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Calling all Epileptic Mums(5 Posts)
I have a baby girl 5 months and I suffer with nocturnal szrs how do you all cope on a day to day basis with raising a child and managing szrs????
Hi Jo--I also have a baby girl 5 months, and I've had seizures in the past. Haven't had any for years, but understand how scary it can be. I worried about it a lot, especially when she was waking up all the time at night. (At the time mine were linked to sleep deprivation!) I would say get as much help as you possibly can... Which medication do you take?
I take Keppra, Topiramate and Clobazam I am good most of the time I do all the sensible things like change her on the floor, never bath her alone, never take her swimming alone - but I agree the 1st 3 months were really hard and I was having szrs at that time but I was not looking after myself properly not eating and drinking enough I don't think any new mum does but I do now its just the morning after you know how you feel really fuzzy headed and horrible its hard then to be the sole career not to bad at the moment but will be harder as she gets older. what medication do you take and do you drive??
I drive, but not in the UK (I'm American and it would be really scary--must take lessons at some point.) I take Lamotrigine, have for almost 10 years and thus far never had a problem unless I missed a dose or my hormone levels changed (see below). I used to have seizures (have had about 10 total, over 12 years)only in the first 45 minutes after I woke up in the morning, almost always when I stayed up really late. It's a type of seizure disorder linked to disruptive sleep patterns, so you can imagine how scared I was when I knew I'd be waking up every three hours. But I haven't yet had one, though I am still very careful; if I feel really really tired when I first wake up I put dd in her chair and feed her her bottle that way, in case I fell. (Stopped breastfeeding at 3 mos.) I don't know much about nocturnal seizures, but I imagine there are some similiarities, and a neurologist in New York told me that that going to bed and waking up at a similiar time every day makes a huge difference. I.e., Don't stay up until 1AM one night and conk out at 9PM the next. I of course do this all the time, but getting your body into a rhythm does make sense, and hopefully having a little toddler who sleeps regular hours will make that easy!
I know that horrible fuzzy feeling--it has always knocked me out for a whole day--and it must be so hard to push through it. Are you able to have someone come over for a few hours to give you a rest? One thing that I discovered last time I had one was that if I let myself lie down really, really still for about 10 minutes and took deep breaths, I felt a little better. I think it gives the muscles a chance to relax after all that freaking out.
Also, I don't know your history or about the drugs you're taking, but if your seizures have gotten worse lately, or you feel more side effects from the drugs, it may be due to hormones. I had a seizure once because I went off and then back on the Pill, and the level of the drug in my body shot up and then dropped. IME they seem to pay less attention to the levels of the drugs in your body in the UK, but it's always made a huge difference for me, and in the US they watched it really closely. You can take the same amount of medication, and yet your body metabolizes it differently so it can be less effective. Pregnancy, breastfeeding, etc. hormones can wreak havoc, so if you don't already have bloodwork done often maybe ask your GP.
Also, if you're worried about having seizures during the day while you're with your dd, I read an article about dogs that can help alert you to a seizure: http://www.epilepsynse.org.uk/PAGES/whatsnew/review/winter02_1.cfm It sounds weird, but if you knew you'd have time to set your baby somewhere safely if you were going to have a seizure, it would ease your mind... I imagine you'd have to have a lot of seizures during waking hours before they would consider you, however...
Thanks for that my szrs usually come the week before my period which is why last week was a bad week but touch wood this week has been good. But yes, I agree I always try and be fairly consistent with bed times partly because i am tired and partly because I never take for granted that she will sleep through the night!!!
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