Things Aren't Always What They Seem: Hemiplegic Migraines

Yesterday, while I was reviewing a document at work things got weird. I couldn’t comprehend the words, and nothing was making sense. And then I could only see certain letters. Even though I have had too many hemiplegic migraines to count, it had been a while and I panicked – sure I was having a stroke. I quickly emailed my boss and left – I didn’t trust myself to find her and have a conversation because I knew the words wouldn’t form like they should. I just wanted to be alone – to avoid questions, concern or embarrassment.

On the way home – probably driving a little faster than I should – I realized if I got pulled over I would be in a bad situation. I would not be able to explain to the police officer what was happening and it would definitely be assumed I was drunk or on drugs. By this point the confusion was worse and I started to experience what I refer to as “kaleidoscope vision” where my sight is interrupted by circulating bright lights. I couldn’t remember common words and names I knew well seemed foreign to me. I know it is all part of the migraine and that it would end at some point but when you’re in the middle of it it’s horrifying and heartbreaking and hard to remember your brain will return to normal.

I think what threw me the most was this one went out of order. Usually they are by the book – first the kaleidoscope vision, then the numbness, tingling and heaviness from my face down my left arm and through my fingers. Then, in the worst case ones – like yesterday – the confusion and slurred speech starts. Usually all the symptoms – from the vision to the confusion – are done within an hour. Then I am sometimes left with a headache (other times I just have the symptoms but no actual head pain) and the post-migraine fog which often lasts 24 hours or more. But yesterday it took almost two hours to get through the symptoms – which tells me the recovery is going to much longer than 24 hours. Sometimes my brain isn’t back up to speed for a couple days. It is a terrible, hopeless feeling.

These migraines first started about 12 years ago – but I would only have them once a year. I’ve seen ebbs and flows since then including a huge increase during my pregnancy with Francesca and then after the birth of Amelia and Annabelle. Thankfully we have found a medication that seems to break the cycle when they are unrelenting. I discontinued the medication at the end of July and have been doing great…until yesterday. And yesterday was the reason I hate them more than anything now. In the days BK (before kids) I would go home and sleep for hours – usually most of the day and then overnight. These days, that isn’t an option. And when it happened yesterday I had the additional challenge of Chris covering a basketball game. Thankfully, my village came through – per usual. Our nanny, Jessica, stayed late with the twins and Grandpa and Grandma took Francesca overnight and dropped her off at school this morning.

But the guilt that comes with not being able to take care of my kids is awful. I don’t care how bad I feel, I don’t want to be away from them in my room sleeping it off, I don’t want someone else to have to take care of them. I am their mom - I should be able to handle it. And most things I can, but not hemiplegic migraines. They are my kryptonite. And if I’m being painfully honest - I fear that they are the one thing that could break me. Everything else I can figure out and overcome, but not these. With that said, that’s me in the middle of the migraine war - once I’m a couple days on the mend,  I’ll be back to kicking ass and believing I can overcome everything.

I’m not sure the point of sharing this, other than – things are not always what they seem. Anyone who would have seen me at work yesterday, or a police officer pulling me over on the way home, would have for sure thought I was drunk, high or having a stroke. Thankfully it was “just” a migraine (she says with a laugh). I’m feeling better today but it will likely be a few days before I feel 100%, until then I will be tired (again, mother of 8-month-old twins, laughs), I will take longer to find the right words and I’ll be near tears often, because these stupid migraines leave me terrified and on edge about when the next one will come. I’m also sharing because I’m working hard on reaching out when I need help and not defaulting to my mom (this is where she’ll object, and say its fine – but it’s not). So – all of you who have continuously offered to help be warned – I might be coming for you. XO

Update: before I could even publish this or share it, I had another migraine. Thankfully, Chris is in town and can take on the parenting duties tonight. I’m at home, laying down and waiting for a return call from my migraine doctor.