Any parents with epilepsy?

[newy]

Any other parents with epilepsy out there? Mine was well controlled but became less so when meds changed so I could get pregnant. Post birth I had a tonic clonic and had to go back into hospital. Have had a few myoclonic since but getting better. DS 4 months old.

Hi - I suffered a huge tonic clonic (20 minutes) when I went into labour (July last year). Went on to deliver healthy boy, but have continue to suffer from seizures (always nocturnal and always big - min. 5 mins) ever since. GP, Neurologist, etc. etc. totally useless. Really depressing cos can no longer drive and live in the sticks, so really stuck at home most of the time. Still undergoing tests ... next one is sleep clinic!

Sorry to hear that. I was diagnosed when I was 10 so got a little use to it although in those days, no-one (ie family) really mentioned it. Now I think they would be joining support groups, raising money etc! I never really learnt to drive but that would be a pain in ass, now I live in London where car is more of a hindrance. My neurologist is very nice but find when I ask questions he looks them up on the internet!
I have increased my tablets of late which has helped alot. Try not to get too depressed, I think its about 85% of people have their seizures controlled its just it can take a while to find the right meds and dose. I also found sometimes my seizures would get slightly worse before getting better post increase. It also took a long time to see improvements. I think the docs often say a couple of weeks but I found it was more like a couple of months. Are you managing to get any sleep? This is a major trigger for me so husband was doing all night feeds!

Sorry, waffling on a bit here but found there didn't seem much advice when I was pregnant and after cos everyone's condition is quite different. How are you doing with your meds?

My turn to waffle on a bit!! ... I had never suffered any seizures until I actually went into labour (in my sleep). Initially it was put down to hormonal/pregnancy related, but when I went on to suffer several more the GP and Neurologist were baffled. Had clear MRI and EEG scans, but they decided to treat me for epilepsy and put me onto Lamotrigine. I have continued to suffer (2 in one night, 3 in another), so upped meds to 100mg per day, but have still continued to have seizures - again, always when sleeping. Hence next step being a sleep clinic. Tiredness does seem to be a big trigger. I sleep OK but DH really does suffer as he is now such a light sleeper cos paranoid that I am going to have seizure. DS now 14 months.

Hello, yes me!
Diagnosed when 11, tonic clonic seizures, was on Epilim from age 14, when wanted to start a family went to see GP to ask if it was ok, or whether needed to change, he said no, just take bags of folic acid, got pregnant, baby had severe spina bifida, would not have survived full term so had to have a termination at 21 weeks.
Afer that I did my own research and discovered that apparently 'everyone knows' that women of childbearing age shouldn't be on Epilim .
I'm now on Lamotrigine, which is much better anyway, less tired, etc, and now have beautiful DS 3 months.
Stress, tiredness etc all triggers for me, but have only had seizures in recent past when I've missed tablets , so really I don't notice it.

waffle waffle!

dp has epilepsy and we've just had a baby. Have been worried about the effects of sleep disturbance on his health but so far touch wood he's been ok.

I am on Epilim and phenytoin. I am 14wks pregnant with twins. I dont want to think about the abnormalities but had a scan yesterday at Kings and all ok so far. Keep your fingers crossed for us.
Were you ladies ok to b/feed or did they say no. Also natural or c-section ?

Oh merlypuss I don't want to scare you about my experience with Epilim. I have everything crossed for you I'm sure your twins will be fine, and it souds as though they are keeping an eye on you which is good.
Regards breastfeeding, when I was pregnant on Epilim I was told breastfeeding was fine, and having done my own research that advice is backed up by studies I've looked at.
I am now on Lamotrigine as I said, and haven't breastfed DS. Again I was advised it 'should be fine', but after past experiences naturally I wanted to do my own research as well. Studies and official advice I found indicated that Lamotrigine 'is probably ok' but as it is a fairly new drug, there isn't actually enough data yet to be sure. I didn't want to take the risk.
But as I say, with Epilim it shoud be fine. Don't know about phenytoin though. I will try and find the links to the information I found and link it for you.
I had a natural birth with DS.

this and
this were useful.

Just did a search for you and found this recommendation that you do not breastfeed on phenytoin.
I'd be inclined not to risk it to be honest, but have a chat with your consultant as well.

Thanks soooooo much FBB. Ans extra thanks for the good wishes. I thought the phenytoin was a no-no tbh and (pleae don't stone me for this) was kinda gonna use that as an excuse to bottle feed so that MIL and OH could help out. With 2 on the way I know I will hve my little legs run off and, with knowing that my seizures are triggered by lack of sleep, need as much kip as poss.
I would have like to b/feed or at least give it a go but have no fears about bottle feeding being second best as some people think. In my case it is bottle or nowt by the looks of it.
Back to Kings in Oct for cardiologist scan for twinnies (not my name, my neice's). Spine etc looked ok so hopefully .....

merly absolutely right decison, not worth the risk anyway. And just to say, DS is absolutely thriving on his formula, 'picture of health' as a doctor said the other day! Fingers crossed for your scan in October, let us know how it goes.

I don't have epilepsy myself, but my brother does, so I was very interested in this thread.

