epilepsy and pregnancy

[henryhsmum]

Hi everyone

Not sure if this is the right board to post this. My situation is quite strange. I had my son when I was 25 (in 2006) and prior to that was not epileptic. Then, when my DS was 13 weeks old I was out for a meal with friends and had a very bad seizure where I was unconscious for over 20 mins. I then had another seizure in my sleep about 2 weeks later. After the second seizure I went to see a neurologist who said that they seemed to be epileptic seizures although with no obvious explanation as to why I had developed them so late in life and with no head injury etc. My case was very odd as I had these seizures totally out of the blue having never shown any signs of epilepsy before. The consultant ran MRIs, EEGs and lots of tests but they never found any evidence of eplipetic activity. So I was basically diagnosed as having had epileptic seizures by default although I have never before or since shown any clinical signs of epilepsy. I now take lamotrigine, 75mg twice a day as I was put on it after the second seizure. I have thought of coming off it but it is just not practical for me to stop driving whilst doing so.

I am not 100% sure what caused the seizures but myself and the consultant thought it was more than a coincidence that they happened after the pregnancy. I think they were one off catamenial epilepsy trigerred seizures. I did a lot of research into this and realised that the seizures coincided with my first period post partum and that the first one basically occurred about the time of ovulation and the second just before the period. I believe the reason I had the seizures was because my hormone levels (progesterone and HCG) were about 3 times average during pregnancy and so when they fell I think it basically trigerred a massive inverse reaction which trigerred seizures at the same points in a menstrual cycle as someone with catamenial epilpesy would have them.

I am now considering having another baby but I am basically petrified of having the same thing happen again with the seizures. I don't think I would dare risk driving for a while after the birth given that I was unconscious duirng the first seizure, I was very lucky that my DS wasn't with me at the time. Saying that, we live in a village so not driving will be a pain. I also had a very traumatic birth with my DS , 55 hour labour and a high forceps delivery and he stopped breathing for 2 mins at birth. I was told at the time that next time I would be best advised to have an elective c section.

I was wondering if anyone else on here has had experience of one off seizures trigerred by pregnancy or am I a unique case? I believe what I have had is rare as I saw Dr Dominic Heaney in London who is a pregnancy/epilepsy specialist and he hadn't seen this happen before.

I also have a few questions about having a baby when you are epilpetic/at risk of seizures:
What are the risks to the baby by being on AEDs during pregancy, bearing in mind my dose of lamotrigine is on the low side.
If I upped my lamotrigine dose after the birth would it be likely to prevent a seizure?
How much more likely are seizures during pregnancy?
Are c sections better/more risky if you have epilepsy (I think I would have to have one for other birth related reasons)?
Can you breastfeed while on lamotrigine?

I hope thats not too long and not too many questions! It just would be nice to get to know some people on here who have more experience of epilepsy and pregnancy

Hi there,
No personal experience of this I'm afraid but I wanted to let you know that the mum of my schoolfriend 'became' epileptic during her pregnancy with my friend. This was 34 years ago though. She also developed bad acne which she had never had before either.

So although it must be very unusual it's not totally 'unique'.

Good luck!

Sorry just reread and realised you said it was after pregnancy, d'oh. So not the same thing, ignore me. But still good luck!

Don't know about pregnancy-related seizures, but DD1 has epilepsy and was on Lamictal. Lamotrigine is one of the best drugs for women as it has the least likelihood for birth defects in pregnancy (unfortunately DD1 couldn't tolerate it so the new doctor put her on Topiramate, her "proper" doctor said she shouldn't take that if she could help it as she's child-bearing age, it was him that said Lamotrigine was the best of the AEDs). 75mg is a low dose, DD1 was on 250mg twice daily (until she couldn't take it) and could still have gone higher.

It's really interesting to hear other people's experiences. It's especially interesting about the lady who had epilepsy during pregnancy. It sounds like the fact she had acne during pregnancy too suggests it may have been hormone linked and I know catamenial epilepsy is basically hormone triggered epilepsy.

I think I am lucky that my medicatio is one of the safer epilepsy drugs. My consultant has said I could come off it but I just can't stop driving and DVLA rules mean I would have to stop for about 9 months while withdrawing medication.

I think my family (not my partner) will think I'm mad for wanting another baby after the seizures I had after my DS. on top of that the birth was awful, I was absolutely huge (looked more like a twin or triplet pregnancy) and my DS now has autism! Still, I am not totally put off by the experience I guess I just want to feel I am in control of the risks with the epilepsy and birth if I have another baby.

Have you tried the forums on the Epilepsy Association and National Society for Epilepsy websites? there are bound to be some mums on there who can tell you more about their medication and pregnancy.

