Electrodes were hooked to my head. I was told to stare at a dot and blink as little as possible for 8 minutes. Less than a minute into it, the test was paused, and the tech began to ask me questions. He knew my basic history. But he started asking just about seizures. How long? What those? Duration? How does my head look? Etc?
He said that (paraphrasing, idea not exact info) three of the brain sections, Alpha, Delta, etc. were firing 50 times what they should, while one area was barely firing at all. He then added, "No wonder you are having so many complications." We adjusted continually and tried to get the best feedback reading possible.
When finished, I went back in with the doctor, where. Hayden had already begun testing. The doctor hooked me up to some additional wires and sat me in front of a computer. He told me to look at a dot, close my eyes and relax, just watching the waves come in and out of the beach. Two minutes into it, he kind of got frustrated with me. He said, "I'm not sure if that is the best you can because you are having more rapid eye movements than a four year old with ADHD."
Hmmm. My eyes are radio moving when shut. How do I stop it? So I actually tried head on hands, holding eyeballs still, to actually pinching my eyeballs shut. The reading was supposed to be less than 3% movement. The lowest mine ever got was 28%. So that test was a bust. They couldn't contain an appropriate result due to excessive eye movement.
So the dr moved me to another computer, still hooked with wires. This was to stare at a screen. Black screen with white dot in middle. Each time a white box is above the dot, click. Under, do nothing. Test lasted 2 minutes. Wow. What a relief that is over. I really wasn't feeling good. The doctor said, "great practice run. It will run for 27 minutes." Twenty-seven minutes? Are you kidding me? I don't feel good.
I continued to try, while wiggling in my seat, patting my foot, doing all I could to stay with the program. I started getting sicker. Then the room was spinning. Then, the room started shutting down. Spinning. Nausea overtook me. I was in a full on panic attack it felt like. So incredibly sick. I finally called to the doctor, with all the strength I could muster. "Sick. Going to vomit."
He rushed over, unhooked me and helped me while I stumbled and fell and tripped my way into the bathroom. Clumsily collapsing and knocking things off shelves while I tried grasping onto anything for support. After being sick and cold water on my head, I felt awful. I sat down and wanted to just collapse from exhaustion.
At some point, three doctors were with me. Asking. Questions. Talking.
They told me I had full blown epilepsy. During the first 8 minutes worth of testing, I had endured multiple seizures. While testing in back, many more seizures occurred. They said they needed to send my EEG and brain map to a specialist in Dallas. But from what they observed, I am having dozens to hundreds of seizures a day.
My mind raced. I thought of how exhausted I am. I thought of all the times I drop a thought or can't hold my place in a book, forget my sentence, loose my place and just freeze. All of those are seizures. Wow. My mind raced with thoughts.
Thomas was called as the doctor was terrified of what he had just witnessed. He said that in over 20 years in practice, he had never seen the number or severity or case of seizures as prominent as this. That I was in severe trouble. Thomas rushed to the office. Pleading with the Savior, the entire way that I would be ok. And figuring out how to get us to Dallas.
When Thomas got there, I was doing. Better. Seizures were calming down. So he went in with. Hayden for his testing so that it wouldn't trigger any more seizures in me.
The doctor sat and talked to me. He explained seizures. He explained medication and when appropriate etc. he said that hospitals and testing have deemed a certain point, that the side effects of seizure meds, were better than the damaged done by seizures. He said the tests are set to ignore all activity less than "need meds" amount. However, medicine is changing and they are retraining doctors to go with the new philosophy. Basically, many smaller seizures on a consistent basis can do just as much damage and frustration, as more severe, less often seizures.
This doctor in Dallas. He is a leading research specialist in this area. After explaining there was no way for. Thomas and I to just pick up and fly to Texas. I need clearance for medical. Work. Hayden. Where to stay. Etc. etc. instead, it was determined to send this doctor in Dallas all the results and see what he thinks.
I was relieved and felt safe with Thomas with me.
My mind flooded with this new found knowledge. Yet I hungered for more understanding, more help, more frustration.
So, as the plot thickens.... We are praying for more enlightenment, more understanding, more answers, more help, and more healing.
Answers come. Sometimes things must get worse before they get better.
Regardless, I am thankful to know that my Savior stands at the head of my care. He protects me, intervenes and watches out for me. I am so grateful to be wrapped in His loving arms of His care and protection. For my lifeguard walks in water. He can shield me from any storm and can rescue me from any fall.
I walked into the doctor office hoping for relief and more answers and healing. I came out with more questions and a greater desire for help to overcome these seizures. This new road has just begun.
Stay tuned...
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