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5.5 months pregnant and just been diagnosed with epilepsy - can anyone help

(22 Posts)
LoveAndSqualor Sat 16-Aug-14 19:28:13

Aaaaaaargh. Would be great to hear from anyone who's been through pregnancy with epilepsy, as I am officially Freaking. Out.

Had a tonic-clonic seizure in my a week ago - and realised from the ensuing back pain/bitten tongue that this is what happened at the beginning of my pregnancy to lay me up. My DH was around to witness this one, so there was no doubt. Seen a neurologist, who wants to start me on Lamictal to prevent further seizures, but I'm desperately worried about the possibility of harming my baby - the neurologist says there's a risk of developmental delays. Plus, I have another chronic health thing (I'm SUCH a catch) which I've been treating via diet/avoiding antibiotics etc for four years, and I'm worried that taking drugs would flare this and so bugger up my sleep - thus leading to further seizures, as lack of sleep seems to be the trigger. But - obviously I don't want to risk having another seizure, either. Aaaaaaaargh again.

Also need to decide re birth - whether to have a C section or not. Any advice VERY welcome ...

zippy539 Sat 16-Aug-14 19:32:32

Bumping for you because there's got to be someone in the same situation. What a bummer. Hang on in here for some good advice!

zippy539 Sat 16-Aug-14 20:14:56

Bumping again. Someone must be in the same boat.

MagpieMama Sat 16-Aug-14 20:49:12

I'll give this a bump for you too!
I have bipolar and had to make decisions about pregnancy and meds so can't advise but can sympathise. Have you heard if Dr Hale? His book about medications during pregnancy and breastfeeding is well regarded and worth a google.

Writerwannabe83 Sat 16-Aug-14 21:09:13

I have epilepsy and take Lamictal - please feel free to PM me x

LoveAndSqualor Sat 16-Aug-14 21:35:20

hey - thanks so much all of you - will definitely look up the Dr Hale book, and will PM you Writer - thanks! Meanwhile, if anyone else has been through similar - do please yell! xx

LoveAndSqualor Sun 17-Aug-14 09:31:44

Just bumping, shamelessly, for the morning crowd ...

MrsCK Sun 17-Aug-14 10:52:18

I've had epilepsy all my life. I'm currently 16+3 and involved in a medical trial. I'm on keppra. feel free to PM me!!

ACM88 Sun 17-Aug-14 11:39:00

Hey I have epilepsy, I actually have Petit-Mal epilepsy, and in the 15yrs I've been treated for it, I've only had three seizures. My epilepsy comes in the form of "absences" my eyes and mouth flutter, and my brain faints for seconds. I loose all awareness for seconds. It can be quite dangerous, I did this once when I was crossing the main road!

I take Lactimal, I've been on it since I was 16yrs old, mostly because I had a wonderful consultant, and he thought if I were to get pregnant, it was the safest tablet for me and baby. Prior to taking this, I was on Epilem, which is only prescribed to children. I am now 16+2, have a healthy baby, growing quickly, and I am still on Lactimal. I take quite a low dosage, but I feel comfortable knowing that it's safe. It's even safe to take during bf.

There is some conflicting advice. I would wholeheartedly suggest speaking to consultants over your GP. I have a lovely GP but she was adamant that I should come off my pills when I fell pregnant, which is something I was really against. It made me feel really vulnerable. So she prescribed me 5mg of folic acid, opposed to usually shop brought 4mg, and I went to see neurologist. GP said there will be developmental delays...there is heightened risk, but if you don't take tablets, you are at more risk of hurting yourself and baby.

It's very important that more than any other pregnant lady, you look after yourself. If you are tired, go to bed, if you feel the possibility of a seizure coming on (the only three I've had, I could feel coming) lie down, breathe slowly, and try to relax. It can be scary to think about epilepsy, but it's manageable!

With regards to birth, I've been called high risk in my blue notes. So home births, and possibly water births are out. I still plan to have a natural birth though, just in hospital. Unless your epilepsy is fairly severe, I wouldn't assume c-section is your only option. Speak to your midwife about this.

