When the Side Effects Are Louder Than the Seizures
Trigger Warning & Content Note
This post discusses seizures, medication side effects, chronic illness, sleep disruption, vivid nightmares, appetite loss, nausea, dizziness, and the emotional impact these experiences have on both the writer and their family. There are references to distressing dreams and altered sleep behavior.
Please read with care, and step away if you need to.
Your wellbeing matters more than finishing this post.
Welcome Back to the Cryptid’s Den
Welcome back to The Crippled Cryptid, where disability, chronic illness, service dogs, and everyday sorcery all gather under the same soft lamp like friendly ghosts trading stories.
If you’re new here: hi, I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Medically interesting enough to make half my providers sigh when they open my chart. Truthfully, I sigh too.
I live in a haunted meat-suit with a highly questionable warranty.
If you’re returning: welcome home.
If you’re new here:
Welcome to the Lunatic Café.
On today’s menu: medication side effects.
I wish I could tell you that we were on to lighter topics today. Unfortunately, that just isn’t the case. This post is heavier, and it’s one I’ve been sitting with for a while now.
The Medication That Works
I’ve mentioned side effects here and there before, but the longer I’ve been on Keppra, the clearer it’s become that this medication comes with a cost I didn’t expect.
Keppra has done what it’s supposed to do. I haven’t had any more seizures since starting it full time, which matters. That part is good. I’m not disputing that.
But everything else it’s doing to me matters too.
The Physical Side Effects
If it isn’t the constant dizziness, which has my family worried sick, then it’s everything stacked on top of it. M&M has officially confined me to the wheelchair for all outings now, the first of which was today’s food bank adventure. I’m sure we both have some pretty loud thoughts about how that went…
And then there’s my appetite. Or rather, the complete disappearance of it.
Keppra leaves me feeling groggy and nauseated all the time. Even the thought of my favorite foods makes me want to run, albeit dizzily, to the nearest bathroom to throw up everything except my memories. I don’t want to eat, and at this point, I don’t even want coffee.
Which, if you know me at all, you know is treason.
I am a Coffee Gremlin™ almost as much as I am a Blanket Gremlin. So, if I’m saying I don’t want coffee, something is very wrong.
Every once in a while, I’ll get a strange little craving. When that happens, M&M runs to find me that food as fast as she can, because she knows the craving will pass as quickly as it appeared. Plain salted potato chips. Coffee. A tomato, cheese, and Miracle Whip sandwich. Never mayo.
Other than that? Appetite gone. Missing. Haven’t seen her.
It’s hard to explain how disorienting it is to live in a body that no longer wants even the things that once felt like comfort.
The Nightmare Problem
One of the biggest points of contention right now is that Keppra seems to be the Nightmare Medication.
I don’t know if it’s interacting with my other medications or if this is just how my brain reacts to it, but I’ve been having nightmares constantly. According to M&M, I talk in my sleep, roll over endlessly, and say the wildest things.
We used to joke that Benadryl would make you see “the Hat Man,” an old urban legend, and that we didn’t want to see him because we owe him money.
At this point, I’ve seen him every night straight since the 12th, since my second seizure. I don’t think I owe him anything. Frankly, if he’s going to keep showing up, he should start paying rent.
While M&M says I’m waking her and Luna up all night, making Luna work overtime and probably filing HR complaints, I don’t remember any of it.
I don’t remember the dreams.
Apparently, I wake up asking if I can bite her. I ask where she’s gone, if she’s lost. I tell her she needs to hide Luna because it isn’t safe here.
None of it makes sense to me.
Nightmares aren’t just bad dreams when you share a bed, a home, and a life with other people.
Luna is trained to wake me from nightmares. The fact that she can’t reach me at all means I’m in a sleep so deep that even she can’t pull me out of it. That’s terrifying in a way I don’t have the language for yet.
We found an old Fitbit in the house and set it up for M&M. It said she got under two hours of sleep last night.
And that’s on me.
Truthfully, even though she tells me that it’s okay… I don’t have words for how bad I feel. Especially when I know that it’s just going to keep happening since there’s no end in sight to how long I’ll be on Keppra, and how long it’s going to be in our lives.
What This Is Doing to My Family
Chronic illness doesn’t stay contained in one body. It moves through a household like weather.
My nightmares are costing M&M sleep. They’re making Luna work harder than she should have to. They’re changing how my family worries about me.
The hardest part is knowing my body is stealing rest from the people I love most.
And even when they don’t say it out loud, I know they’re all carrying some of this with me.
