hi,i`m from london,england

[sonny jim]

hi,i`m new on here,i`m from london,england,
i thought i`d check this forum out cos in uk there just is`nt anything to give me any support or information about dealing with my epilepsy and looking after my 3 children(8,5,2).
i have only been diag in nov with left temp lobe epilepsy,after a really bad grand mal,i was in hosp for 5 days(very grime)with not one person,doc or other wize knowing what was wrong with me.
i had to wait 3 months to see a neuroligesy(terrible spelling),to tell me in a 5 min consult that i had epilespy,my whole life has been turned upside down.
the 1st meds they put me on were really bad and increased my sizeures(every day nearly),lamotrigine,now i`m on carbermazepine retard(sorry about the spelling)i am much better,about a sizeure every 2 weeks,but it really wipes me out and i`m so tired,
i feel so guilty my kids are really suffering,you always hear about the people with epilepsy,but what about everyone around them,
my daughter(,has to care for me and her bro and sis,when i have a sizeure,she is so amazing,she puts me in recovery position,puts the kids in their rooms and tv on,then checks me again then goes for a neighbour or rings an ambulance.her life is maddness at the moment,and i can`t do a thing about it.
i suppose i just need someone to know where i`m coming from,cos here you would thing i`ve grown another head. poeple without epilepy just don`t have clue what we have to go through.

[epileric]

Good to have you here. I'm thoroughly impressed by your daughter, she sounds extremely responsible for someone her age. I'm also on tegretol, it seems to have the least side-effects & be the most effective for me. You should check out the list of alternative therapies, maybe one of them will help reduce your dosage or even get you to the point you can stop taking it. http://www.coping-with-epilepsy.com/...ive-treatments

Meanwhile get comfortable, look around & see what we got. I'm sure some of your neighbors from the UK will be by to say "hi" soon.

[Crazy Monkey]

Hiya Sonny Jim

Welcome to CWE

I am one of your English neighbours that Eric mentioned. I have had epilepsy since I was a kid, I have had a hunt around in the UK, but I have never found any local support networks, which is when I turned to the internet and came across CWE. I hope you find the website as useful as I have

Crazy Monkey

[nana1]

Hi sonny jim

Welcome to CWE ! I am so glad your daughter is there to help you. She seems to know what to do for you (that is great).

There are many rooms on here, people here to talk to. Ask questions, Just go and vent if needed. I am sure you will like it here.

By the way would love to come out there to see England (london) sometime. I have had that as a dream since i have been small

[skillefer]

hi SJ! Welcome to CWE. your daughter sounds like a phenomenal young lady. Kids are resilient. Just make sure that they know what's going on. Glad to hear that your med is working for you....but your dosage might need to be worked on if your still having seizures every two weeks. Either that, or your neurologist may need to add on a different med. Do you know what is triggering your seizures? Lack of sleep, stress, hormone shifts, poor diet, flickering lights...all of these can trigger seizures.

[nick]

hi sorry to here no support. Ilive in north england and we have really good support. I had a cerable bleed in sept 2008 and have had tonic clonic seizures which are gradualy getting less aggresive. using lamotragine . Luckly, have no side effects. your kids sound just fantastic.i have a wonderful lady in my life, but we both suffer from awful flash backs. you are so right about no one who has never come into close contact, or had to deal with epilepsy how very isolated and lonely it can be. we are here for you. nick and fi

[Overproof]

...hi sorry to here no support. Ilive in north england and we have really good support...

Agreed. Especially here in Leeds, we have a local charity called Epilepsy Action (am I allowed to post links here?)

[Dutch mom]

Welcome on CWE Sonny Jim and Overproof,

Agreed. Especially here in Leeds, we have a local charity called Epilepsy Action (am I allowed to post links here?)

Party Crashers - Why there is a restriction on signatures, images and links
http://www.coping-with-epilepsy.com/...es-links-1759/

You can post your link without www. and one of the moderators can fix it later.

[Loopy Lou]

Hello! I'm quite new here too, and i had problems finding support too. I googled "epilepsy advice forums" and this one came up!

It's a pretty friendly place.

You're right, a lot of people don't understand what it's like. I'm having a load of problems at work especially. And this is a company where epilepsy training is required as basic training! They can't understand why i'm tired all the time, and people are getting annoyed that i can't do long shifts and work weekends anymore.

Hey-ho, i think i'm slowly getting through.

Hope you enjoy the site! I've found it pretty informative