Living with epilepsy: Tips and support?

Hey everyone...
I’m honestly feeling pretty lost right now, so I’m coming back to you guys because I really need some help...
My 7-year-old daughter—for about six months now, she’s been having these moments where she just stares off into space. She’ll completely stop whatever she’s doing, totally blank out for anywhere from 5 to 30 seconds... it’s like she just shuts down. Sometimes she even rocks back and forth a little bit while it's happening...
She was actually my first child from a pregnancy that went perfectly smooth...
After we talked to her pediatrician, they suggested trying some Pentidan syrup at 250 mg. They told us it was supposed to be a mild option to try out first, but I haven't been able to find it anywhere... apparently, it's an import, so I'm still hunting for it. We were at the doctor's office this past Friday, so the search continues tomorrow...

Has anyone here actually dealt with something like this personally, or maybe had a kid go through it? What should I be expecting, and what steps should I be taking next...
Please, if you have any advice, let me know
Anything helps at all

Also, should I totally ban TV and computer time? (Though she doesn't really watch much screen time anyway, definitely under two hours a day)

The diagnosis listed on her paperwork says G 40.3 ?????? Does anyone actually know what that means...

THANK YOU SO MUCH IN ADVANCE

I deal with those exact same episodes you described—though I'm definitely not a kid anymore. 😉
I’ll just be staring at a single spot and "blank out" for a few seconds. It’s like I just shut down... For me, it usually comes with hand tremors, dropping stuff, twitching... and if I happen to be walking when it hits, I’ll end up buckling or hitting my knees on the floor.
To be fair, I was never a big TV watcher growing up—maybe like two hours a day max—and honestly, I still don't watch much more than that now.
But there's no real rule for this; everyone's body reacts differently. For some people, it's triggered by lack of sleep (which is my biggest issue), loud noises, flashing lights (like in a club or something), sudden bright sunlight, hunger, thirst, computers, screens, or even alcohol... it’s all super individual.
The best thing you can do is just watch your child closely to see what specific situations trigger it.
My best advice? Make sure they're getting enough rest and plenty of sleep! 👍

As for the medication or the diagnosis, I really can't help you there—I haven't seen anything quite like that before. 🤷

Hang in there! 🙂

thanks... honestly, it’s such a relief knowing I’m not just out here spinning my wheels alone...
I’ve got this gut feeling that the kid is just hyper-sensitive and extra perceptive, and maybe that’s the whole reason behind everything...
They’re actually getting plenty of sleep, but when it comes to eating, their appetite is pretty much non-existent...

Anyway, I’ll just hang tight and see if anyone else weighs in...

Man, what you said about potentially collapsing because of traffic or whatever really hit a nerve... it’s terrifying. It’s not like we’d ever let them wander off by themselves, but now? Now I can’t even wrap my head around the idea of them crossing the street solo without freaking out...

Have you had a chance to run all this by a doctor yet?
Thanks again, seriously....

G40.3 Generalized idiopathic epilepsy and epileptic syndromes Benign:
• myoclonic epilepsy in infancy
• neonatal convulsions (familial)
Childhood absence epilepsy [pyknolepsy]
Epilepsy with grand mal seizures on awakening
Juvenile:
• absence epilepsy
• myoclonic epilepsy [impulsive petit mal]
Nonspecific epileptic seizures:
• atonic
• clonic
• myoclonic
• tonic
• tonic-clonic

Yeah, I actually went to see a doctor...
...back about 4 months ago, I just blacked out from all the stress and lack of sleep—ended up in the ER. You know how the drill goes, right? They send you here, then there, seeing a neurologist, getting an EEG and everything... it wasn't until I finally got all those test results back that they told me it was epilepsy.
They only just diagnosed me (I'm turning 25 soon), but looking back, I can kind of remember those little episodes I mentioned in my previous post. I never really paid them any mind though, and my family didn't notice anything either.
I honestly thought it was totally normal. 🙄 ...or maybe I was just delusional 😳
When I was 12 or 13, it used to happen more often, but then it pretty much stopped... until I passed out this past fall. Since that one episode, I've had one grand mal, and just a few of those "minor" ones after a bad night's sleep...

The main thing is that you already got your daughter in for testing. Once they find the right medication for her, don't sweat it—things will settle down and you won't have to worry about letting her go out on her own.
I'm just a bit confused, though—why the liquid drops? Why didn't they just prescribe pills? It seems way easier to manage...

...honestly, I’m just sitting here wondering when they're actually going to get the therapy right for her...
it looks like they’re going to bring epilepsy into the mix, and then there’s that syrup they’ve been talking about...
I can't help but feel a little jealous—not really, but you know what I mean—that things never took a turn for the worse with you (thank God for small mercies)...

Thanks so much for the help... it actually caught me a bit off guard that you were the only one to jump in and reply... I really do value your time

Thanks!

