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EEG for Staring Spells

2/12/2024-2/13/2024

By Rene PetersPublished 2 months ago 5 min read
7
Me during EEG hookup

I know I look miserable in the picture but this ordeal has been a disaster. Plus, it was like 6 pm... I was tired and hungry.

The beginning of the shit show was... Yikes...

It started as a fairly normal EEG, getting the call to schedule it. When it was first scheduled, I was supposed to come in on February 8th. They called and there were no beds. So, we tried again on February 9th. Same thing. They don't do admissions on the weekends so the 10th and 11th were automatically off limits. Then, February 12th, I was told by admissions that they had a discharge and I would be able to get in.

I got to the hospital and followed the instructions of going to the information desk and telling them what unit I was being a direct admit to. That means admission without going to the emergency department first. (I googled it so I knew what I was being told to say.)

I got there at about 2:40, a little before 3 like I was told. The information desk woman called up to where I was scheduled to go and then told me, after getting off the phone, that a discharge fell through and there still wasn't a bed for me. They almost made me go back home to try again on February 13th. I sat in the hospital lobby trying to figure out a way home after talking to the admissions woman over the phone. Eventually, I got a call from the unit's phone number. It was her again. They made it so I was in a semi-private room. All of the rooms are either private or semi-private. She told me to follow to the red elevators and meet her on floor five, so I did.

I told her that in those several days, I spent a long time crying. Apparently she heard it in my voice during our most recent call. She explained that the hospital is short on beds due to respiratory illnesses being so bad. They had a room that was being cleaned but not a bed. If it came down to it, they were going to use a stretcher. On the fifth floor, I did my intake questions and basic neurological exam with one doctor. Then, he went and got the other two doctors. The three of them came back. One asked, "What's your understanding of why you're here?"

I responded with, "I've been having staring spells and we are trying to figure out if they are epileptic or non-epileptic."

"Perfect, that's my understanding too."

We went over the plan of how we were going to try to catch them on the EEG but it seemed very difficult. I can't push the button if I don't know it's going to happen or that it just did. The goal was for someone to come up so they could push the button for me if it happened mid-sentence. (Spoiler: that never happened.)

After waiting about two hours, I finally got the call to go back up. Then I finally got hooked up to the electrodes, where I asked a lot of questions about the EEG leads. I asked what the numbers meant for each lead since I knew the letter was which lobe it goes on. For example, F1... I knew it was frontal but not what the number meant. Even numbers go on the right and odd on the left. They go in numerical order from front to back on their respective sides. So, the example of F1 is on the left side of my forehead in the picture I used as a featured image.

After they finished hooking me up, the nurses got the bed into the room and I laid there, knowing I'd be bored out of my mind and have these staring spells but not knowing how I'd mark them with the button. I had no way to be told when they happened.

Later that night, the nurse was in the room doing the final admission questions and one happened. Apparently he asked a question and since I didn't respond, he pushed the button that notifies nurses of a seizure and marks it on the EEG to make reviewing easier for the doctors. With a machine that logs stuff one second at a time, they need the extra help for reviewing by having markers.

In the morning, one of the three doctors came in with the news I was worried about... There were no abnormalities from my standard brain waves. That's means these staring spells are another form of PNEA. I can't handle my emotions so my body is altering how they are physically expressed.

A little while later, all three doctors came in with more details for me. While they were talking to me, I had another. They marked it on the EEG and while the nurses were coming to the room, they told them I was fine and they were just marking it to review it. They explained what my actions were as I was coming out of it. I mentioned that it started to end and I suddenly got hot so that was why I grabbed the water. One of them thought I was still out of it while grabbing the water.

Since they saw it in person and reviewed what they saw on the EEG from that one as well, they had enough data to determine these these events have definitely been PNEA.

A little while later, I spoke to the neuropsychologist, as all epilepsy patients are required to, and we came up with a plan. I found out he is my therapist's supervisor and he asked if I gave him permission for them to talk so he could help with a plan moving forward. Of course, I said yes. I want these figured out so they will go away. I learned that I had been experiencing the placebo effect for a couple weeks. I would swipe my VNS magnet and it seemed like the spells stopped. My brain was just playing tricks on me though.

An hour after we got off the zoom call, the EEG technician came in to unhook the electrodes. I was excited to get them off. They were itchy but scratching your head messes up the readings. I looked like this...

Me after EEG removal

The nurse brought the discharge paperwork and I figured out a way home. My mom got me rather than me waiting for an hour for a ride.

I was so excited, despite my fear of the shower, to get baby oil that I drenched parts of my head with out and glue off. I couldn't get it all though. When I woke up today, I was still pulling glue out of my hair.

I don't like the results but at least now I know how to treat it... Continuing intensive therapy.

therapymedicinedisordercoping
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About the Creator

Rene Peters

I write what I know, usually in the form of poetry. I tend to lean towards mental health, epilepsy, and loss/grieving.

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Comments (3)

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  • Hannah Moore2 months ago

    Ah, this sounds like such a tough journey.

  • Stephanie Hoogstad2 months ago

    I’m glad that you finally found out what was going on, but I’m sorry that you had to go through so much to get there and that it wasn’t what you wanted to hear. Dharrsheena is right, though, you are very strong!

  • I'm just so glad you're open to figure out what's wrong and to get the proper treatment for it. Some people wouldn't even do that. You're so strong!

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