Epilepsy changing

I’m so sorry to hear this Molly. I have epilepsy but have only had one tonic clinic seizure which was back in 2016. I had absolutely nothing since until I became pregnant in 2023. I had some warning seizures so immediately spoke to my epilepsy nurse to sort my meds, she said that sometimes pregnancy hormones increase/change your epilepsy. She said some women develop pregnancy related epilepsy, it’s so strange how the body works. Probably not helpful to you at all, it I just wanted to share 🤍

Hi! I've had night time seizures before I started medication and ever since it's mostly been auras during night time. These did change over the years though. Had nothing to do with pregnancy. But years ago I'd use to smell things during an aura, then it changed and I had visual auras like little flashes and dots and then it changed again and I'd have a couple of seconds where I wake up feeling really sick, then a strong deja vu feeling then go back to sleep. So I guess it's a dynamic thing anyway. I heard about epilepsy changing during pregnancy I think it's not uncommon. Make sure you adjust your dosage if you need to. Are you seeing your GP regularly? By the end of my pregnancy I had tripled my dosage.

I have absent seizures but I had my first and only tonic clonic seizure over a year and a half ago (before I was pregnant). They put it down to emotional stress. I have no advice or strategies. Hopefully you’ll find some medication that will help x

I’ve increased my dose, and very fortunate to see my epilepsy nurse and midwifery team more frequently. They have been super supportive.
It’s just crazy that I’d been seizure free for 3 years, to then having seizures again which are different to my original diagnosis! I don’t get any warning signs or auras, which is what’s making it scarier!
I’ve just been signed off of work because of the epilepsy, which will hopefully be helpful in terms of my mental health!

no, this is super helpful. Thank you for sharing! It’s definitely made me feel less alone, knowing that other women have other epilepsy stories to do with their pregnancy!

Yeah that really sucks I'd be terrified too. How many weeks are you? 3rd trimester was very stable for me. Maybe it gets better for you too. I really hope it all changes back to normal once you've given birth! 💗

Oh I’m so sorry to hear this lovely. As if tonic clonic seizures aren’t scary enough you’re dealing with them while pregnant… 💔

I was fine while pregnant with my first. And actually for a long time after. And by fine I mean, seizure free. Whereas historically I’d always had tonic clonic seizures.

Then randomly with my second pregnancy I had one breakthrough tonic clonic seizure. Because it was just one they didn’t do anything and after I seemed to be fine, seizure free and back to normal. Then third pregnancy happened and again another grand mal seizure. At this point they told me the increase in blood during pregnancy can affect the levels of the meds I was on so they increased them for my pregnancy, which stopped any more but 🤷🏻‍♀️ luck or management?

Assume you’ve spoken to your neurologist?? Have they made any recs? Always happy to chat if you wanna message xx

27&4, I’m hoping it will get better. Work has been super stressful, so that’s the most obvious trigger. I’ve just been signed off for the next 6 weeks! X

it would be great to message, if you’re sure that’s alright?🩷

of course!! xx

I’m lucky I’ve been alright throughout both pregnancies so far but I am doing certain things throughout to minimise stress factors such as planning a home birth , eating well , sleeping plenty and getting enough rest, not increasing stress levels , staying calm, using deep breathing exercises and yoga / meditation xx

sounds good! I might give breathing exercises a go! Xx

pregnancy is already a stressful process on the body and we should 100% do what we can to keep it to a minimum xx

yeah, it’s so true. As a pregnant person I’m fine, as an epileptic I’m not but my boss doesn’t understand that it’s my epilepsy playing up! Stressfuln

I would definitely speak to your neurologist ❤️