The People Who Hold Me Up
There’s something else I need to say here, because it matters.
Even when he doesn’t show it, I know my declining health worries the Yard Yeti. He’s my younger brother by seven years, and he has already lost more people than anyone his age ever should. His dad in 2019. Our mom in 2020. Our grandma in 2023. And Bear this year.
I hate adding myself to the list of things that scare him.
He doesn’t always show his worry the way others do. Sometimes it looks like quiet. Sometimes it looks like helping without being asked. Sometimes it looks like pretending everything is fine so no one else has to carry more.
I see it anyway.
And it’s not just him. I hate making my whole family worry. I hate knowing that my body is a source of stress, fear, and late-night conversations I’m not always awake for. I wish there were something I could do to protect them from that.
Because the truth is, I don’t know what I would do without them.
Support doesn’t always look like a picket fence and a matching holiday card. Sometimes it looks like my Aunt Dee in Texas mailing a Swiss Colony breakfast kit so we can make something special on Christmas morning. Sometimes it looks like extra-spicy birdseed sent just to keep the squirrels off my feeders and make me laugh. She knows I love to sit and watch the cardinals.
Sometimes it looks like M&M, steady and exhausted and still choosing me every day. Sometimes it looks like Luna, alert and gentle and working harder than she should ever have to.
And sometimes it looks like Aunt Lise. Talking us through recipes and food bank days. Laughing with us over coffee. Sassing us when we need it. Making me smile on days when that feels like work. Always with our best interests in mind.
Family isn’t always a white picket fence. Sometimes it’s two eyes and a heartbeat. Sometimes it’s chosen. Sometimes it’s stitched together from loss and love and stubborn hope.
I want 2026 to be the year I get to see them all. In the same place. Soon.
The Waiting
I have a lot of thoughts about Keppra.
- Keppra might be a great medication for a lot of people.
- I’m not even saying it’s bad for me.
- I am saying that these side effects are wrecking me.
I’m exhausted all the time. I’m dizzy all the time. I never want to eat. I’m constantly nauseated. The nightmares are taking their toll on my entire household.
I haven’t had a full night of real, restful sleep since starting Keppra. I may technically be asleep, but that doesn’t mean I wake up rested.
I’m writing this on a Saturday, freshly released from Bed Jail™ because M&M and I are not getting along, which is probably at least partially because my nightmares aren’t letting her sleep. There’s nothing I can do about any of this right now.
I can message my neurology team through the portal. That’s it.
Monday is the soonest I might hear back, and even then, with Christmas so close, I might not.
There’s a particular kind of helplessness that settles in when all you can do is wait.
I’m still waiting to hear back about the EEG, trying not to stress about having electro-goo on my head and in my hair for three days, while also trying not to stress at all since we don’t know what’s causing these seizures. And stress plus seizures… I’m pretty sure you know how that goes.
The last thing I want is to stress out my family five days before Christmas.
Where I’m At Right Now
So, here’s where I’m landing today, without answers or conclusions yet:
- Medication side effects suck.
- Stability is complicated.
- I’m seizure-free for now, and that matters.
- The cost of that stability is heavier than I expected.
I’m not afraid of Keppra. I’m afraid of what happens if this is as good as it gets.
This isn’t medical advice. It’s just my experience, in real time, while I wait for answers.
Christmas, Anyway
I don’t know what comes next. But I know that feeding the people I love still matters. Even if the Yard Yeti is closely monitoring my kitchen usage. Someone please tell him that he doesn’t know how to cook…
Tell me in the comments what you’re doing for Christmas.
Are you going anywhere special?
Are you cooking anything meaningful?
This year, I saved up my food stamps so I could do something nice for Christmas dinner. We used to make a ham every year, but between doctor visits, hospital trips, Uber rides, and hospital stays, and higher bills than expected, presents unfortunately weren’t an option.
So, I decided a nice dinner would be.
When I saw that Meijer was selling prime rib roast for $8.99 a pound instead of $19.99, I grabbed one immediately, not to mention the nearly $20 my entire basket saved thanks to MPerks.
I’ve never cooked a prime rib before. I can’t even count on one hand the number of times I’ve eaten it in my life. But I’m excited to try.
It feels like a small way to say: we’re still here.
Trudging along through the weeds, yes… but we’re together, and that’s what counts.
Stay warm out there, and here’s to hoping 2026 is kinder to us all.
© The Crippled Cryptid– Disability, honesty, and a little chaos.
https://linktr.ee/skylanarissa
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