hi everyone. I was diagnosed with epilepsy in 2006 and had treatment for a brain AVM in 2007. I started with tonic clonic seizures in 2006 but was put on carbamazepine and ever since then I only had focal aware seizures. I changed medication to keppra about 2 years ago to be safer for pregnancy and I just had my son on 25 January 2024. I had been seizure free for 6.5 years before pregnancy. In pregnancy I had a focal aware seizure at 12 weeks and 23 weeks. My keppra was increased each time and I had no further seizures until labour when I had two during labour. 2 days after my son was born when I was still in hospital, I had a tonic clonic seizure and another straight after, this was my first tonic clonic seizure since 2006 and has terrified me, I was transferred to intensive care for 2 days. I have now been put on an additional anti epileptic called phenytoin in addition to my keppra. I haven’t had any seizures since that Saturday but yesterday felt like a seizure was coming on but it didn’t. I am struggling with my anxiety about seizures and also struggling with guilt that I cannot look after my newborn the way I want to.
I am just hopefully looking for some advice from anyone who has been in a similar situation for ways to cope as ultimately I am aware that whether I have any further seizures is completely out of my control but I’m struggling to sleep even when my son is asleep and his dad is having to do so much more for him because I can’t.
Thanks everyone,
Lauren
Written by
Lily123456
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Being a new parent is scary enough from what I know (I don’t have any children ) but considering you were so unwell with tonic clonic seizures after giving birth, the additional anxiety is something very understandable.
Are you getting support from an epilepsy nurse/health visitor regarding how to cope with this anxiety? I’d hope so but know it’s not always the case.
It’s completely OK and healthy for your partner to be taking care of the little one while youre coping with being a new parent, having had what looks like a very traumatic experience so soon after giving birth .
I’m sorry you’re feeling so anxious and I’m sure there’ll be parents who use this message board that’ll be able to offer support with an understanding of coping with what you are.
Thanks so much for your reply. Yes I’m under the care of epilepsy nurses and I have an appointment in 3 weeks with a new consultant neurologist so I’m hoping that this gives me some reassurance. Being a new parent is scary enough without having my epilepsy be uncontrolled again.
That’s a rubbish experience! You're also going to feel more anxious and emotional than normal because of the intense hormones you'll be experiencing. I'd say it's worth talking to your midwife and health visitor about how you feel because there's so much support available for new mums and the way you're feeling is common even without the seizures. My friend had sepsis and was in intensive care and had very similar feelings to you. It took her five years to get proper help when she was pregnant with her second! Don’t struggle!!
I don’t have much advice to offer as I’m very newly diagnosed with frontal lobe epilepsy, however mine has surfaced through exhaustion and stress (I have 4 young children and my youngest was diagnosed with a health condition a couple of wks before birth, a very tough year for us). My neuro said sleep and rest is a non negotiable in terms of recovery and avoiding more tonic clinic seizures, obviously very difficult but please try as much as you can to let go, sleep whenever you can and allow help. This is coming from someone who finds it very hard but I’ve been petrified and am trying to do this as much as I can. You can’t be the parent you want to be if youre not looking after yourself first and foremost. Hopefully this will pass eventually !
Thank you for your advice and so sorry to hear what you’ve been going through. I just never thought after being seizure free for so long that it would have come to this x
I would also say if you can speak to someone about how you’re feeling or organise some support or therapy just to get those feelings out might help. I’ve just started some much needed therapy which I wish I’d prioritised much sooner x
Hi Lily, what a stressful situation for you. I was lucky and my epilepsy improved during pregnancy. But I was given prescribed Clobazam in case I felt like I was going to have a seizure. My friend has also been prescribed it (just a few tablets) to take if she feels a seizure coming on. I never had to take it but my friend has. No idea if it would help you but could be worth asking about. I'm sure you are a great Mum, parenthood is a huge adjustment at the best of times and we all do the best we can x
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