Epilepsy - such a bitch!

[Emmielu]

I cannot stress how much I hate being epileptic. I have been for 5 1/2 years when I fell pregnant with DD. Fits haven't been controlled & just when I think they are BAM! Something triggers them. I'm on anti-ep medication and the depo jab as mine is catamenial epilepsy (hormonal). Tuesday morning, my mum saved my life. I had a fit in the bath on holiday. Mum broke the lock & said she found me pale with my whole body under the water, blood pouring out of my mouth & she couldn't get me out while I was fitting. She pulled the plug & when I stopped she pulled me out, got me dressed & laid me down in recovery position so the blood could finish dripping from my mouth. When I came round I had a towel in my mouth & one heck of a headache. I couldn't feel my legs. I laid there floating in & out of knowing where I was. I cried. Solid for 3 hours. Just laid there & cried. Eventually I got up with help from my dad & had DD sat waiting for me in the living room with a drink of water & a blanket for me. She's not scared by my fits anymore. She was concerned at how swollen my tongue is & the fact I couldn't take her swimming for the rest of the week.

I hate it. I hate the aftermath. I hate the disappointment of not going a year without a fit. I hate feeling so helpless. What's worse, I'm too scared to think about having more kids cause it'll trigger more fits. I have to re consider moving out from my parents house cause I need someone there incase I fit again on my own.

[Stitchthis]

I can't say I have been there but I recognise your anger and frustration. Talk about it. To anyone. Take care.

[MissusL]

My daughter and sister in law are both epileptic, I understand your frustration. My daughter had two seizures about a fortnight ago, after no seizures since last March, really thought we had cracked it this time. My sister in law was uncontrolled for years, but has had her driving licence back since last May - so there can be light at the end of the tunnel.

Have you looked into the forums on Epilepsy Action? I have found their support to be really useful and there are plenty of people on there in the same position as you who really know first hand what you are dealing with.

Also see if you can find a local epilepsy support group, we belong to one in Swindon and their support has been invaluable to us.

It sounds like you have very supportive parents, and that is also very important, although (and I may be talking out of turn here!) they probably fuss too much. My daughter gets very frustrated with me because every time I hear a bang from her bedroom I'm halfway up the stairs to make sure she's ok!

My sister in law says that when she comes round from a seizure the first thing she thinks is shit it's happened again, and feels so low and depressed. She has had some awful seizures, fallen down stairs so many times and has a badly scarred tongue as well.

As for having more children or moving out of home, just take one step at a time. My sis in law has resigned herself to only having one child, and just concentrates on making sure that she keeps herself as well as she can for him. I know the last thing she wanted was an only child, as she is an only child herself, but her health is far more important.

I hope this has helped - I do tend to go on a bit too much!

[mopbucket]

My niece (aged 3) has just started on meds morning and night after having a few fits and a stroke the meds are making her morr wobbly than ever she cant use her left hand side properly anyway now but can stand but this has knocked her for 6. She is with me today i normally have her tue/wed abd thurs but i feel very worried she just wants to sleep

[MrsHende]

It's just a dreadful illness Emmielu, I hate it too.

My DH has had epilepsy for 20 years, since he was 15. He has good and bad phases. He changed meds about 6 months ago and has had no seizures since then, but is so tired he can barely function.

We have a gorgeous newborn baby girl and he is terrified that she might have epilepsy (although his is not genetic so she has no more chance of having it than anyone else).

It's a horrible, horrible illness.

[iscream]

I am sorry, I know it is tough to have epilepsy, you feel helpless.
I do have a suggestion for you, if you don't mind. When you have a bath, don't lock the door, and tie the plug to your big toe or around your ankle. If you have a seizure, chances are good you will pull the plug and the water will drain out.
It is great your mother was there to save you, you are really lucky that you have the option of living there. Hope you feel better soon. Do you seize more during ovulation, or is it totally unpredictable?