No problem at all. Really glad I could help out even just a little... 🙂

Just one more thing—once she actually starts the medication, things should start looking up, and the risk of those episodes happening will drop way down.
They usually ease her in on the dosage so her body can get used to it.
It’s going to be okay, seriously, don't stress too much 🙂

I totally forgot to ask though—how often are these "attacks" actually happening, and did you notice any specific triggers? (Only if you've been keeping track!)

Quick tip: maybe try posting this over in the "Parents & Kids" section, or just ask the mods to move it there for you.
I'm sure you'll get way more specific advice there—the moms in that group are honestly wonderful. 🙂

Hannah Garcia122, please don't worry too much. Your little one is just going through those typical developmental shifts—it happens. Honestly, that kind of behavior can actually be quite common with epilepsy. Every brain processes things a bit differently, of course, but what you’ve described shouldn't be a cause for panic. My own brother went through these exact same reactions when he was small.
If she isn't glued to the TV for more than two hours, I wouldn't suggest banning it entirely; otherwise, she'll probably just end up wondering, "Why not me? All my friends get to watch..."
The main thing is just making sure she doesn't spend her entire day staring at a screen.

thanks...
but I’m low-key spiraling here... not saying I’m losing my mind, but I just want what’s best, you know? I’ve heard way too many horror stories about people getting stuck on the wrong treatments, and I am definitely not willing to take that kind of gamble with my own life...

The latest plan they gave me is... Apilepsin drops, 300mg/1ml for 10 days... then a follow-up appointment... and we see where it goes from there...

She’s looking pretty in Scarlett... but the seizures are hitting her 5 or 6 times a day now... sometimes less... today I actually noticed another "blackout" right when she was walking out the door—I'm thinking maybe the sudden change in light triggered it? Or maybe I'm just overthinking things... do you guys think wearing sunglasses might actually help?

It's hard to pinpoint exactly what's causing them... I don't think it's exhaustion because her "to-do list" and how much sleep she's getting seem totally fine... honestly, I don't even know anymore... I'm just watching everything closely, but still...

thanks again!!!

Smith... hey, what ended up happening with your brother? Did he just bounce back on his own or did he need meds to get through it?? How long did the whole thing last, and at what age? Sorry if I'm being a bit of a nuisance, just really trying to figure this out....🙂 😢

Maybe glasses would help—I don't know 🤷 but even then... she’d have to take them off eventually, you can't just live in the dark or wear them 24/7.
Did the little one get an EEG done?
Have they sent her for any other scans? Like an MRI, or anything else?
What was the basis for the epilepsy diagnosis?

I totally feel you—my parents still can't even bring themselves to say the word "epilepsy." My mom actually thinks it was a medical mistake; she even dragged me to see alternative practitioners, but I'm slowly just accepting it... what else can I do?
I asked my neurologist if there's any chance of getting off the meds, and she just said it's only possible if there are two or three years without any seizures.

Of course you’re worried. Honestly, you always are when it comes to her.
The sunlight itself isn't really the culprit here—not directly, anyway. It's more about those specific moments when the rays bounce off damp surfaces and filter through the trees, creating that weirdly intense glare.
And yes, glasses definitely help.
I’m honestly not entirely sure why he recovered the way he did—though, if I had to guess, I’d bet there was some heavy-duty medication involved.
You aren't being a bore, truly. I have a few things lined up to do later, but until then, I've got plenty of time—so please, ask whatever is on your mind. Believe me, if I were in your shoes, I’d be asking a million questions too.
Her liver will likely take a bit of a hit from all the medication. At least, that’s what happened with my brother—his liver was pretty damaged, but he was taking something specific to manage it.

He actually saw a psychologist back when he was a kid, too.

redsailor11 said:I totally get where you're coming from—my parents still struggle to even say the word "epilepsy" out loud. My mom actually thinks it was just some medical mistake; she even tried dragging me to those alternative medicine practitioners, which was... an experience. But honestly? I’m slowly just accepting it. What else can I do?
I asked my neurologist if there was any chance I could eventually stop the medication, and she was pretty blunt: only if I can go two or three years without a single seizure.

Scarlett, I really admire that mindset of yours. Epilepsy is such a heavy thing to carry, and it often drags depression right along with it.

Try to look at the silver linings—for instance, my brother used to have these moments where he’d just stare off into space, completely checked out...
One time, my mom was really riding him about leaving his socks all over the kitchen floor and tossing an empty milk carton back into the fridge. He wasn't saying anything to her, so she finally snapped and asked why he was acting like she hadn't said a word. My brother just looked at her and went, "Well, I have epilepsy, don't you remember that I sometimes zone out?" Of course, it was a complete lie.😁 And my mom knew it, too.

