Epilepsy

Anyone else got it? I've just been diagnosed and im very very scared and cant stop crying!! Any help would be much appreciated!!!

Reply 1

beach surf babe

Just remember that its not the end of the world. One of my friends has it and she takes medication to control it but apart from that leads pretty much a normal life. She has to stay away from strobe lights but thats about it. What have you been told about it?

Reply 2

scaredashell

I worked at a centre for people who had severe epilepsy and learning disabilities as well. I learned that 70% of people can be fully controlled with the right medication, surgery can cure about 30% i think and only 5% is photosensitive meaning that most people who have epilepsy can go in stobe lighting.

Just remember its not the end of the world and it can be controlled. Loads of famous people have epilepsy and manage to live normal lives, elton john..... romeo beckham etc.

If you need help this is the charity i used to work for;

www.epilepsynse.org.uk

there is a forum on there where you can find more people living with epilepsy and they may be able to answer your questions a little better.

Reply 3

Ethereal

Anonymous, PM me if you want to talk. I'll give you my MSN addy. I have Epilepsy caused by a head injury I got playing rugby. It was after my 18th birthday, so I probably understand some of what you're going through just now.

I have some info/helplines I can send you and also a friendly ear :smile:

Reply 4

Anonymous #1

Maybe thats why im upset i havent really been told alot apart from i have to change some of my lifestyle keep a diary of when they happen so they can give me the right medication.

Reply 5

nmt_oli

To start with, I know where your coming from, i was diagnosed 3 years ago now, around my 17th birthday.

It is a lot to come to terms with, i was most upset as a got a car for my 17th then couldnt get even a provisional liscencse for over a year(im a big car fanatic).

The reason you havent been told a lot is because epilepsy is such an obscure condition, it has a lot of variations and in a lot of cases they don't know what causes it. They don't know what causes mine, but i need to book an appointment with my consultant as i think i have some ideas.

What kind of symptoms have you been having? the diary sounds like a good idea. Make sure people close to you, family , friends, teachers ect know how to deal with the situation if you do have a seizure. It will help you relax more.

Once the doctors know whats going on, its liekly it will be controllable by medication. Im on Epilim Chrono, and its fine. Only minor side affect with slowing my metabolism slightly so i have to watch my wieght, and makes me more tired than i used to be. I was on Epilim, but that was much worse with the side effects. Rapid weight gain, and i couldnt concentrate at school at all.

Make sure you keep pestering your GP to get referred to a consultant if you havent already, we decidced to go private with the local NHS consultant as there was a 6 month waiting list, but after that i see him on the NHS. made things easier, even if it did cost a bit.

IVe had various CT scans, MRI scans, and EEG's quite cool really!

Just remember, your not alone! Epilepsy is surprisingly common, its a hidden disability, and people don't like being labeled as disabled. Don't let it get you down, or stop you living your life! there are only few things you cant do (this depends on the type of epilepsy you have).

Oli

Reply 6

Anonymous #2

Hi i don't know how old you are or whether you're a guy or a girl? but i just turned 18 and i'm a girl, i got officially diagnosed with epilepsy not last august but the august before, but i'd been having grand mal seizures (the ones where you lose consciousness and start to shake) since the previous november, i kept going back to my GP but he said he thought i was having nightmares - they only happened 2 or 3 times a month and in my sleep. it was only when my mum heard me having one and called an ambulance anyone actually took any action. I was really upset when i got properly diagnosed as well, even though compared to others my epilepsy isn't that bad, especially because i was 17 and so couldn't learn to drive for what seemed like ages and at first i thought i'd have to change my lifestyle completely, which i know some people do. I've been lucky in that my medication has worked really well and i've now been seizure free for about 17months. Epilepsy can be triggered by all sorts of things as i found out, not just strobe lighting like everyone assumes - strobe lighting doesn't even affect me. For example mine are, or were, triggered by being stressed and overtired, so i now just have to make sure i don't overdo it and when i'm out drinking, not be stupid and binge drink and obviously not even try drugs, because it's just not worth risking the consequences. Like a previous poster said, it's useful for your family and close friends to know and to know what to do in case you have a seizure. I know it must all be a shock for you, and you'll probably be told all this by your consultant, but i hope it just helps you realise you're not alone and a lot of people have it and lead a completely normal life like i do, you wouldn't even know i had it unless i mentioned it. Oh and another thing to take into consideration, if you're a girl and are having/thinking of having sex is contraception. Lots of the medication for epilepsy affects different contraception methods eg. the combined pill, this i wasn't told but luckily i did my own research, as my GP actually prescribed me the pill which i found out with my medication could have caused me to have more seizures or would make the pill ineffective. I also found it helpful and quite reassuring googling epilepsy just so i knew exactly what was going on, or at least more than i was told/could take in when i saw my consultant/GP. I hope everything works out well for you.

Reply 7

michelle87

Hey don't be afraid and don't worry, although this has come as a massive shock to you.

I was diagnosed when I was 4 due to meningitis, but have had surgery so no longer have tonic clonic seizures (the big fits), I only get a taste in my mouth, have never had any time out from school and am at uni now, so don’t give up on yourself.

Reply 8

Ethereal

This might be of use to any of you...

http://www.thestudentroom.co.uk/showthread.php?t=225080

Reply 9

jo131278

Hi,

Yep, i've had it since I was 9/10 yrs old. I have both Absence and over the past 5 years full on seizures. Mine is very, very uncontrolled. I was on Epilim when I was younger but I was like a complete zombie and gained so, so, so much weight its untrue... I hate epilim :frown:

I am now on Keppra and Lamictal but it still doesn't control it.
However, I suffer badly from anxiety and depression so i'm caught up in a bad circle.
I know people who are completely controlled and I hope you get to this too :smile:

try to get regular sleep, don't get anxious/stress, stay away from alcohol etc. etc. etc. all boring and I do the complete opposite hence why my situations not good.
I have a Epilepsy Nurse Specialist who I can ring and talk to with any problems (office hours only)!!! Try and see if there is one in your area- ask your GP as they really are invaluable. I have one here because I am very close to the David Lewis Centre (a national centre for Epilepsy)- in fact i was under their care when I was younger.

Let me know if you need any more info or want my msn

jo.x

Reply 10

Anonymous #1

Yep ive been put in contact with an epilepsy nurse and hopefully sometime soon im going to sort of out some kind of medication. I hate all this waiting. Its like heres a bombshell and now u have 2 wait till we decide to do something else. Its still scary though i had one in boots yesterday and i was on my own. People dont seem to understand im not bieng awkward and i cant help it. Like when i got fired from work because of it!! Ive suffered from depression and i have self harmed in the past so i guess im caught in the same kind of circle u r. One gp explained it that it happens then u work urself up about something then it happens more etc etc. Suppose thats what happening but i wish i had some kind of idea what was gonna happen next. Im really confused and scared.

However one positive my uni have been fantastic about everything. I've had 2 take a year off so now i cant wait 2 get rid of all this so that i can enjoy my gap year!!!