Withdrawing Medication/Pregnancy

[michelle00912]

Hi, I had bacterial meningitis aged 4 which left me with scaring on my right temporal lobe. I had severe tonic clonic seizures often leading to status epilepticus.

Aged 15 I had brain surgery to remove the scaring, I had 2 tonic clonic seizures since which were closely after surgery. I am now 26 and 8 years seizure free. My seizures were triggered by hormones (week before my period), being too hot, being too excited and being too tired.

My partner and I would like to start a family in the next few years. I take Keppra 2000mg daily but would love to come off my medication, do you think there is a chance my seizures could come back?

Thanks.

[Dr Hannah Cock]

Dear Michelle,
I'm very pleased to hear that you clearly had a good result from surgery for what sounds like previously difficult epilepsy.

Making a decision about if and when to try withdrawing from antiepileptic medication is a very personal one, and there is no right or wrong answer. Although in some cases people do come off medication and the seizures never come back (i.e. they really were "cured" by the operation), in others, even when they have been free of seizures for many years - withdrawing the medication is associated with recurrent seizures. It seems in these cases that the operation has converted someone who was "drug-refractory" to someone who is "drug responsive", but in whom seizures will recur if medication is withdrawn.

On a more positive note, Levetiracetam (Keppra) looks like one of the safer drugs in pregnancy, without any significantly increased risks of birth defects or learning/behavioural problems in the children born following exposure during pregnancy.

I would recommend that you discuss this with your local epilepsy specialist. If you are no longer followed up in an epilepsy clinic, you can ask your GP to re-refer you. They will be able to give you more individualized advice. The things you would need to cover would be a) the risk of seizure recurring if you were to stay on medication vs come off (there are never any guarantees, and the risk is never lower than about 10%/year - i.e. 1 in 10 - the problem being that there is no way of know if you are the 1 person who will have another seizure, or one of the 9 who won't). b) the potential consequences to you if you did have a recurrent seizure (risks of injury, psychological impact, driving) and c) the down sides of staying on medication that you might no longer need (how you feel about this, pregnancy, and the longer terms effects e.g. on bone health)

Hope that helps rather than confuses!
Hannah

[michelle00912]

Hi Hannah,

Many thanks for your detailed response

[Andrew Kelso]

Hi Michelle

I agree completely with everything Hannah's said.

I'd also advise you ask your GP to prescribe you folic acid 5mg if there's even slightest chance you might become pregnant, even accidentally. Folic acid is a vitamin and is though to be protective against some of the potential risks of anti-epileptic drugs in pregnancy. Its effect is greatest around the time of conception, so its a good idea to get on it as soon as possible.

If you do become pregnant, consider enrolling on the UK Epilepsy and Pregnancy register (www.epilepsyandpregnancyregister.co.uk) - more information about this is found on their webpages, but in brief, its through the work of this organisation that we understand as much as we do about the effects of anti epileptic drugs in pregnancy, and as its such an important area, the more information the better!

Good luck and best wishes

Andrew