Living with Epilepsy

[FeelingOld]

My niece's dh who is 24 had a fit a few weeks ago (she lives 145 miles away and we were visiting for the weekend) and he had another one a couple of weeks later and has now been to see consultant/had tests done/got results back and has been diagnosed with epilepsy and is on medication (but only for 2 weeks)

She is beside herself with worry, hates to go out and leave him alone etc. I have tried to reassure her that thousands of people live normal lives daily with epilepsy and that once the correct medication is prescribed (can sometimes take time to find correct dosage etc) there is no reason why an otherwise fit and healthy young bloke should not be able to carry on as normal (well few exceptions such as flashing lights, driving for the moment etc).

I am going to see her this weekend coming to try to calm her before she makes herself ill and would like to be able to give her reassurance that what I have been telling her is true.
I have a friend who has epilepsy, has a high profile job and has children and had known her for about 3 years before I knew she had epilepsy and she lives her life no differently to the rest of us in our group of friends. I would like to hear from anyone else who has any experiences.
Thanks.

[FeelingOld]

anyone?

[rabbitrabbit]

Hello, really sorry that your niece and her dh are going thorugh this. I know exactly how she feels as my dh was diagnosed about 5 years ago also.
Epilepsy Action is a good website for information. You can also join and receive newsletters etc.

My dh is now on permanent medication. He had his first fit (with me) when we were on holiday in India and we went to the GP when we got back; then went through the round of specialists etc. Is her dh on meds for 2wks to see how he goes on that specific medication?
I know that my dh couldn't drive until he had a year free of fits, but he also had to be on medication. Though I don't know if that's dependant on the type of epilepsy you have.

He's doing fine now. No real problems other than the fact that he sometimes forgets his tablets! Grrrr

Hope things work out okay for them. I didn't really appreciate how much of a stigma there was still attached to epilepsy until I had first hand experience of it. I think it's sometimes because people only really experience dramatic episodes of it on, for example, the telly (grand mal fits where people fall to the floor etc) but that's rarely happened for us. I wish them all the best of luck, it really does fade into the background when you start to control it. I hope that happens soon for them x

[rabbitrabbit]

Also-my dh is on Tegretol Retard, two daily. What is your niece's dh on?

[FeelingOld]

Thanks for replying.
He has been on his medication for 2 weeks and goes back to see consultant in another 2 weeks to see how things are (has to go to gp sooner if has another fit or feels medication not suiting him), dont know name of medication I am afraid.
I have tried to tell my niece that in time she will learn to deal with this and will be able to relax (1st fit happened at 2am so now not sleeping very well as she wakes at the slightest noise or movement).
He obviously can not drive either and day to day this is fine as he walks to work but cos we live so far away niece is not looking forward to having to do all of the driving for visits etc but this too will come to an end in hopefully about 11 months if his medication is correct.
Strangely her dh is not too phased by it all and is otherwise very well and is dealing with it all ok.
I will pass on the details of the website too.

Thanks for sharing your experience and I hope your dh remains well.

[iPodthereforiPoor]

my XP had nocturnal epilepsy and for ages after the first fit i saw him have I couldn't sleep. I was waking him up everytime he jumped in his sleep to check he wasn't having a fit.

Even now over a year since we split I still have flashbacks to his fits. My dad was shaking his head one day and I got histerical because it remeinded me of a fit - he was onlyplaying with my DS gong" no,no no no" but I was in floods of tears.

Remindyour neice that she has every right to feel scared about this and to ask for help if she needs it. It can be so stressful. Hope it all goes well for them.

[edam]

I think it's scarier for the people around you than it is for the person with epilepsy, tbh.

I developed noctural epilepsy out of the blue at age 29. No cause ever found. First going on the drugs was hard, really hit me, but since getting dose sorted out everything is fine. Doesn't really affect me day to day and no-one knows unless I've chosen to tell them. FWIW epliepsy didn't stop me holding down a v. high powered job and having a family. Only thing is that over-tiredness can make a fit more likely.

Rules on driving for nocturnal epilepsy are more relaxed than for other forms (because you aren't asleep when you drive) but think you have to be stable for some time. Check the DVLA website.

[FeelingOld]

Thanks everyone, my niece is the kind of person who doesn't cope well with hospitals, blood, illness etc very well and cos she is very young (only 23) it is even harder for her. I think if she lived nearer to us and we could support her a bit more she might not be so anxious.
Your posts have been very positive and when I go to see her at the weekend I will log her on to mumsnet and show her this thread.

[edam]

Glad to be of help FO. Don't know if your nephew in law feels same way I did, but I did think (at first) my dh was making a bit of a fuss about nothing because I was asleep adn so didn't realise what had happened. And still hate people worrying about it IYSWIM.