Writerwannabe83 Sun 17-Aug-14 11:48:25

mrsck - I don't suppose you are from Warwickshire are you? My Consultant wanted to enlist me in a trial about Lamictal and pregnancy but unfortunately the woman hd to be earlier than 20 weeks pregnant when enrolled, and she didn't meet me until I was 21 weeks gone.

LoveAndSqualor Sun 17-Aug-14 17:43:06

honestly - thank you all SO much flowers It helps immeasurably to know I'm not the only one. So far, my seizures have been tonic clonic but nocturnal, so I haven't fallen over or anything (though did SERIOUSLY hurt my back - it's still not better yet!). I gather that the risk to the baby from a nocturnal seizure is more to do with his oxygen supply being cut off, which is obviously a scary thought. DH said when he witnessed my fit that I didn't go blue myself, though, and was breathing throughout, so hopefully that means there hasn't been any effect from the fits I've had so far.

For me, the whole c section question is fairly fraught, as I really don't want to take antibiotics (due to my other chronic health thing - interstitial cystitis); would really like to avoid if poss. However, DS1 was 10lb 7oz (to everyone's surprise; I'd measured small all the way through the pregnancy) so the doctors were already agitating a bit for a c section (additionally, DS1's dad is about 5'11"; my DH is 6'4"...). Will see what the obstetrician says.

I know most people don't go down this route, but has anyone considered alternative/herbal treatment? It's of interest to me because, having been as western-medicine as they come, when I came down with interstitial cystitis 4 years ago I was horrified to find that there IS no treatment in western medicine. I've ended up treating it with a doctor of chinese medicine who uses probiotics (which seemed far more outré 4 years ago than it does today) herbs and diet. It's worked really well for me, so it's an avenue I'd certainly consider - just wondered if anyone else had tried?

ACM88 Sun 17-Aug-14 18:07:06

I don't know about herbal medicines, but I do know from looking after children with severe epilepsy, that controlling their sugar intake, there was a noticeable difference, not only in quantity of seizures during a day, but also in severity of seizures. I don't know if this is something worth researching for yourself?

Also things like limiting use of technology just before bed time. I read that watching tv, or using computer/tablet, just before bed, stimulates the brain too much, making it hard to switch off. Instead reading a book, having a ovaltine, or sleep easy tea, or a bath is recommended, so your brain can slow down. It does make sense, epilepsy is essentially the brain going into hyperdrive, so over stimulating it won't help.

scissy Sun 17-Aug-14 19:47:57

Another epileptic here, I had a DD whilst taking an anti-epileptic drug (not lamictal but similar) and she is fine. My neurologist explained that a) most of the risk is pre-12 weeks when the major organs are forming and b) I'd be at more risk if I didn't take anything. In terms of birth, c-section isn't a given. In my case I was induced at 40 wks (and given I was huge by this point that was fine by me!) which was my hospital's standard policy. Hopefully you'll be under "shared care" between neurology and obstetrics now - at my hospital at least they were pretty good at writing notes to each other saying what was best. One thing to be aware of if you don't have a c-section is they don't recommend pethadine for epileptics because its effects mimic what it feels like to have a seizure (or at least that's what my obs explained). Needless to say it tends to freak epileptic women out so they don't recommend it any more! wink
The only alternative treatment I know of other than surgery or VNS is the ketogenic diet but it's generally only used for children and as a last resort.

MrsCK Wed 20-Aug-14 21:49:53

writer no I'm not...probably the same study though!

