A week ago I was doing the dreaded task of sorting mail. I rarely ever check the mail so it ends up being a chore. In it was a bill for my co-pay for an MRI I had done a few months ago. I was still having breakthrough seizures and my neurologist wanted to do a few more tests since the EEG was coming back clear. If you never had or heard of either one I’ll explain both.
Electroencephalogram (EEG) is a procedure that uses small flat metal discs that attach to your scalp to detect brain activity. It can also capture activity in your sleep. It then transmit as wavy lines on an EEG recording. The discs attach to your scalp by using EEG glue/adhesive. This gel helps keep the discs in place during testing. Magnetic Resonance Imaging (MRI) is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. In the head, a MRI can look for tumors, an aneurysm, bleeding, nerve injury and numerous other problems.
As a child I remember getting excited about my EEG. Why? Because it meant I had to stay up late. I didn’t understand I had a serious disorder, I was under 8 years old. It required them to attach at least 50 wires to my head in order to capture a seizure. And of course you had to be asleep. Every time I remember going into the room the nurse would hook me up to all the wires lay me down, my mom would be right there and I closed my eyes. I don’t know if she stayed in there now that I think of it. I did just get scared lol like wait a minute did she leave me all alone while I was sleep? But I do know once I opened my eyes she was always right there. I know I hated getting that glue washed and combed out of my hair ugh.
Fast forward to 2013. It had been about 20 years since my last EEG wow times have changed and mannnn I feel old saying that! My neuro order one & to my surprise I didn’t have to be asleep! Say what?! When the EEG tech took me in the room, she showed me now it’s gel not white chunky paste! I’m thinking YES!! It’s going to be so much easier to get out of my hair! Um yea I was wrong crap still was stuck in my hair!
During the test they talk to you, have you do certain things. WAIT is the point of the test to make you have a seizure?! What’s the deal with the strobe light? Yes there’s a segment of the test, it’s completely dark, eyes are closed and they turn on a flashing light. My heart was racing the entire time the flashing light was going off. This EEG came back normal. I still believe my heavy dose of meds caused that but hey I’m no doctor.
Couple months later my neuro ordered an Ambulatory EEG. This type of EEG you can move around with. It lasted for 72 hours. I was hooked to the wires and they were inserted into this device which was inserted into a pouch. Then sent home. It tracked my seizures awake and asleep. The nurse said oh it’s ok to do normal activities just keep a journal and write down when you sleep, eat, and press the button if you have a seizure. All data was being transmitted to her computer at the office. I can’t tell you how many times I almost choked myself by getting tangled. I am super clumsy! I didn’t leave my house the entire weekend especially because you can’t shower smh! The nurse came Sunday night to unhook everything and that was it. Of course no seizures the whole weekend. Then the time came to get the stinking glue out of my hair. This stuff is pretty close to getting gum stuck in your hair. No matter how many times you wash it feels like it is just always there. The fact that I am allergic to everything makes it worse. The thicker your hair is, the harder it is to get out.
Here are a few pics from that weekend:
Ok I’m convinced that whoever invented the MRI was buried alive at some point. God and I had a nice chat for the 25 minutes I was in there which felt like an hour. You hear a knocking noise the entire time, arms and legs wrapped tight. If you do have any problems they give you something to make you fall asleep no biggie. Thank goodness for the inventors of the open MRI now! The MRI did give us some feedback. We are controlling these temporal lobe seizures better.
That sums up what goes on in the life of an epileptic. We go through these tests to find what’s going on in the brain. I am so thankful for health insurance, the Ambulatory EEG alone was $4000 and my out-of-pocket was nowhere near that. Never take your good health for granted. I wouldn’t wish disabilities on my worst enemy.
With Love,
Whit
I do dislike that gummy stuff! I takes forever to get out of the scalp. If she ever has me do the reg outside of office, maybe I will purposely drive, put that movie, Super 8 on, over work myself just to see if I have an episode. Those are the things that gave me an episode recently. Thank you for sharing your story. You are very brave to show your pics also. Love you bunches, lisa
Always make sure you don’t over work yourself Lisa! Set a cutoff time for work..working a 7 to 4 shift at the office then coming home running two businesses wears me out but I have to remember to take it easy 🙂 too many seizure related deaths with sleep deprivation so be aware of the signals of your body saying IM TIRED..kick back drink some tea and take it all in.. Love ya to pieces..thanks for all of your support..don’t make me come to Austin and force you to have a day at the spa! Lol
Whit