When to start maternity leave with epilepsy?

[Krakinou]

I’m currently 17 weeks pregnant, due end of December. I live in Spain so not sure how different things are here to the UK. Basically here mat leave begins when you give birth, but before that women generally get signed off on sick leave by the doctor. (I think that’s how it works -feel free to correct me).

I have an office job so the guidance I’ve read says I’d normally be signed off around week 37. Thing is I’m also epileptic and tiredness is a massive trigger for me. I tend to have a tonic clinic seizure (the type where you lose consciousness) every 2-3 months. I don’t get any warning and I don’t need to be what most people would consider unreasonably tired - a long day at work followed by dinner out would do it. I had one seizure at 7 weeks and baby was fine but I’m worried about this happening in the third trimester.

Does anyone have experience of this and when did your workplace sign you off? Is it unreasonable if I ask to be signed off around 28 weeks?

It doesn't necessarily sound unreasonable to me, or at least your would could agree some wfh provisions, however i definitely think you should have a chat with your doctor since they will presumably be the one doing the signing off, and will have the knowledge of your condition. They will be able to advise how to keep you and baby safe and weigh up the risks. Just to reassure you a bit, everyone is different but I have a lot more energy now at 28 weeks than I did in trimester 1.

My work have been great so far and agreed I can wfh whenever I want to. And yes, at the moment I’m feeling waaay better than in the first trimester so hopefully that’ll keep going… I wasn’t sure if this was the eye of the storm since it’s my first pregnancy and I’m not sure what to expect. Good to hear you’re still feeling well at 28wks.

I think my doctors are good, but when I’ve asked about mat leave and birth so far they just tell me “wait, we’ll talk about it later”. I get it, but I just like to plan ahead because I suppose I worry a lot about feeling out of control, since seizures really take away that sense of autonomy when they happen.

I can't imagine what it would be like managing the stress of possible pregnancy symptoms, keeping baby safe and seizures but maybe they want to keep it open ended as aren't sure how you will be at 28 weeks- you may even have to get signed off earlier depending on how your pregnancy is going, or you may feel perfectly fine at 28 weeks and able to go on a bit longer with regular review, so i can imagine why they might want to keep it quite flexible and decide to sign you off when it's really needed. Not so easy with planning work handovers though! That's the first time I've heard of the system in Spain- interesting how they differ but good people get their full mat leave with baby but have the option to rest if the need to before.

Congratulations on your pregnancy!

I'm not epileptic, but my DH is and I have witnessed how lack of sleep is a trigger for his seizures. His neurologist has said to both of us good quality sleep (as well as medication) was key to limiting them.

Could you book an appointment with your neurologist? I think they'd be far more knowledgeable and much better placed to sign you off than an obgyn or a GP who probably has very limited knowledge of epilepsy or its impact.

Unfortunately sleep becomes more and more disturbed as the pregnancy progresses, so you're being sensible to push for this.

Will your DP be caring for your baby overnight or have you made some provision for this? I only ask as my DH's neurologist was very clear with us that my husband shouldn't be doing overnight care as broken sleep would lead to increased seizures.

Thanks for the answers so far. I’m giving this a bump because I’d really like to hear from others still. I’ve tried talking to doctors (obstetrician and neurologist) but I feel like the answers are getting vaguer and vaguer.

Maybe I had unrealistic expectations - I thought they would give me a set date to stop work, or some guidance as to what’s normal but the closest I get is “when you feel tired” or “we treat it like any normal pregnancy”. And firstly I have no clue how they treat a normal pregnancy - do women just work till their due date? And I have no idea when I might start to feel tired, or what “feeling tired” even means… when I need to nap in the day? Or when I get out of breath?

I don’t have an assigned midwife to ask because I’m classed as high-risk so I’m seeing an obstetrician but I feel like she just wants me out the office asap every time. I’m just panicking a bit today. I’m 21 weeks and I thought I’d understand more by now.

So when did you all start mat leave (or sign off as sick)? And did you have any illnesses etc that affected this date? I’d especially love to hear from other epileptic mums.

@Krakinou I'm not epileptic and have a non physical desk job, so I'm planning to finish at 39 weeks all going well to give me a week of relaxation before baby arrives.

I think it will be a hard question for the doctors/ midwives to answer as will probably depend on how you feel and every pregnancy is different. I'm 32 weeks and haven't been feeling too tired so definitely wouldn't feel ready to finish anytime soon.

If I were in your situation I would get to the point where you feel it would be safer to start taking it easy and then just ask to be signed off even if it is as early as 28 weeks. Work will have to deal with it, and it's going to be really stressful feeling like you have to determine that date now when you really have no way of knowing until you are there.

Thanks @Babyenroute ! It’s really useful to hear other experiences. What you’re saying makes sense and I suppose that’s the doctors’ point too. I just need to relax a bit and accept not knowing maybe.