Look, I really wouldn't advise you to just drop the therapy, especially if her medication is actually doing its job. If we're talking about epilepsy here, things can go downhill fast if she doesn't get treated properly right away, and nobody wants to see that happen. It’d also be a smart move to steer clear of super bright lights or places that are way too loud, and honestly, keeping her stress levels down is huge too. If she stays on top of all that and plays it safe, she could see some serious improvement

thanks everyone...

look, I’m not saying we should just scrap therapy altogether... I’m just trying to get a pulse on what you all think... because honestly, sometimes a collective brain is smarter than just one single head...

I've already picked up so much useful info and different perspectives from all of you, and that’s exactly what I was hunting for... this whole thing is still pretty new territory for me...

Obviously, I'm going to listen to the professionals—the doctors and everything—but I want to hear from YOU guys too!

At the end of the day, if nothing else works, I feel better... so hopefully that actually means something... tnx

Hey everyone,

So, long story short, I’ve been dealing with epilepsy for ages. It’s pretty well managed right now—low dose meds, no actual seizures. Back in 2005, I had a C-section and ended up getting hit with hyperthyroidism. After being on meds for about eight months, I had to have surgery, so now I’m on thyroid hormone replacement therapy.
That’s when things started getting weird with the epilepsy side of things. Even though I’m not having full-blown seizures, I’m constantly getting these twitches—sometimes in my face, sometimes in my arms or legs. On top of that, I’ve had two instances where my speech just glitched out; I couldn't find the right word for a few seconds, so I just kind of moved on with the thought.
When I was at the hospital, they basically just threw two more types of anti-seizure meds at me and called it a day.
I was wondering if anyone here knows if issues with the pituitary gland—the thing that regulates TSH—or just general changes in how the thyroid functions could actually trigger these kinds of neurological glitches in someone with epilepsy?

So, did you end up going for that head MRI or CT scan?

Chloe Cook31 said:Then the new seizure-like symptoms start kicking in—not full seizures, but constant twitching, whether it’s in my face, arms, or legs. I've also had speech issues twice now where I just can't find the right word for a few seconds, so I just keep going with the thought instead.

I deal with those involuntary twitches and the "tip-of-the-tongue" memory lapses too; it's been happening for about three or four months now. I have hyperthyroidism, though I don't have epilepsy. The only real difference is that I still have my thyroid since I haven't gone through with surgery yet.

Oh, and have you noticed any constant fatigue? Because I'm feeling it, too. For instance, if I wake up at 10:00 AM, I'm already exhausted by 1:00 PM. It's brutal.

I mean, I guess any kind of neurological issue could actually be caused by problems with your kidneys

Ethan Garcia8, what you’re feeling—that specific kind of exhaustion—is exactly what I dealt with during my hyperthyroid phase. And honestly, that fatigue is just one of the milder symptoms. I went through a total living hell with this disease, but I really don't feel like reliving the trauma right now.
It’s not even that I can’t find the right words in the moment; it’s more like I physically can’t finish a single thought. You know that gross, hollow feeling? It gets even worse when you realize it’s actually an epilepsy symptom you have to report. Then, they just bump up your dosage, and suddenly you're spiraling straight into depression.
Kyle Nelson2, I’ve had both CT scans and MRIs on my brain, and they found a cyst on the right side—it's been there since birth, just unusually large.
That MRI was a complete nightmare for me, and now I have to go back in to see if the cyst is growing or staying put.
I’m dodging the appointment like a little kid because there is zero chance anyone is forcing me back into that morbid, claustrophobic machine again.
It makes sense to me that my thyroid could be triggering neurological issues, but my primary doctor and my neurologist both insist there’s no connection and tell me to stop overthinking it.
It’s driving me crazy because I have no clue why things have taken such a turn for the worse, especially since everything used to be totally fine.
Btw, with this heavy-duty medication regimen, getting pregnant is out of the question—it would be a total disaster for a baby.
Why do doctors keep so much from us?

Here’s the situation... I’ve been dealing with epilepsy since I was three years old, so I've been on various medications my entire life. Naturally, the endless cycle of pills, hospital visits, and specialist appointments gets exhausting. For the last two months, I haven't been able to stand on my own two feet. Yesterday, I went to the Mayo Clinic for an exam. The doctor ordered an MRI for my back and mentioned a slight curvature. Then, he suggested that most of this is more psychological than physical. Does anyone have any advice? Has anyone else dealt with something like this? How do you cope with being told it might be in your head?😕

What does it even mean when you say you can barely stand up? I mean, a "slight strain" probably isn't what's causing that level of pain—not by a long shot. Personally, I’m dealing with both epilepsy and three separate herniated discs.
Over the last two weeks, my anti-epileptic medication has been making me feel absolutely terrible, and as for the herniated discs... well, they are what they are, and there isn't much to be done besides trying to stay active with some exercises.
Have you actually gone in for an MRI on your back yet?

I’ve also heard people dismiss this kind of thing as being "all in your head." But what does that even mean, really? Changes in your spine and having epileptic seizures aren't just "psychological" issues—they can't *just* be psychological. It seems a bit easier for people to say that rather than simply admitting, "I don't know."