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Original poster

First seizure in 2 years while taking Keppra

17 replies

123namechanged321 · 15/03/2023 21:43

My daughter is 19 and was diagnosed as epileptic in April 2020 after many months of having myoclonic jerks and eventually one major seizure.
She's been on Keppra since May 2020 and not had any jerks or seizures since then but was watching videos on her laptop in bed and just had a seizure out of the blue.
It was scary to witness (I wasn't present for her previous one so this was the first time I've seen it happen), she's fine now, just confused.
There were no flashing lights in the video she was watching, she hadn't been drinking & doesn't do drugs. Her room was very warm & she was under her duvet so I've opened the window in case she'd overheated & that's what caused it but I'm so worried about her.
I'm calling her specialist first thing tomorrow but just wondered if anyone has experienced anything like this? Why would the meds suddenly stop working after so long with no warning or jerks? Unless she's been having nocturnal seizures and we just didn't realise?

OP posts:
Mermaidparades · 15/03/2023 21:57

Im sure that was such a shock for you, I hope your daughter recovers quickly. Has your daughter grown a lot since Keppra was first prescribed, if so she may need her dose increased. Has she any type of infection brewing? Or maybe something to do with her period?

I hope the specialist is able to shed light on this for you both Xx

Original poster
123namechanged321 · 15/03/2023 22:02

Mermaidparades · 15/03/2023 21:57

Im sure that was such a shock for you, I hope your daughter recovers quickly. Has your daughter grown a lot since Keppra was first prescribed, if so she may need her dose increased. Has she any type of infection brewing? Or maybe something to do with her period?

I hope the specialist is able to shed light on this for you both Xx

She did have a UTI last week & I know they can cause psychological problems in the elderly. I wonder whether that might have triggered it?
She did have her dosage increased last year as she felt like the jerks might be coming back although she didn't actually have any.
Thanks for taking the time to reply, it means a lot.

OP posts:
AuditAngel · 15/03/2023 22:07

This must have been very scary. My daughter had her first seizure on 7 March last year. She is also myoclonic, and has different types of seizures.

Did they test for light sensitivity? I know that they increased my daughters meds (Lamictal) so she had more coverage in case of stress when her increased metabolism might “burn through” more medication.

or has her weight changed?

nocoolnamesleft · 15/03/2023 22:07

Illness, particularly infections, can alter the seizure threshold, so the UTI might be why it happened today rather than another day, but the aim would be to control the fits even when unwell, so is worth making contact with her specialist in case her dosage needs tweaking.

Original poster
123namechanged321 · 15/03/2023 22:13

nocoolnamesleft · 15/03/2023 22:07

Illness, particularly infections, can alter the seizure threshold, so the UTI might be why it happened today rather than another day, but the aim would be to control the fits even when unwell, so is worth making contact with her specialist in case her dosage needs tweaking.

Thanks, it's reassuring to have found a possible cause. I've had a look on an epilepsy website which has said there's a link between UTIs & seizures so I'll tell the doctor tomorrow and see what he recommends about raising her dosage.

OP posts:
Original poster
123namechanged321 · 15/03/2023 22:15

AuditAngel · 15/03/2023 22:07

This must have been very scary. My daughter had her first seizure on 7 March last year. She is also myoclonic, and has different types of seizures.

Did they test for light sensitivity? I know that they increased my daughters meds (Lamictal) so she had more coverage in case of stress when her increased metabolism might “burn through” more medication.

or has her weight changed?

Her weight hasn't changed but I agree it sounds like she needs a higher dose.
Sorry to hear your daughter has this too, so scary to witness...

OP posts:
LoveMyKeeks · 15/03/2023 22:20

Hi, my brother has taken Keppra for years and in the last 2 years he started to have seizures again (he had the brain surgery back in 2013). When he checked the new box of tablets, they had changed it to a cheaper (same ingredients) brand. They eventually changed it back for him as they did admit it could cause side effects.

LoveMyKeeks · 15/03/2023 22:21

Just to clarify, the new tablet was still Keppra, it was just made by a different company. Maybe worth checking.

Original poster
123namechanged321 · 15/03/2023 22:25

LoveMyKeeks · 15/03/2023 22:20

Hi, my brother has taken Keppra for years and in the last 2 years he started to have seizures again (he had the brain surgery back in 2013). When he checked the new box of tablets, they had changed it to a cheaper (same ingredients) brand. They eventually changed it back for him as they did admit it could cause side effects.

Wow, that's awful! Thanks for letting me know, I'll get her to check them in the morning.

OP posts:
Mermaidparades · 15/03/2023 22:26

@LoveMyKeeks it’s so important to stick to the same brand of anticonvulsant, there’s no scope to chop and change due to cost! I’m so glad your brother got the right one for him again 💗

LoveMyKeeks · 15/03/2023 22:46

The pharmacist had put them in a plain white box and it was only when he checked the actual pill packet that he realised it was different. He wasn't informed by them and after some Googling, he wasn't the only one it had happened to. Apparently the old Keppra is pricy and this new brand cos less then £1 for the equivalent. It's scary that they can just switch them like that.

Mermaidparades · 15/03/2023 22:49

@LoveMyKeeks thats dreadful!!

nocoolnamesleft · 15/03/2023 23:14

Yeah, for most drugs changing brand doesn't make a significant difference, but for anticonvulsants you're meant to stick to the same brand (unless supply chain totally breaks, which can happen), as there have been a number of reported problems with brand switching.

Original poster
123namechanged321 · 22/03/2023 11:51

Quick update - after a week of trying to speak to her consultant, she's finally been assigned an absolutely lovely epilepsy nurse who's upped her dosage. Luckily she's been OK in the meantime but it's been a very stressful week!

OP posts:
Mermaidparades · 22/03/2023 13:20

I’m sure it’s been crazy for you. Glad things are being sorted xx

Original poster
123namechanged321 · 22/03/2023 17:46

Mermaidparades · 22/03/2023 13:20

I’m sure it’s been crazy for you. Glad things are being sorted xx

Thank you 😊

OP posts:
ArianahX · 23/03/2023 10:59

I'm sorry to hear your daughter had a seizure like that.

I switched from Epilim (horrible side effects but worked) to Keppra & have had tonic clonic seizures & partial seizures since then so the neurologist (through the epilepsy nurse) added in Zonisamide.
But I still have partial seizures. And don't feel safe traveling on my own due to photosensitivity.

Waiting to see the actual Neurologist for the first time in 12 years!

It's a shame I can't go back to Epilim but it caused: Osteopaenia (after taking it for 10 years), gastric problems, sedation & hair loss. I came off it originally & changed to keppra because I wanted children but sadly that hasn't happened. The hair loss on the Epilim was to me one of the worst side effects.

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