions/epilepsy which in part includes:
“Complex partial seizures are when you lose your sense of awareness and can’t remember what happened after the seizure has passed.
“Status epilepticus is the name for any seizure that lasts longer than 30 minutes or a series of seizures where the person does not regain consciousness in between for longer than 30 minutes. This is a medical emergency and requires treatment as soon as possible.”
I was so exhausted on Wednesday morning that when I took a bath (which felt great) I wasn’t strong enough to pull myself out of the bathtub without Alec bringing in a stool and two pillows for me to lift myself up onto in stages. But I did get out. And since then I have gotten stronger every day, and clearer-headed. I think I’m back to ‘normal’ whatever that is.
Alec and I see my neurologist on Monday and my primary doctor on Tuesday, and I hope that will mean we get more information about what the hospital records can tell us. In the meantime it’s scary but I’m okay considering, and I just want my family and friends to know what I’m dealing with. But I don’t need anything in particular.
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There are some other posts I’ve written about my epilepsy on this blog. If you want to read them, search in the upper right corner for seizure or epilepsy.
Waiting and watching. Thank you for your own words on this challenge. You are surrounded by a huge dedicated fanbase beyond the loving family we know you have. We will help out and love you and Alec day by day.
Yes, So sorry to hear but glad you are getting care and have your wonderful man at your side. Please keep me in the loop and stay me know anything I can do. Willing to donate $$ to help you.❤️? Connie
Hugs to you, Gabi. That is so scary and stressful. We are thinking of you!
Thanks for sharing this Gabi. There are no words in my vocabulary –
Glad you’re home and glad that Alec is there with you.
My Love to you both