happypotamus Thu 21-Aug-14 12:19:08

I have epilepsy and am currently on my second pregnancy. My seizures are well controlled by medication (not lamictal though). DD seems to have been unaffected (as far as we can tell after 3yrs) by the fact that I took the medication while pregnant with her and breastfed her, and the current pregnancy does not seem to have any problems that we know of. I have been under consultant care for both pregnancies and get seen by a specialist nurse with an interest in epilepsy and pregnancy as well as the obstetrician. I also had an extra detailed 20 week scan to make sure the medication had not affected the baby's development. You should get close monitoring of the levels of lamictal in your body as the pregnancy will affect that and the dose may need changing.
Nobody ever suggested in either pregnancy that a c section would be a good idea. I was told in the first pregnancy that I would not be eligible to give birth at the midwife-led birth centre (in my local hospital this is just down the corridor from consultant-led labour ward), but, as my epilepsy was well-controlled I arranged to meet the person in charge of the birth centre and she agreed that I could go there, but could not have a water birth (although she recommended I stayed at home as long as possible and used my own bath despite not being able to take the risk of me having a seizure in the bath in hospital with medical help available). I have been told that epilepsy would not affect the options for pain relief except not being able to have a water birth. So, I can't advise re c sections, but I see you have other reasons for considering one as well as the epilepsy.
The other thing to consider, if your epilepsy is triggered by lack of sleep, is the newborn period where you are likely to be sleep-deprived. My last seizure was a few weeks after DD's birth, and everyone assumes it was triggered by lack of sleep. At my last appointment they asked about how I planned to avoid that this time round, but I didn't really have an answer because, although DH will be around at night time, I plan to try to breastfeed again so won't be able to avoid getting up at night to feed the baby and I will also have a 3yr old to look after during the days so can't just sleep when the baby is asleep.
Good luck with the rest of the pregnancy. Epilepsy is so unpredictable that it is a scary thing to be diagnosed with. Even though mine is well-controlled and I have lived with it for most of my adult life, it is still worrying to live with because you never know what will happen.

MrsCK Thu 21-Aug-14 19:00:07

ACM I'm about the same into my pregnancy as you smile

Natalia32 Fri 22-Aug-14 07:21:50

I also have nocturnal epilepsy and already have a little one, currently expecting a second. My seizures and medication have been stable for a while. I still have them every so often but am trying to avoid risk factors and manage it without further increasing my medication. My 1st dc does not seem to have been affected in any way by my medication. If I were starting on the road to finding the right treatment when pregnant, this is what I would do knowing what I now know.

1. Finding medication:
- Not medicating is not an option. I understand why you want to find natural alternatives and in some types of epilepsy, it is true that diet is key (i.e. ketogenic diets, avoiding sugar etc), however now is not the time to experiment as having uncontrolled seizures would be more harmful to you and your baby than taking medication.
- You need to talk to your Dr about why he wants to put you on Lactimal (as opposed to other drugs), what the side effects are both normally and in pregnancy, and whether it is safer in pregnancy than other drugs. When I started taking my medication, I went through a year or 2 of severe side effects (drowsiness etc) before my body became accustomed to it. You need to understand how Lactimal is likely to affect you in your daily life, and your baby.
2. Understanding your triggers: again, hugely important to manage your condition. In a lot of cases, tiredness is a killer. But some people are photosensitive or have other types of triggers. Try and map out what you did before you had these attacks. Mine is lack of sleep, which means I pretty much gave up on breastfeeding as having seizures after the baby was born would be dangerous to both of us. As a matter of fact, I almost had one as I was holding my newborn. My husband barely had the time to swoop in and catch the baby. Not great. But many epileptic mothers breastfeed and manage perfectly well. You will know what to do.
3. Pregnancy: Again, make sure you are properly followed up by a team of high risk obgyns and a neurologist. You may be low risk from a pregnancy perspective but your condition and the fact you are starting with antiepileptics mean you need to be closely watched by the right consultants. Don't take advice from a GP (esp if he/she tells you to forgo medication!!!!). 5mg folic acid is what you need to protect baby from neural tube defects caused by AEDs, particularly in 1st trimester. As you are well into your 2nd, the risk is not as pronounced but you need to take the folic acid religiously.
4. Birth: obviously your consultant is best judge. In general, no reason why you can't have a normal birth but if your trigger is tiredness and you have been labouring for a long time, you might run into issues. Make sure your midwife or someone is with you at all times during labour, and you are never left alone. I seem to have read statistically very low risk of having seizures during labour, so that's a reassurance. Pethidine is not advised.
5. Breastfeeding: no reason why you can't bearing in mind the above, but make sure you understand possible side effects of medication for baby, and if there is a better alternative. There is a website, lactmed, that tells you what those are likely to be, but best to get advice from Dr as a lot of it is scientific speech and can freak you out with statistics etc.