I'm glad the drugs mentioned are generally working for people. I would like to offer one piece of advice tho - my brother was put on a "wonder drug" called Keppra (sp?) 20 months ago, and it had very awful side effects: dribbling, weight gain, lethargy, dreadful shaking limbs etc.

As he is autistic (fairly badly) the docs tried to say the problems were behavioural and nothing to do with Keppra, and I could find no mention of the side effects on the internet. Fortunately we got him off it last November and he immediately returned to (nearly) his old self.

I'm sure it doesn't affect everyone in this way, but I wouldn't want anyone to have to go through what my brother did.

Hi everyone! Haven't had time to log on due to DS teething and demanding constant attention - think he's gonna be a diva!
FBB so sorry to hear of your experience Don't know when this was, but I went to a doctor about 10 years ago and was told to 'just go for it' when asked about conceiving on epilim. Decided against trying for a baby at this time and was put on Lamotrigine when I went back to a different doctor a couple of years ago so not sure when the study came out. Sounds like your experience was fairly recent though.
RE b/f do NOT feel bad about this! I started ff when I came out of hospital but did express about a bottle a day for a few weeks although think you might be too busy merlypuss!
RE folic acid - I was told that all women with epilepsy should be on 5mg of folic acid when trying to conceive. This is far greater than the 400mcg usually in prenat vitamins and is only available on prescription. Not all GPs are aware of this.
Kaz, your dose of meds is still quite low so they could still increase by a fair bit if necessary. Let us know how your sleep study goes.
When I went into hospital post birth, they could only get hold of a neurologist by phone who recommended they increase my meds by quite a leap - more than my own consultant had done at a time so I ignored this and increasedthem by a smaller amount which my doctor was happy with. I had a natural birth but when pregnant my obstetrician did send me for a foetal heart scan at GOSH. Not entirely sure if this was necessary but all was fine. Good luck with the twinnie scan!
I think now the hormones have settled down I seem a lot better. On another note, I hired a doula to help me post birth so I could get some rest which was really useful.

newy - sorry my mis-type, I'm actually on 200mg a day (100mg morning, and 100mg evening). Have had no probs since I upped the medication from 150mg, and slowly decreased the anti-depressants I was on as I was convinced the two medications were not compatible.

Hi, that's still fairly low. On discharge from hospital, I was also put on frusium for 10 days - absolutely pointless and irrelevant! Are you feeling ok coming off the ads?

Hi - Stopped ads completely about 2 weeks ago and been feeling fine! Everyone comments that I seem back to my "old self", and I personally feel like I have more energy and motivation - which I spose is to be expected as ads are designed to space you out and make you all lethargic!

That's really good! When is your sleep study?

Next week - 13th. I have to go to the hospital to get "wired up" etc. and then I can home to sleep. Have to go back in the morning so they can check the monitors and hopefully give me some results!

Good luck - i remember my first eeg, I was picking cement out of my hair for days afterwards!

Just back from consultant appt. My epi meds are quite low according to latest blood so I have a neuro follow up that they will post to me. Am thinking they may up the drugs but dont wan tot go too high as they poisoned me last time I was high. Be guided by what they say I s'pose? Consultant obst did say he wondered if the amount of drugs I had in my blood atm were actually doing anything at all.

Do you mean you started getting side effects merlypuss? If so, maybe you are on the wrong meds for you. If they are so low as to not do anything and affect you badly when increased then perhaps you need a change to something else altogether. Also, I think some people have low blood meds because of the way they metabolize them - is this what the doctor means? (making the dose in the blood lower than expected for someone on that dose) or is it just low cos they have put you on a low dose. Sometimes they don't really explain things and assume you know what they are talking about. Don't be afraid to grill them - its your brain after all!

I am on Epilim and Phenytoin 100mg and 50mg per day. I was on a lot higher, just epilim, and was sailing along quite hapily and my levels went through the roof. They lowered it and I had a massive seizure, ventilated, the lot. So they combined me with the phenytoin at a higher dose. A few years ago they told me to lower each drug until I fitted so I know these are as low as I can get. I think the neuro said that he didnt want to break what was fixed then and kept me on that level as the consequences were getting worse and worse seizures each time. I know I cant have carbemazepine (sp) as it interferes with my white blood cell count, and thankfully I have been fit free for about 4 years now. Maybe I am one of these people that dont need a high level whilst pregnant as the levels have been low for over a month and it only too me a week to flip when I was lowering them myself?

Mine started when I was 7 after developing encephalitis during very bad case of the mumps but wasn't diagnosed until I was 25 - doctors insisted it was migraine up 'til then Am on Lamictal and it is controlled thankfully.

Hello gibberish!
I saw tiny baby at weekend - she was 6lb 12oz (mine was 9.5 when born) very cute.
Kaz, are you around? How was the sleep study?

Had my final anomoly scan at Kings yesterday and all is good. Just waiting for them to be cooked now to see if all is well.

Hi, I have DS 11 and DD 7 and am on Tegretol.
DS was a surprise, I went straight to GP but ne didn't tell me about the high dose folic acid I had to find it out for myself and go back 2 days later.