Broken Brain Update: Stop me if you’ve heard this before…

In September of last year my regular migraines and confusional migraines increased and by the end of the year they were both out of control. After having one while at work in Jackson, I sent a desperate message to my doctor about a referral to Cleveland Clinic. Not because they have a confusional migraine specialist, but they are known for their headache clinic so it seemed like as promising of a place as any. And I was coming undone.

Tuesday, April 28 was my long awaited appointment. Dawn went with me and we went down the night before (and stopped to see Harper’s lacrosse game on the way – in a city I’ll never remember but there were dragons involved – and I had to restrain myself from stuffing a cowbell down a man’s esophagus). But I digress…

The appointment – which started with a doctor in the neurology/headache department – resulted in a 5 night stay booked at their Epilepsy Monitoring Unit in June. I guess you could say that appointment didn’t go as expected.

But the more time passes, the less surprised I am. And the more I realize how quickly I forget that we started this journey 3 1/2 years ago thinking they were seizures. So, let me back up…

I went in with a five page document that covered the confusional migraines – how they started (and stopped and started and stopped) and have increased in frequency – as well as my regular migraines. I also talked about my other health conditions and the myasthenia gravis diagnosis that one doc thinks I have and one doesn’t.

But back to the migraines – I feel like they are always hard to explain because I very rarely actually have head pain. That’s true of my ocular/complex migraines (which are my typical migraines) and the confusional migraines.

When the confusional migraines first started (back when I was just calling them confusional episodes) I did have headaches sometimes but they followed the episode, which is significant, I learned at the appointment. Typically with confusional migraines they start with a headache and the confusion follows, which was never the case for me. The more you know…

Anyway, I explained that after the confusional episodes started and I went to the ER for one, they did treat them as possible seizures, giving me Keppra and referring me to an epilepsy doc in Grand Rapids.

The epilepsy doc scheduled an EEG which came back normal. We did  a longer, at home EEG which also come back normal, but didn’t capture any of the episodes. After a few more episodes that I did have a headache with, he said he didn’t think I was having seizures but likely confusional migraines, which is how the diagnosis came to be. (He also came to this conclusion by reading medical journals, I believe, and finding cases that sounded similar to my experiences.) We stopped the Keppra and I stopped seeing him, because one less doctor appointment? Yes, please.

And then I start to beat myself up with all the “ifs” – if I had just kept a standing 6 month appointment with him, maybe we would have figured it out sooner. But then I look at the dates on the white papers adorning my office walls and I remember that they stopped for months – a year even – so it isn’t like I’ve had these for 3 1/2 years straight and have just been suffering in silence and not doing anything about them. They started in Oct of 2022 and I had seven episodes and then they stopped for an entire year. Then I had two and they stopped for another year and a half. Then they started back up in September of 2025 and have been relentless the last 18 months.

So, back to Cleveland Clinic. He couldn’t believe the Grand Rapids epilepsy doctor said they were migraines and not seizures. And after taking a few things into consideration including my seizure history, the fact that I have not been having any actual headaches with these confusion episodes and there was never any EEG  recording captured to officially rule out seizures, the headache doctor did not feel comfortable treating me before I was evaluated by the epilepsy team. CRAP.

After describing a typical episode, his theory is that the snippets of recent dreams that come before I get confused is likely the seizure and then the confusion that follows is the “postictal” state of the seizure which is often a period of confusion after a seizure before you return to your normal state after a seizure.

I do feel the need to defend the Grand Rapids doctor on two points. I think he did the best with the info that he had, and if I had kept seeing him he might have come to the same conclusion, or had me come in to the monitoring unit. The episodes I was having in 2023, when these started, were different. They didn’t all have the dream snippets that I get with nearly every episode now, and I did have headaches more often.

But with the way I describe the current episodes I totally get why the doctor at Cleveland Clinic feels the way he does. Especially when these dream snippets are exactly like the episode I had back in 2007/2008 before my second brain surgery when I had the bubble (aka as cyst) and we always considered that a seizure.

And I cannot deny in my confused state with these episodes, my brain sometimes associates them with my epilepsy past.

The first episode I had in 2022- during my confusion, I asked Chris if I had amnesia before and some other related questions and then just kept saying I didn’t have time for another brain surgery. And in a more recent one, in a note I took during it I typed, “I don’t think I still have seizures but this feels like that.” So yeah. The writing was literally on the wall…or in my notes app.

