So what comes next?
Well there was a doctor, a neurologist. He was local, from the hospital that we used. He was on our insurance. He was the one who was supposed to fix me. He was my exorcist.
The first appointment was amazing.
Nothing was really answered in definite terms. But as my mom and I sat in the little room, I read the posters on the wall.
Do you ever experience …
1. feelings of Déjà vu
Check
2. loss of vision or blurring
Check
3. tingling feelings
Check
4. profuse sweating
Check
5. dizziness
Check
6. racing heartbeat
Check
7. lightheadedness
Check
8. blackouts
Check
9. severe headaches
Check
10. an overwhelming fear
Check
If you answered yes to one or all of these you may be experiencing epileptic seizures.
Please see a doctor immediately.
Check, well kinda.
I was so excited!
Mom! Mom! Every one of those, that’s what I feel. That’s what it is. I have seizures; we are in the right place. We’ve got it! I felt like I had found the buried treasure, this was medical. Doctors fix stuff, I’d be fine. My demon would be gone in no time. See ya later sucker.
And, the doctor seemed to agree…well kinda. He believed what I “say” I experienced sounded like seizure activity. He could not say for sure due to no actual proof.
You see, I didn’t mention the fact that the ER nurses never actually got me hooked up to anything, at all, ever during my multiple seizures that night in the ER. They watched them happen, though I don’t think there was ever a detailed report given to anyone, certainly not to me.
So, we would do tests. Find out for sure, see what was going on.
The doctor gave us some details. Seizure disorders are more common then I realized, that there were medications that could control the episodes, that most people get their medication set and only come back to the doctor for a yearly check up, that many people just grow out of them.
This didn’t sound bad, barely even an issue.
All I had to do was get through the tests and then I’d know why. I’d know what. I’d know if it was a tumor crushing my skull or a scar in my brain, or whatever else caused this weird brain activity.
Tests.
Then I’d know the facts.
I was naïve and positive, or maybe just hopeful. Desperate is probably the best word. I was desperate.
So we did the tests. I laid there, still in claustrophobic tunnels. I stared at flashing lights. I slept. I didn’t sleep. I had nasty goop in my hair. Electrodes stuck across my head, my chest. I was tested.
My parents and their insurance companies paid a lot of money for a lot of big beeping machines to test me. For nurses to hook me up, and aids to monitor. For doctors to read and diagnose.
I passed! Or, as I saw it, I failed.
The tests were all clear. Clean. Nothing. Nada.
Which in epilepsy terms apparently meant I was just likethat vast majority of people that have seizures. No body knows a damn reason why my brain went nuts.
I didn’t even get to officially have seizures. I had presumed “seizures.”
Which pissed me off.
Presumed. Like maybe I was lying. Like maybe I acted like a crazy person for fun. Like maybe the little demon who consumed my body was my imaginary friend.
Okay, as a grown up I do know that presumed is more of a legal term and was never meant to offend (though occasionally I do think these doctors mean to offend…more on that later).
But it did feel like a kick in the gut. It felt like my demon chuckled, can’t catch me.
The plus side? They still treat you for presumed “seizure”disorders. So it was medication time. Yay, well maybe.
In my case, not yay.
But that is for another day.
Below I have a list compiled from Epilepsy.com. I’m posting it because I think it helps to actually read a list like this. It is broken down into categories (beginning, middle, and end seizure activity) which I will explain more later.
I’ll place a star by the ones on the list I typically experience with my episodes…never mind. I literally just started almost every single one. The few that I didn’t star I’m not sure about since someone else would have had to observe me to tell me what I was doing, since almost all of my seizures have occurred in private I don’t know everything that I do or have done during an episode.
Early seizure symptoms (warnings)
Sensory/Thought:
Emotional:
Physical:
No warning:
Seizure symptoms
Sensory/Thought:
Emotional:
Physical:
After-seizure symptoms (post-ictal)
Thought:
Emotional:
Physical:
Source: https://www.epilepsy.com/101/ep101_symptom
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