I will try those forums definitely. My case is a difficult one as even the consultant is mystified by it. He said my theory about it being triggered by hormones was possible but unfortunately it can never be proven in retrospect. It's the lack of a definite explanation that worries me most to be honest as it's more difficult to be in control of it

Epilepsy can be damn frustrating like that - there was no reason for DD1's. MRI/CT/EEG - nothing abnormal. Started about 2 years after puberty so not that. Not linked to menstrual cycle. So we just trial and error with tablets and hope that one day we get it right (she was having a fit every 3 weeks) - which we thought we had done with the new tabs (no seizures for 6 weeks) until the doc told us that she may have risks in pregnancy so we need to change again.

i have what they call early adult onset epilepsy. just kicked off when i was 24, new years day for no reason, mri' show nothing only the eeg showed up something so i have what you would call generalised epilepsy. this happened after i had my second child. i didnt take any medication for ages because i only had 2 a year and loathed the thought of being on meds everyday. then i got preg with 3rd child had one fit when i was pregnant caused no damage thankfully (i have grand mal seizures) and i went on to lamotrogine because it fine for breast feeding etc, not only did it not control my seizures but i started having more and absences and other things. it was a horrible drug for me and they kept upping it. long story short i stopped taking it am on my 4th child (unplanned) am on topiramate obvious worries but no seizures so its a trade off so far. oh you have to take large dose of folic acid to try and combat possible birth defects. i am currently taking 8 pills a day till i can get them prescribed

I will definitely take the folic acid. It sounds like I have been quite lucky as my seizures aren't active. I am in two minds about the breastfeeding. I did with my son until the first seizure so til about 3 months but then I was too ill and on clozapam (I think) for a while so was told I had to stop breastfeeding. Luckily he took to bottles immediately. Main reason I would not breastfeed this time is so others could share the feeds and hence reduce tiredness as I know that's a risk factor for seizures.

Spooks how long after your second child being born did you have the seizures, did they mention any link to DC birth at the time?

Personally, I believe I had epileptic type seizures but I don't think I am epileptic as it basically disappeared since the first 2 seizures even with me being on a low dose of lamotrigine. I think the lowest dose for lamotrigine is 100mg a day and I am on 150. I am really worried about a seizure though as I am hoping to go back to work and in my line of work I need to drive most days.

no mention of the birth of child being a reason for it, she would have been 2. i had febrile convulsions as a child when i had high temp some people just have a lower seizure ratio than others. but we all have one. the general rule of thumb does tend to be that if you have more than one spontaneous seizure then you have epilepsy and you shouldn't drive till your seizure free for one year. yeah i am always likely to fit if tired and hungover also no reason why you cant have natural birth did with last and plan to again. obviously the stress can bring on a seizure and you wont be able to have a home birth/water birth but it isnt particularly likely and they will have meds on stand by just in case prob diazipam which would stop any seizure dead, god i love that stuff. again being pregnant isnt any more likely to encourage seizures in my experience though there are studies that show that is can reduce and bring on seizures.
you can check out http://www.epilepsyandpregnancy.co.uk/ they have loads of info. i will prob breast feed a bit as its a good way to wean off as they will become use to the drug in the womb. sorry for the rambling.
try not to worry to much and try to live your life as fear free as possible. i know its a really scary thing especially since you have no control over it but in the grand scheme of things there are actually worse things to have. i try to laugh about it as much as possible because sometimes as scary as it is it is really funny to. like the time i went to work and was walking threw the park and had a fit and choose this day not to wear any knickers and a skirt i was found by a 15 year old boy who ran and got his dad. the shame. i "woke up" to the ambulance men covering my glory with a sheet. there is no way that isnt funny.

sorry try this even www.epilepsyandpregnancy.co.uk

I am six weeks pregnant and I've got MS and epilepsy. I was told I could stay on lamotrigine throughout and BF but in the end it wasn't holding my seizures down and I switched to Keppra. Seems to be working and I've been told I'll be allowed to breastfeed too. I just hope I won't be too tired. It's nice to hear that I'm not alone - hello everyone!
Latest from my epilepsy nurse is that the advice about pethadine has changed and epilepsy sufferers are allowed it now - I am going to ask her for more info when I see her.

really pethadine?? i didnt think hospitals still used that anymore because of the effect it has on the baby know my local hospital doesnt. well at least it didnt 4 years ago the rate things change for pregnancy and babies though one minute you can eat nuts the next you cant .

I know. Oooh maybe they don't use it anyway then. This is my first baby so not really sure what's usual.

henryhsmum I hope that the news about being able to breastfeed on lamotrigine is helpful, and I also use epilepsy action a lot and the NSE. Their resources are very useful.

I am 21 weeks today with my first baby. I am also epileptic.

No advice at all but having not had a seizure for a decade I was really concerned that pregnancy would trigger it all off again but, touch wood, all seems ok so far.

I have to go and see a consultant at the moment just to check - there might be someone at the local hospital you can go and have a chat with to put your mind at rest?

Good point pottering or perhaps GP can refer you to one if you are no longer under a consultant - were you discharged OP?

Hi

Thanks for all the links, I will definitely check them out. I am sort of discharged from the consultant. I was seeing a specialist in London but now I live in Shropshire so I asked to transfer to one locally. I saw the epilepsy nurse earlier this year and she basically said I wouldn't need to go back unless seizures talk. I didn't talk to her about pregnancy as I wasn't thinking of it at the time.

I will have a think about the breastfeeding too. It's good to know I can if I want to with lamotrigine. I have kind of convinced myself that bottles might be easier as I could get help from other people with feeding. My DS is autistic and very demanding which is one of the main reasons I have been unsure about having another child. The epilepsy and childbirth experience I had just add to my concerns. I think that's why I am so anxious to try and be sure I won't have the seizures this time as it would be very difficult to deal with given how my DS is.

Interesting about the pethidine, I had that about 10 hours before DS was born. I wonder if it is linked to seizures