The return of my broken brain

My broken brain is back. 

After starting the year with a hemiplegic migraine, I had been enjoying life migraine free. And then August happened…well the last week of July. 

I’ve had 21 migraines in two months. 

And still I was managing. Until Thursday. I was at work and had a confusional migraine. I text Chris and made it out without drawing attention to myself – but I was sobbing. 

If you’ve been friends with me for a while you might remember these from a couple years ago. They started in October of 2022. I had been having frequent migraines. We had just found out about my mom’s cancer and started treatment. My stress was high, so I wasn’t surprised about the migraines. My regular migraines are complex on their best day. I get bright lights that block my vision, while I rarely have an actual headache I will have brain fog, terrible fatigue and trouble with my vision for a day or two. The worse/longer the lights are, the longer the recovery period. They can be debilitating. And no matter how often I have them, they are scary. Especially the ones that mimic stroke symptoms (hemiplegic.)

And then one night in 2022 I forgot everything I was supposed to know. Or at least everything from the recent past up to that moment. After another one a couple months later I went by ambulance to the hospital. At this point we were referring to them as “amnesia episodes.” Due to my epilepsy history (I’ve had two brain surgeries but have been seizure free since 2008 ) and explanation of the episodes (the episode had passed by the time I talked to a doctor in the ER), they put me on Keppra (an epilepsy med I had been on years ago) and referred me to a neurologist. 

After a couple more episodes, a normal (for me) MRI and a normal 48 hour EEG, the neurologist confirmed what I already thought. He didn’t think they were seizures but possibly a rare migraine called confusional migraines. 

Around this same time I was also seeing a neuro ophthalmologist to try and figure out why I was having double vision episodes and dizzy spells. A blood test indicated I could have myasthenia gravis – a pretty devastating condition. I went for a second opinion to a neuromuscular doctor in Grand Rapids. He did a physical exam and ordered additional bloodwork. After the results came back, he didn’t seem convinced about the diagnosis – at least the bloodwork wasn’t backing it up. But some of the other symptoms I was experiencing could support it…or they could be associated with my already diagnosed autoimmune (Sjogren’s). 

So back to the migraines. The confusional migraines stopped in February 2023. And while I had my usual migraines, life went back to mostly normal. And then in February 2024 they returned. I braced for the worst but only had two. And then they were gone again. 

During the rest of 2024 I would have clusters of migraines but then they would go away. The double vision and dizzy spells mostly stopped. 

I’ll add that after stress my biggest trigger seems to be weather. Years ago (when I was having babies) there were definitely some hormonal links but that hasn’t been the case for years. So I was pretty surprised when my migraines stayed mostly under control during the end of my mom’s battle with cancer. 

And like I said, the end of July happened and then after having the confusional one at work on Thursday, I had another one on Friday. To say I was devastated would put it mildly. I cried for two days. I’m finally feeling better about it today. 

These migraines don’t just impact me for a day or two. They disrupt my whole life. They make me afraid to leave the house. Afraid to take my children anywhere. Cause me to take time off work. I’m not dependable. For anyone. Because I could lose my mind any freakin second. I just can’t do this again. 

When I come out of these migraines it takes time for me realize a lot of basic info – where the kids are, where Chris is, if I still have seizures, etc. The worst confusional migraine I had was when I was at gymnastics for Francesca and had to remember that my mom had cancer. It was awful. And then Thursday something similar happened. As I was coming out of the migraine I wrote down “confusional migraine” and then “mom cancer? Dead. Dad assisted living.” It is awful. Now with a couple day buffer the bluntness of it makes me giggle, but having to remember your mom is dead is not a good time, as you can imagine. 

We have to get it figured out. 

I know they always go away – but when? And for how long? 

So, I started doing some google searching this weekend. And I pulled out the flip chart and started documenting dates and symptoms trying to connect some dots. 

What I found was something called basilar migraine. The double vision and dizziness made it seem reasonable. And when I was plotting everything out I realized the double vision comes within a few days of the confusional migraines – which makes me question the myasthenia gravis diagnosis altogether- maybe it’s all migraine related. Whether it’s the confusional or basilar or something else. 

I have a regularly scheduled appointment with my neuro eye doctor on Friday so I plan on taking some info and asking some questions. Until then I’ll probably be staying close to home this week – or letting someone else do the driving. I hate that. 

The life of a medical mishap is not easy. Sometimes it feels like a bit of spiritual warfare. I know my non-Christian friends might think that sounds like crazy talk, and that’s okay. The thing is – every time I feel like I’m getting my typically hot mess express life on track – something medical seems to happen to throw me off. To question my abilities. To make my attempt at a healthier lifestyle more difficult. To put my faith on the back burner. 

Whether I’m feeling confident about managing the girls medical challenges, appointments and travel. Or getting back to going to church in person more regularly or trying to figure out my next move for my career. 

Turns out there is nothing like forgetting everything you know – even for just a few minutes – to question everything you think you know. 

I can’t control what happens with these migraines. And while I feel like I can’t control the fear that comes with them, I know I can try to better manage it. So that is where I’m going to spend my time. I’m reminded of the line from “Oh My Soul” by Casting Crowns. “There’s a place where fear has to face the God you know.” This situation is in His hands. My life is in His hands. So instead of living in fear and despair I will work harder to recognize when I’m headed in that direction and give it up to God.