While the quick pivot from migraines to seizures felt like a punch in the gut, it probably shouldn’t have. And the more time that passes it really feels pretty obvious. So, he sent me out to the receptionist desk with the hopes of scheduling with the epilepsy department. Best case would be same day but we might have to travel an hour or more. I called over to Dawners, who was in the waiting room, to say a quick prayer. The receptionist started to look at the schedule and was getting frustrated and then said “11 o’clock! On the 5th floor.” It was in the same building, three floors up in one hour. I said “Thank you, Jesus.” And she said “speaking of” and opens her drawer and hands me a little Jesus figurine that says “God Bless You”.  Okay Lord, we see you. And you too, mama. We knew you were with us. She had made that evident when I opened my phone on the way that morning and her face was staring back at me from my screen. ❤️😭

So, we grabbed something to eat and then I went for my second appointment of the day. The doctor was lovely and of course had lots of questions about my epilepsy history and the current episodes. It was pretty clear that she too thinks these are seizures. She asked if I wanted to start on a seizure medication. I declined until after the monitoring unit stay (still holding out a little hope I guess, but also one of the meds I’m on for the migraines is a seizure med so that’s something.) She told me to stop driving, which I already had limited – minus the last few weeks for my mother-in-laws funeral and Audrey’s lacrosse game, but I (and others) prayed a lot and Jesus protected us. And I’ll go back to the limited driving I was doing.

So, you’re probably wondering how I’m doing. I honestly don’t really know. One minute I feel okay, I mean does it really matter what it’s labeled? The episodes were happening regardless so it doesn’t really matter if they’re migraines or seizures or something else. Does it? At least we’re on a path to figuring it out. If we know what it is then we can possibly treat it. And that’s what we want. That’s positive me. She’s delightful.

But seizures. No driving. Medicines that don’t work. With terrible side effects. And what about surgery? If that’s an option would I be willing to have brain surgery? Again. Third times a charm? That all feels a lot worse than migraines. This is spiraling me…not as positive. Not as delightful.

And each time I have myself talked into a scenario of Epilepsy vs. Migraines I find something else for the other side. Like if they are seizures why did they just stop for a year from Feb 2023-Feb 2024 and again from 2024 to mid-2025? And where does the double vision come in? That seemed to make more sense if it was an aura or related to a migraine but how does double vision link to seizures? And why am I having the dream snippets without the bubble?

I already had a lot of questions when I thought these were migraines but classifying them as seizures makes me have more, but also answers a couple.

And in true Jodie fashion I mapped this all out on paper in my office to see where they feel like seizures vs. migraines and captured questions I have.

But the bottom line is, we really won’t know until we get the episodes recorded. So, June 6 I will be admitted to the Epilepsy Monitoring Unit at Cleveland Clinic for a 5ish night stay. I’ll be hooked up to an EEG machine which will record my brain activity and they’ll take me off the migraine/seizure med I’m currently on to hopefully help make sure I have some episodes while I’m there. They will also schedule an MRI during my stay.

So I guess now we pray for my brain to cooperate while I’m there. We need to get some of this activity recorded so we know what we’re dealing with and how to treat it. And we’ll go from there. If it’s confirmed seizure activity the next steps will depend on what kind of seizures and if they can determine where they are coming from. That will make a difference if surgery would be an option or not. Does it feel like I’m getting ahead of myself? Probably. But this isn’t my first rodeo. And yet it kind of feels like it is because now this isn’t just about me. I’m not a 20-something single kid.

I have a whole family to worry about. But it also makes it more important than ever that we get these under control. My kids deserve a mom who can drive and be completely available to live life with them and the life we’ve been navigating the last few years has not been ideal. It’s been okay, but I want so much more for them.

I think what scares me more than the possibility of another brain surgery is being diagnosed with seizures that can’t be controlled via meds or surgery. So I can’t keep myself in that thought space too long.

And maybe after all this we’ll get the activity recorded and it won’t be seizures? One can hope.

So the countdown until June 6 is on. And once again I’m reminded that when I have general thoughts like “a break from the kids and parenting responsbilities would be nice” I need to be more specific or else I might end up getting it in the form an unshowered 5-day hospital stay hooked up to electrodes and a camera following my every waking (and sleeping) moment.

Start sending me your reading and binge-worthy movie/show recommendations please.