I’m frozen. A living statue for the tenth time today.
If I can just make a noise, any noise, I might get his attention. His eyes are glued to the TV and my feet are glued to the floor. I focus intently on trying to move my hand from the light switch, after a few minutes I’m able to wiggle my fingers just enough that they slip off the switch and my arm falls blissfully to my side - sweet relief. Less frozen now, I manage to slide my feet a few steps into the hallway past the wall that’s separating us. Just a little bit further and he will see me.
Aaaand I’m frozen again.
All he needs to do is notice that I’m gone. Why doesn’t he realize I’m not there? WHY DOESN’T HE LOVE ME? Why am I so dramatic? Come on, turn your freaking head. It’s not hard. NOTICE ME. One minute passes…3 minutes pass….it feels like 10 thousand pass but only 7 more actually do before I get out a grunt and Charley turns his head.
I used to call these freezy moments “episodes”. My nephew Jace started calling them freeze attacks which is cuter so I adopted the term. My speech is always the first to go. My brain feels completely disconnected from my body. I get slower and slower like I’m running out of batteries then suddenly, I’m left frozen. I know what I want to do and say but my body won’t cooperate.
The freeze attacks first appeared when I was 16. My parents brought me to the doctor where I was asked countless times if I had done drugs (I hadn’t). After multiple doctors and tests, the consensus was that I had “complex migraines”. I was put on a medication called Topamax and the episodes went away. I was happy to have the episodes dealt with but the migraine diagnosis never sounded right to me. Since the medicine worked I stopped asking questions but it always felt like an unsolved mystery.
Insiders refer to Topamax as “stupamax” as it causes terrible brain fog and effs with memory recall. It’s an awful but necessary evil. Between having a spotty memory and wanting to have a baby (tmax is high risk for birth defects), it made sense to ditch the meds. I went off of Tmax in 2016 and had my son Crosby in 2018, no problemos.
Two months ago I was laying on the couch with a 10 month old Crosby crawling on me. My husband Charley was in the room looking in the fridge. He asked me a question that I knew the answer to. I tried to respond, but I couldn't. He asked me again. Silence. He looked over at me and knew something was off. He took our son and tried talking to me again. When he saw that I wasn't able to speak he realized I was having one of my mysterious "episodes" I had told him about.
That night I had several freeze attacks which lasted up to 40 minutes at a time. The next day I went to the walk in clinic and asked to be put back on the dreaded Topamax. I figured it would be a quick fix since it had worked so well in the past. After explaining my history I was put back on, no questions asked. Two days later I was still constantly freezing and went back to the walk in. I had an episode during my visit and the doctor recommended I go to the ER to get a CT scan just to be sure it wasn't something more serious. My CT and MRI were both clear so I was sent home with a referral to a headache specialist. It took about a week for my referral to go through. When I was finally able to call for an appointment there was miraculously a cancellation for that same day and I was able to get right in.
I was not excited to go to the headache specialist. I have given my history to many doctors and am always met with the same looks of skepticism and confusion. They make me feel like I’m faking it. Having to explain the same story over and over always made me feel crazy.
But this time was different.
After giving my usual spiel to the headache specialist he asked a lot of questions and reviewed every note and appointment on record related to my freezing. I wasn’t used to someone going into such detail. After hearing that I was having over 30 episodes a day he said “this isn’t a migraine”. He thought it could be a seizure and referred me to an epilepsy clinic. I was surprised when he suggested seizures, previous doctors were quick to dismiss this possibility because I don’t lose consciousness and the episodes last so long.
Feeling hopeful, I made an appointment with the epilepsy neurologist. She was warm, understanding, and listened without the suspicious look I was accustomed to seeing. Instead of going through my entire spiel I simply explained my recent symptoms and she knew exactly what I was talking about. She told me I had focal epilepsy and the ”episodes” were seizures.
I was so happy to have epilepsy.
Well, I was happy to know that I have epilepsy anyway. It was unusual and wonderful to feel understood.
I had an EEG done a few weeks ago and it showed slower brain activity in my left temporal lobe and my diagnosis was changed to temporal lobe epilepsy. Don’t worry, I’ll give you a rundown on the various types of epilepsy in a future post.
So, how am I doing now?
I have good days where I feel almost normal and others where I get overwhelmingly sad and frustrated with being so out of control of my body. I had a nice two week stretch with no seizures, but I started having them again a few days ago. On these days I lay in bed all day and try to rest as much as possible. If I talk for too long or move around too much I end up freezing.
I am working with my neurologist on figuring out the right dose of medication. I recently switched off of topamax and am trying out a medicine with fewer side effects (shoutout to lamictal!). My neurologist is optimistic that we will be able to get this under control.
And that, my friends, is my abridged epilepsy origin story. If you made it this far, give yourself a pat on the back and accept this *virtual high five*!
If you know someone with epilepsy, send them my way. It is lonely and hard to live in fear, unsure when the next seizure will strike. But like so many things in life, it is easier to get through when we are open, honest, and do it together.