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My seizures, my pregnancy, my worries…

While most mums-to-be continue to have good seizure control during their pregnancies, that’s not the case for everyone.

Luckily I had been prepared for potential breakthrough seizures

Rebecca: One day when I was around seven months pregnant, I felt that familiar feeling of strangeness coming over me. I stopped what I was doing. I let the sensations just wash over me and tried not to panic (as I used to do when I first had them). They [the seizures] were back!

During my seizures I am conscious but have reduced awareness of my immediate surroundings. I will respond but often experience extreme deja vu or a feeling of being somewhere in the past. The seizures, while unpleasant, are over very quickly. My main problem is that when I am having a cluster of seizures (maybe three or four a day for a few days) I generally feel very confused. I find it hard to understand what people are saying to me, difficulty finding words when trying to explain something, and problems with my short-term memory. However, for a couple of years before I became pregnant I was almost symptom free, other than when I was particularly tired or stressed.

I went to see the midwife. She got me an appointment sooner than was scheduled, at the high risk clinic. There wasn't really much time to involve the neurologist but to be honest I don't think it made any difference to the treatment. Luckily I knew what dosage increase had been recommended. I didn't feel too worried about the seizures as I think I had been prepared for it. The seizures did continue after I'd increased the medication but they didn't get worse. I kept having a few but they weren't too frequent or severe.

My seizure type changed in pregnancy

Nicola: Well, morning sickness stopped, but my seizures returned. I prefer morning sickness. Not full tonic-clonic seizures thankfully. What happens is that I can be having a conversation or watching TV and suddenly I will not be able to understand what people are saying. It’s like my brain can’t keep up enough to interpret the sound before it forgets it. It only lasts a few minutes but I feel quite panicky when it happens and I feel weird for a while after.

My neurologist increases my meds and I have to go into hospital – blood tests, more seizures, higher dose, more blood tests, and still the seizures keep coming. It’s impossible to know what the right balance is - as low a dosage as possible to control the seizures, as neither the drugs nor the seizures are exactly ideal for my little one.

Despite the concern about if everything will be OK, I love being pregnant. The only problem is that I am starting to get a tummy, not enough to look pregnant, just enough to look fat. Can’t wait until I am big enough to look properly pregnant! I know I am supposed to eat healthily but maybe just one more cake won’t hurt…? At least I am trying to eat my five fruit and veg a day, drink lots of water, and get plenty of sleep. Anything I can do to make things as good as possible. The little mite has enough to contend with, what with yummy AEDs in with his dinner!

The seizures are still occurring so finally (in my third trimester) my neurologist puts me on Keppra. I know it’s not great to be on two AEDs, but at least the major development [of Mr Wriggly] has been done. It’s mainly just a question of growing now. The Keppra stops the seizures in their tracks; even so we’ve had to make extra room in the cupboard for all the pills…

I am still loving being pregnant. It’s especially exciting when he starts to show his presence visibly with limbs sticking out and disappearing again. There’s a person in there! (Or is it an alien?)

Lamotrigine + seizures = extra blood tests

Emma H: I had very bad pelvic girdle pain, and in my last trimester really wasn’t sleeping well. But my epilepsy during my pregnancies wasn’t too bad.

Lamotrigine levels can drop in pregnancy. So I had regular blood tests to monitor my lamotrigine levels, and my medication was adjusted as required.

In my first pregnancy - I had a few myoclonic jerks – which I suppose were warnings. So my consultant increased my medication and I was signed off work to allow me to rest.  My second pregnancy went along the same kind of course. However I was signed off work a little earlier due to other complications (not related to my epilepsy).

I used forum4e when I was planning my pregnancy and while pregnant with both girls. I found that reading other people’s experiences really put my mind at ease.

 

Clair: I take lamotrigine. Pregnancy can have quite an effect on the level of medication in your blood - reducing it because your metabolism is sped up and because you have a lot more blood in your body. [This could lead to breakthrough seizures.]

My specialist organised regular blood level checks and my lamotrigine dose ended up going from 400 mg at the start of my pregnancy to 600 mg by the end. My dose was reduced as soon as I had the baby. I now take 450 mg, slightly more than before I was pregnant to take into account sleep deprivation which comes with a baby! 

Jennifer: No seizures thankfully. I was worried that I'd have one in labour as it was long and I was shattered. This was always a trigger, as was stress! Also I wasn't allowed to eat, given the threat of a caesarean section hanging over us after 24 hours.

Ingrid: I had one seizure at five weeks (focal seizure), but no more during the pregnancy or labour. Having spoken to a few specialists, I went onto lamotrigine a few weeks before my daughter was born. This was to reduce the risk [of having a seizure] in the first few weeks and months after birth.

“Most mums-to-be won’t have more seizures during pregnancy. But if your seizures do become more frequent or severe, speak to your midwife and epilepsy specialist or doctor. This may put your mind at rest, and will also assist your health professionals to give you and your baby the best care possible” Beth

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