My Broken Brain

March 8, 2022- 

Living with a broken brain sucks, especially when no one knows what's wrong. I've had migraines since 1988 and am under the care of several physicians. I had COVID-19 in January 2021. My experience with COVID was pretty mild. But there's a possibility that my broken brain could be caused by COVID, migraine, Fibromyalgia, or none of the above. The docs are stumped, as am I. They recommend I keep a journal, so here I am.

My symptoms that I find most troubling are brain fog. I've had brain fog for years- mostly from Fibro. But since COVID, it's gotten so much worse. Imagine, if you will, a cup of water with food coloring. Take a stirrer and gently swirl the color. That is how my brain feels. It just swirls. No one understands. It's not dizzy, it's not vertigo- although I have that too. I spent the better part of today in this state.

When it happens, it could be minutes, or hours. My computer literally shuts down... I can't think.. I can't comprehend. I know where I am. I know who I'm with. I know what I'm supposed to do. But I can't process. 

Today, I was explaining it to my PCP. Talking to her left me exhausted. I didn't have the heart to tell her it was happening as we spoke... Between the neurologist and the PCP, they want me to go on leave from work. Up until recently, this hasn't interefered with my patient care... until it did. 

On a cardiac arrest, I couldn't focus. I was blessed to have a strong team in place that took the lead and did the thing. All I had to do was push the buttons on the monitor when they told me to. Then the migraine hit.. Occipital area- ODD, usually they are right sided. 

I go see another neurologist at Duke on April 7th. Dr. Younis thinks maybe seizures. I also have some weird things in my brain... subependymoma gray matter heterotopia and a "mildly prominent perivascular space at the right parietal lobe". The Doc calls them "incidental findings and typically of no clinical significance". Meanwhile, I feel like I"m losing my mind.