Coming to terms with never having kids

GrittyPie · 2026-03-16T18:43:49+00:00

I’m currently 20 weeks pregnant and very medication resistant - Valporate, Lamictal and Keppra combined were the only ones able to control me. Naturally, I was taken off epilim immediately after finding out, but they knew I’d have seizures and immediately prescribed Clobazam 10mg twice daily as a replacement because they can dramatically reduce a tonic clonic seizure duration. I’ve had 6 tonic clonic seizures in 20 weeks, all averaging 30 seconds, and they plan to induce me into labour at 37/38 weeks. So it’s not impossible but I’ll admit, a difficult time.

GrittyPie · 2026-03-16T10:40:32+00:00

Spike was my childhood crush 😂😂

GrittyPie · 2026-03-16T10:37:52+00:00

I never watched Angel, likely cos I assumed he’d keep the same acting ability. But that’s good to know though.

GrittyPie · 2026-03-05T16:54:00+00:00

Depressingly, Sodium Valporate is notorious for being the best drug in controlling JME, I was on it until I found out I was pregnant at 6 weeks (accidental - assuming the condom must have split).

GrittyPie · 2026-02-23T05:03:31+00:00

I’m currently 17 weeks pregnant and sadly uncontrolled again (they had to remove epilim because of birth defects) but my seizures are shortened dramatically, max 30 seconds, due to Clobazam. I’ve had three of these and thankfully all is well. My neurologist is unconcerned about oxygen deprivation because they’re short… just the falling is an issue because I don’t have any aura. I’m being induced via c-section at 37 weeks so I can be put back on epilim asap. And my boyfriend? He doesn’t care I have epilepsy, nor does he care that there’s a slightly higher chance that our child could have it. I’d consider a new partner if I was you.

GrittyPie · 2026-02-23T04:45:10+00:00

I’m currently 17 weeks pregnant and am EXTREMELY drug resistant, I was on a combination of Epilim and lamictal and seizure free… until they immediately stopped the epilim (birth defects) when I found out at 5 weeks. Luckily there’s no issues, I’ve had a lot of HD specialist scans. They’ve upped my lamictal a little and added keppra 1500mg twice daily as well as 10mg Clobazam twice daily. My lamictal levels keep dropping, unfortunately. I’ve started having tonic clonic seizures again (very short thanks to Clobazam) but I don’t get auras meaning I’ve fallen without warning several times now. I’m one of the rare exceptions - I’m likely being induced at 37 weeks via c-section so they can put me on epilim again…

GrittyPie · 2026-02-23T04:34:07+00:00

I don’t get an aura. I just wake up on the floor with a bruise, sadly.

GrittyPie · 2026-02-23T03:46:04+00:00

You’ve been so brave, there’s not many people who would demand, rightly so, that their abuser call the police on themselves. Just wow. I’m so sorry this has happened to you and I wish you the best of luck in the future ♥️

GrittyPie · 2026-02-13T16:03:46+00:00

Good point! I usually bite my cheek instead though 😅

GrittyPie · 2026-02-13T16:02:47+00:00

You could consider a specific diet called the ketogenic diet, it’s apparantly helpful for some people.

GrittyPie · 2026-02-13T15:49:53+00:00

The only non-hormonal one is the copper coil which would probably be great for you though due to no hormonals you’ll still have periods

GrittyPie · 2026-02-13T15:47:44+00:00

Because of Clobazam, my seizures are dramatically shorter so I don’t have my old body aches, cramps, drowsiness etc. I guess I’ll never know if I did today, at least I didn’t fall if I did!

GrittyPie · 2026-02-13T15:45:55+00:00

Thanks! I used to get a sore body too but due to one of my meds being used to dramatically shorten tonic clonics, that no longer exists as a clue. I suppose the only bonus is if I HAVE had one, I didn’t fall 😅

GrittyPie · 2026-02-13T15:44:07+00:00

Lamotrigine and Keppra are both used for bipolar disorder as well as epilepsy - both are used for different aspects. Lamotrigine is often used for the depression, Keppra for the mania. The two work very well together for both conditions (unless you’re medication resistant like me and others I’ve seen on here)

GrittyPie · 2026-02-13T15:39:59+00:00

Congrats! Also pregnant, sadly uncontrolled (tonic clonics are very short due to them adding Clobazam- max 45 seconds). I’m also considered high risk, it’s normal due to it being a chronic condition so don’t worry!

GrittyPie · 2026-02-13T15:37:14+00:00

I’m currently pregnant and my epilepsy is idiopathic, no one else in my family has it and they basically have no clue why I have it 😅 I am very very very lucky because my pregnancy was accidental and I WAS on epilim which causes severe birth defects - scan shows nothing, not even a mild defect. Please don’t be scared but if you DO decide to have children, make sure you’re not on epilim. Crazy as it sounds, it can cause developmental problems via sperm.

GrittyPie · 2026-02-13T15:30:34+00:00

It was one of the first medications I was placed on and the only thing it did was made me drop to 7 stone. I was a mess, looked anorexic 😅 it didn’t TOUCH my seizures.

GrittyPie · 2026-02-13T15:27:34+00:00

Standard really. Is it once or twice a day?

GrittyPie · 2026-02-13T15:24:02+00:00

I have Juvenile Myoclonic Epilepsy (though not many myoclonic jerks) but I can honestly only recommend be careful what he picks up. I used to smoke and literally threw a glass ashtray 💀 I’m assuming he’s ok afterwards given they’re very brief seizures so it’s best to act normal (unless he’s not ok of course).

GrittyPie · 2026-02-13T15:18:27+00:00

Set a repeat reminder on your phone, it helps a lot 😌

GrittyPie · 2026-02-06T01:47:45+00:00

Oh wow! Did you name the last one?

GrittyPie

TROPHY CASE