Today is an important day.
This is long. But it is a glance into a piece of my life that I’ve kept pretty quiet.
5 1/2 years ago, I “came to” as my mom put Max to me, so I could nurse him. My dad and Shane seemed frantic waiting for me to talk. I was confused and scared. I had just fallen asleep and now I’m awake and hear:
My mom: “Leslie!! Baby, Are you ok?!”
Me: “I think so. What’s wrong?”
Shane: “You just had a seizure. It woke me up so I came to get your parents.” (we were staying in their house)
Me: “NO I DIDN’T!!!”
Mom: “You did, baby.”
Dad: “We’re going to the hospital.”
Out the door we went.
Looking back, I believe I was having these seizures in my sleep since middle school. I slept alone, so no one would’ve know… Not even me. I haven’t had a convulsive seizure in my sleep in a couple of years. After seeing three doctors, we were able to control those with medicine. An EEG was never able to catch a seizure while connected to me. We thought I just had non-Epileptic seizures (that’s a thing).
2 1/2 years ago I started having very strange Deja vu-like feelings. After the episodes, I felt confused and paranoid. It was like my mind went to war and then snapped back to reality and I was exhausted.
There is no way for me to describe it besides anxiety, panic and paranoia… Complete mental torture for 30-90 seconds. It feels like a lifetime. I’m conscience and can speak in conversations, but my brain is not the same. I’ve been told that my eyes look “empty.” It wears my body and mind out. I avoided that the idea related to seizures.
After about the 1st month of mental Hell, I saw my doctor. Once again. We didn’t catch it with the EEG again. I was put on more medicine.
I began having 25 a month. One day I had 16 within 12 hours. I thought my brain was trying to kill my body. I considered the idea that I would rather die than feel the way that I did.
My babies keep me going.
In March, Shane was able to video me having one of these seizures. In June, I was able to have an extensive stay at Ocshner hospital in New Orleans, with a new doctor. I was video monitored with an EEG/EKG for 3 days. 5-6 seizures later, it was confirmed… Epilepsy!
Finally! It was so relieving to have a diagnosis. Localized simple partial/partial seizures is what I have been tortured with for over 2 years now. After many tests, doctors were able to detect the exact location on my brain causing the seizures. Over time the seizures have actually made the right side of my brain shrink.
I’m on 3-4 medicines twice a day and currently take 77 pills per week. The MG for 7 days adds up to 9,800. This isn’t even a very high dose.
I recently had a conference with several doctors who are certain that a brain surgery would be successful to remove the useless piece of tissue on my brain. After a lot of studying and research, I have chosen another route to have my epilepsy controlled.
Vagus nerve stimulation (VNS) implant. It is lower risk and can potentially help control my seizures enough to reduce the amount of medicine I take over time. I still have an option of brain surgery and I’m considering it for a later date. The VNS implant is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain by way of the vagus nerve.
The device is sometimes called a “pacemaker for the brain.” It will be placed under the skin on my chest wall and a wire will run from it to the vagus nerve in the left side of my neck.
The vagus nerve is part of the automatic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
I have studied every detail of every type of seizure that the brain releases. I’m hopeful that the surgery will be a success and will increase day to day quality of life for me. That way I can be the best me for my family!
I encourage you all to read about ALL seizures. Not just convulsions that are seen on TV.
Today is the day for surgery! I’m ready!