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  • Writer's pictureKady Potter

Subependymal (grey matter) heterotopia: 2 big words I'm still trying to wrap my brain around

Updated: Mar 6

There's been a lot happening in my head lately. Literally. And now I'm going to try and get it all out of my head and into this blog post. I hope you've fastened a seatbelt before reading...

Nightmares in the middle of my day, what fun!

Since mid-2016, I've been having (what I thought were) panic attacks. I'll be just living my life, working or eating or doing whatever, and suddenly a thought will come crashing into my brain.

It's always an 'oh crap!' kind of shock horror thought: I should be somewhere else right now. I should be doing something else, or at least not doing this. That's why that thing happened, or why so-and-so said what they did. And it's an overwhelming feeling.

It's not real, though, my brain's made the whole thing up - I'll come back to that.

But in that moment, a massive wave of dread washes over me. I panic (duh). I stay mostly aware of where I am, but completely forget the day and time and what I'm meant to be doing. I stop talking mid-sentence, staring at the wall or floor to try and focus. I'm super confused.

Then comes the nausea. Sometimes it's just that uncomfortable sicky feeling, in the back of my throat or the pit of my stomach. Other times, I'm full on retching (but never follow through).

Once the sickness goes away, it's all over and I'm back in the room. I can never remember anything about that powerful trigger thought, because that 'oh no' situation never existed. I wasn't meant to be anywhere else, and that event or conversation never happened. I know that for sure in my normal state of mind, just not in the moment.

At first, those episodes came along once or twice every few months. They've gradually gotten more frequent - I now have up to 4 in a day, for 3-6 days in a row, every 2 to 3 weeks.

The hunt for someone who knows what's going on in my brain

Yeah, so me being naive and confused about what the hell was going on, I carried on for months - years - acting like they were panic attacks. I've discovered a LOT more than that now.

In the middle of all that illness and depression fun I was working through last year, I went to hospital for a CT scan. An interesting result... was the accidental discovery of a 'brain tumour'. Nothing to do with why I had the scan in the first place, found by random coincidence.

Okay. That is interesting. So, uh, level with me doctor: is it benign or malignant? "It's nothing you need to worry about right now, Kady, come back in 6 months."

As I think any reasonable (read: scared shitless) person would, I wanted a second opinion on that. I asked my mental clinic doctor to refer me to a neurologist at a bigger hospital. They told me the CT scan data from the first hospital wasn't detailed enough to tell either way (insert eyeroll here), and booked me in for an MRI.

If you've never had an MRI scan (especially not a head MRI) - it's not so bad. They gave me earplugs and headphones to wear, and a buzzer in case I freaked out. The only real issue I had was locking myself in the changing room by accident. Twice... Anyway:

That's my brain! And there's the mysterious lump in my brain!

I asked again: is this thing benign or malignant? "Well, Kady, it's neither. In fact, it isn't a brain tumour. If it was, it would've lit up with the contrast like a Christmas tree. This is something different."

Pro tip: medical conditions are great for learning new, complicated words

It's got the official fancy name in this post title: subependymal (grey matter) heterotopia. You might also see it called 'periventricular heterotopia'.

In normal speak: this bit of my brain ended up in the wrong place somehow. It should be around the edge, but got stuck in the middle as my brain was developing in the womb. That means it's been there for pretty much my whole life, and I've had no idea.

According to the neurologist who read my MRI results, this wayward, nonconformist piece of grey matter is almost certainly the cause of those panicky symptoms I described above.

Because they're not panic attacks, they're seizures, and I have epilepsy.

I can't tell you how confusing finding that out has been for the rest of my poor brain.

I mean, most importantly YAY for no tumour! I don't need brain surgery! That's all brilliant. At the same time... those little episodes may never go away. (Some research claims epilepsy medicine is way less effective in cases like mine.) They're not fun, and sometimes it's pretty scary.

Writing about this is nice and cathartic, and I also want to try and make this condition easier to research for others in the same boat (let's hear it for seasickness!). A lot of search results for 'subependymal heterotopia' are, naturally, links to scientific journals. They're informative, but the wording makes them feel like trying to untangle a ball of string.

Time to break down some of the science bits for all brains to handle

When it's used as a medical term, 'heterotopia' is almost always related to the brain. It basically means a section of body tissue (e.g. grey matter) that's in an 'abnormal' place. The rest of it's where it should be, but a group of cells ended up somewhere else. Like they were playing hide-and-seek and got stuck in the wardrobe for all eternity.

'Subependymal' is one type of grey matter heterotopia, named based on where in the brain it ends up (in this case, the middle). Other types of heterotopia appear in different areas, like 'subcortical' ones in white matter. It doesn't normally affect brain function - early studies show no negative effects on motor skills or intelligence.

It sounds fairly common for people with this condition to start having seizures in their teens or 20s. (I had my first episode at 28.) And it also seems more likely to happen to women.

The episodes I have are typical of 'focal onset aware' seizures, also known as 'simple partial' seizures. They're short, a few minutes max, and you stay conscious. I rarely pass out (but I may well have done and mistaken it for a drunk blackout before, alcohol can make seizures worse).

During a seizure I can let people around me know that it's happening, but if I try to explain the trigger thought or my fear it comes out as nonsense. Random words in an order that makes no sense. That's exactly what you want to hear from someone who writes for a living, right?

That feel when your own brain ends up being the hardest thing to live with

Now that I know more about what's going on, I can slowly start dealing with it.

I'll soon be prescribed some epilepsy medication, to see what effect it has (if any). Studies showing that medicines don't stop or control seizures caused by subependymal heterotopia don't mention the newer ones suggested to me. So... we'll see how things go.

Even if my seizures just get less frequent once the medicine kicks in, they're something I ultimately have to live with. I've already been told I can go back to Osaka eventually and carry on as normal. With the current state of the world, whether I end up doing that or not depends more on other factors... but I'll do my best.


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