After the birth your hormones will be all over the place. Between this and the sleep deprivation, your risk of seizures may be fairly high so take it easy and make sure you are not left alone with baby for too long. They advise to keep baby on low surfaces, no bath by yourself in case something happens. I know you said yours have been nocturnal. So are mine, except in the 3 months after birth when I had 2 fully awake, in broad daylight, so don't rely on being in your bed each time it happens. Seizures may also change as time goes by and what started as fairly manageable might get worse if you don't get it under control quickly.

Despite all this, please don't freak out. I know it is scary, especially as you are now pregnant, but if it is any reassurance, a lot of us lead perfectly normal lives with small adjustments. Hopefully yours stays nocturnal and you can go about your day without too much concern. Chances are you and your baby will be perfectly fine. Just make sure you are working as a team with your neurologist, and try to relax :-) Good luck!

Natalia32 Fri 22-Aug-14 07:29:59

One last thing, from what I understand, AEDs in pregnancy are particularly risky in the 1st trimester due to potential effect on development of foetus. It looks as though you are past that critical period so that's probably a good thing :-)

ACM88 Fri 22-Aug-14 07:39:32

Great post Natalia!!

lostinegypt Sat 23-Aug-14 17:05:14

I am epileptic and take lamitical. DO NOT stop taking these drugs or listen to any gp or midwife who says u should stop or reduce your dose. I was seen by an epileptic specialist before I was pregnant who told me not to listen to anyone else in relation to my drugs. It is a fact gps etc know very little about epilepsy. I have a very healthy clever 3 year old and am pregnant with my 2nd. Epilepsy makes you higher risk and you should take a higher dose of folic acid throughout your pregnancy. You will also beconsultant led care. The baby has a higher risk of cleft palate or cleft lip but they can check this at your scan. Also if your baby does have either of these conditions it is not the end of the world and can be treated. Lamitical isone of the newer drugs on the market although I have been on it for 14 years or so. It has the least side effects compared to other drugs. There isnt a significant risk of development delay. Your gp is talking crap!! These are with the older drugs. Don't worry!

ScrambledEggAndToast Sat 23-Aug-14 17:23:11

Oh OP, what a horrible shock. I was diagnose too, out of the blue but not during pregnancy when I was 18. Feel free to PM me with any questions.

DownstairsMixUp Sat 23-Aug-14 17:33:30

Hello love smile

I have had epilepsy since I was a teen but only diagnosed when I was 20 when I had my first proper tonic clonic seizure (I'd been having myclonic jerks and atonics since I was 13 but ignored them) I took lamactil during my first pregnancy (who is now a healthy 5 year old boy!) I had a horrendous labour, not related to the epilepsy though which left me wiped out and for some reason, them drugs stopped working after I had him. I had a seizure whilst on them 3 days post natally and they had to be switched. I had a normal delivery with him but I do wish I'd have had a section personally with him.

I'm pregnant again, having a section on 29th of august, currently taking keppra twice a day and have been seizure free since my son's last birth! All growth has been normal so far, I've had extra scans and doctors visits and honestly it's all been good. No break through seizures or anything. Have been very tired in third trimester so done the obvious things, taking vitamins, keeping on the folic acid and resting as much as possible. I have chosen to have a section this time for lots of reasons. First labour was just horrific and I like the control I have over this one, have got tons of support organised so if worse comes to worse and tablets do play up I won't ever be alone with new baby till I feel i am all settled to. I can get a good nights sleep before the op and the week leading up, not all the anxiety of not knowing when I can go into labour (i lost a lot of sleep during the week i went over due with ds1!) I feel so much more in "control" and so much more relaxed knowing i have everything sorted so my stress levels are also down which I think is making me calmer.

Things like breast feeding I found most of the drugs are ok to keep taking and bf as normal, dont be too hard on whatever decision you make with this. I didn't bf with my first ds, this time i hope to but I've set myself a routine already (thanks to a poster above actually!) of pumping at 12, 3, 9 and 6 every day, if he needs feeding more in between, that will be formula as i do want to balance out having a healthy baby and me being healthy to as I don't want to risk triggering the seizures. That way hopefully I can breast feed the majority but if I am feeling ultra tired and wary (I tend to get deja vu sensations before jerks/seizures) I can just go to sleep and hand the baby over.

You will be fine, if you have anymore questions feel free to PM!

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