Email helpline

I emailed the helpline with a question a week ago. Earlier that day I had tried to phone but bouldn't get any response. Can you tell me where I can get advice.

Hi!

My 10 week old grandson is in hospital having tests. He has started having very occasional "absences" where his eyes go to one side and he's " not there" for about 30 seconds. There is no stiffness or floppiness but it's all very scary. His mother has epilepsy . Any advice/feedback/thoughts would be much appreciated. If it doesn't turn out to be epilepsy what on earth do you think it could be?

Many thanks

Barbara

My 9 year old son's friend was just diagnosed (finally), and I am looking for advice on how to explain this to him. He is kind of nervous around him now and is avoiding him, which is not what I want. Any suggestions?

Barb

Hi,
My two year old son has had two seizures, and after working with the doctors we have decided to put him on medication. We have had him sleeping with us ever since the seizures and we are having a lot of anxiety about having him go back to his bed since he will start the medication. Do you have any suggestions, or monitors that you'd recommend? Thank you for the support.
Sincerely,
Jennifer

I have seizures in my sleep (about 2 a month) and am interested in joining the police. i understand that a few years ago the rules changed in that people with epilepsy can join the police and fire service. does anyone have any experience on joining either of these services with active epilepsy?

Re: Ms. Biggs.

Your Son seems to be experiencing the same denial I do, whilst I acknowledge that I have Epilepsy, I don't accept it, not even after nearly 11 years, (my first seizure was age 15 years and 2 months, back in May 1999).

At 15-17, boys are becoming men and this is supposed to be when we get our independance, and whilst I can't speak for anyone buy myself, that Saturday morning in May 1999 was when I felt that I had that independance taken away from me, before I'd even got it.

For me, I hate having the medication increased too, I sometimes now consider the side-effects of the medication worse than the seizures themselves.
Also, it's hard for me, even after all this time to tell people they are as bad as I perceive them to be, and I just keep it all inside, I feel that to show the true extent of the damage it has done to me would be a sign of weakness.

Through those reasons and more, people the age of your Son, and myself when I started having seizures. we want to make our own ways and fight our own battles.
I don't see accepting Epilepsy as half the battle, because if I didn't accept something, I did something about it, I didn't want to end up a 9-5 drosser, so I studied hard at high-school and college, and your Son may feel the same way, that he just doesn't want to accept it, but do something about it.
What would help me deal with my Epilepsy, would be if I had a reason, something I'd done in my life, an injury perhaps, a genetic defect, anything to explain why I am the way I am.

Also, I do feel like a walking freak show, I've been arrested and given a written caution for assault by some cops that failed to provide me with proper medical attention, and mocked by other cops, as well as lost the only job I ever had through disability discrimination, so chances are your Son has or will be discriminated because of it, even though the Disability Discrimination Law was put in place to prevent such a thing, (if a employer gives an excuse other than a person's disability, they can't be prosecuted, an example of this would be when I went for a job as a cashier at a bank, and was told I wasn't qualified when they found out I had Epilepsy....keeping in mind that with 15x GCSE's, and 6x A2's, I was qualified to be their bosses boss, it was pretty evident).

And then you get the people who say, "oh, my Brother's, Nephew's, Uncle's, Father's, Next-door neighbour's hamster has Epilepsy", which to me is an insult, because none of those people have lived my life or have my goals in lfie, and your Son may feel the same way, that some goals, such as driving, perhaps getting a certain job or whatever, are now unobtainable, and this is something else that I can't accept, even after allthis time.

As my Epilepsy has got more severe over the past 11 years, as have the effects, and I have constant mood swings too.
During one of the types of seizures I have, I maintain a state of consciousness, and once got so paranoid during one of these aggressive seizures, that I swore at my Mother's Guide Dog for half an hour, threatening to kill him because I was convinced he was looking at me funny, and mocking me).

Now obviously I'm short tempered during the day, and feel like a prisoner of something that is slowly destroying who I was as a person into something even I don't like, but the battle is not just dealing with the seizures, but your identity as an Epileptic, for example, I'm guessing your Son, like most teenagers wanted to drive, unfortunatly that's out the window now for a minimum of 1 year from any given seizure.

I'm guessing your Son is coming up to his GCSE's, advise him about learning support programs at his local school, despite being a straight-A student, I had myself placed on these so I could get 25% extra time during my exams, breaks whenever I needed them, and also I could have the exams printed on any colour paper I wanted, with any colour ink.

Try to just be like a normal family, perhaps watch a DVD or play a board-game, if you watch a film, that's 2 hours that your Son's attention is taken away from the Epilepsy, and it's something my Mother does to help me.
I also attend the gym regularly too and do quite a bit of weight training, the adrenaline rush helps ease my depression for a few hours, and keeps my body conditioned and toned to minimise the risk of injury during a seizure, (be sure to consult your Doctor's first though), I also do Yoga to help ease the anger.

I often feel that my Doctor's aren't telling me everything either, but I am extremely paranoid after all these years, and a lot of it is because I'm losing myself to the Epilepsy now, after 11 years, I'm just fed-up with fighting it, and sometimes feel best to let the Epilepsy win.
I hope your Son never reaches the dark depths that I now inhabit, but either way, I'd advise at least discussing the possibility of counsilling or psychiatric appointments with your Son to let him just vent out, (remind him that anything he says to them is kept in confidence, and that not even you're allowed to know what was said without his consent).

Myself; I find psychiatrist sessions more important than counsilling, as I feel they don't judge me and analyise me, but every Epileptic has their own way of dealing with things.

Finally, I'd be lying if I said I've never contemplated suicide, so just be sure to keep an eye out for anything that may indicate this, I suggest not to get too close to the subject, or to openly suggest talking about it, but there may be times when your Son needs a shoulder to cry on, and sometimes what helps the most isn't the medication or the Doctors, it's just having someone who is there to listen to you, my Mother's always done that for me.

I wish you and your Son all the best.