Just been diagnosed with epilepsy - and I'm pregnant. Argh. Anyone with experience?!

[UnsureOfOutcome]

Just wondering if anyone had any experience of the issues/drugs etc and could help me feel a bit less terrified!

I had a single seizure 15 years ago, following a week of nightshifts/flickery computer screen. Was checked out thoroughly at the time, but they couldn't see anything on the MRI or EEG, so thought it might have been a one-off. Nothing more until about two years ago, when I had about half a dozen moments of intense deja vu - again, I didn't know what this was, so didn't do anything about it.

I'm now 7.5 months pregnant with my second child. Slightly complicated story, but at about 22 weeks, DH woke to find me having a tonic-clonic seizure in my sleep. I realised, then, that I'd actually had one when I was about 5 weeks' pregnant too - had woken with bitten tongue and sore back, and couldn't work out what had happened. Went through all the checks again, and this time, they diagnosed temporal lobe epilepsy. Decided on balance to try to manage lifestyle stuff during pregnancy to avoid starting on drugs - all went ok for about 10 weeks, but had another nocturnal seizure last week (poor DH), and have now admitted defeat and am taking keppra, to try to protect me and the baby during labour, and afterwards.

The whole thing's been absolutely horrible, tbh. Scary for me, scary in terms of the effect on the baby, scary because the side effects from the drugs sound TERRIFYING - almost more so than the seizures. I just wondered whether anyone else has experience of epilepsy, and can tell me what keppra's like, whether it's really safe in pg - and how to manage the whole thing! Sheesh. Would love to talk to anyone who's been/is going through it. Also, was wondering to what extent pg hormones might be responsible for the sudden onset - has anyone else had experience of this? I think I'm hoping it'll calm down after the baby's born!

Any words of wisdom HUGELY welcome - I feel all at sea

What a horrible shock for you unsure . I don't have any experience but just wanted to offer a hand to hold until someone more knowledgeable comes along .

It seems awful that you've been left with such little advice/reassurance . Have you spoken to your GP ?

They're very careful with drugs and pregnancy and I'm sure they wouldn't prescribe something if there were risks . And of course all drugs have a list of side effects that make horrifying reading .

Hope you get some helpful responses here soon .

I have epilepsy (juvenile myoclonic) and have had 2 beautiful babies. I understand your concerns. It's all very scary though the doctors kept a close eye on me because I was pregnant so hopefully they'll do the same for you.

There were certain non-negotiable things that they insisted on e.g. had to give birth on labour ward with docs, needed to'expedite' the delivery if I got over tired. They also gave me some practical advice for after the baby was born e.g. said I shouldn't bath the baby alone and always change nappies etc on the floor.

Going to sleep now tho am really happy to answer any questions if you want to send me a pm?

PS I don't take keppra's, in fact didn't take any meds whilst I was pg. But I wasn't talking any anyway at the time.

thanks so much for replying, both of you - can't tell you how much it helps just to have someone to talk to! Geoff, they've said very similar stuff to me about labour - on a ward, and with an epidural, so I can rest (which, tbh, is fine by me ).

Do you take any drugs to control your epilepsy now, Geoff? I'm trying to work out to what extent it's going to effect m life - have been (foolishly) scaring myself a bit by reading online too much. I've also found, from the couple of seizures that I've had, that I have quite a bit of residual pain - in my back, still, from the first one, and around my collar bone from the second - I presume from pulling muscles. Is this normal?! I figure I'm also a bit stretched and sore from pregnancy generally and it's hard to tell what's causing what!

Again - really - thank you. It's been a weird and scary old time. Hoping things will settle down and normalise a bit after DS2 is born ....

I hope the meds work for you and you and baby are doing fine.
please don't forget to mention the medicine at time of birth (better put it in the notes/birthplan) as they would probably want a peadiatrican to observe baby when they are born.

Hi OP, I was diagnosed as an Epileptic when I was 11, I'm 34 now and I haven't been bothered by tonic clonic seizures since I was 22, however I still take carbamazepine as efforts to reduce this in the past has led to problems.
I've had 2 babies, when I was pregnant with my first I saw the neurologist who was brilliant and explained that side effects would only occur within the first 12 weeks of foetul development, with the emphasis on the anti-convulsant Epilim, which thankfully I wasn't taking, so the dr was quite happy for me to continue as he was worried that reducing my dose may cause problems for me, I had no seizures through either pregnancy and when I gave birth to my first I had an epidural to minimise stress, with my second baby I didn't have an epidural and had a very quick birth.
Both babies were and are fine, I understand your worry, I was always concerned that after years of not having fits that pregnancy would cause this but I was very lucky. Have you seen a neurologist during your pregnancy?
And to answer your question about muscle aches post seizure I used to ache from head to foot for days, particularly my legs, and I can remember biting my tounge so hard I could barely speak for 3 days. It really is unpleasant and so terrifying for anybody to witness, but my epilepsy is very well controlled, it might take some tweaking of meds for you but considering you have had a seizure in pregnancy it may be that your seizure threshold is sensitive to huge hormonal change.

Hi,

It does all sounds very scary. By the by, the consultant told me that there are specific epilepsy counsellors because many people say that the fear of having a fit is a major concern for people with epilepsy. It's definitely a worry, must be even more so to have come on suddenly like that esp when you're pg.

I take lamotrigine now though took carbamazepine for 10yrs, years ago but stopped as it didn't suit me (I should never have been on or in the first place don't get me started )

Have the doctors suggested anything for the aches and pains afterwards? Do you feel happy with the care you're receiving? Yuppy could try calling Epilepsy Action. They were quite helpful to me when I had a query a few years ago.

Dang autocorrect!

thanks so much, everyone - it helps immeasurably to talk to people who've been through the same thing.

mausmaus, I've spoken to the obstetrician about the drugs - she was great and very on it, which made me feel less freaked out about delivery. Would the paediatrician have to observe DS2 in the long term, or just immediately post-birth? I feel so horrible about taking drugs knowing he's getting the too

wellmoisturized - really glad your seizures are under control! It helps to know that that's possible. And so SO glad your babies were fine! I've been told to get into hospital fast when labour starts and to have an epidural too, which tbh I'm fairly relaxed about

I've seen a neurologist, yes - she's been great and very respectful of my questions and so forth. She couldn't tell me whether the hormonal changes were responsible for the sudden onset of seizures, but I assume that must have something to do with it - it's too much of a coincidence otherwise. I guess the question now is whether they'll continue afterwards or settle back down again. I'm now on day 4 of Keppra and am doubling my dose tonight. Eek!

GeoffLeopard I'm actually speaking to an epilepsy counsellor next week so will def ask about the aches and pains (worst currently is in the muscles around my right collarbone - god knows what I was doing. It's horrid not knowing what was happening to you...). Slight problem is that, at 34 weeks' pregnant, everything bloody aches anyway so tricky to work out what's what. Back and rib pain may well be just par for the course, I guess...

Again - thank you all SO much. Can't tell you how grateful I am to you for replying