Epilepsy.

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Kayleigh

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Ok I have no idea how to use this site but if i'm honest I just need someone to talk to who is going through the same/ simular thing. About four or five years ago (i'm eighteen) I was diagnosed with a mild form of Epilepsy (absence seizures) If you're unfamiliar with these they feel the same as 'tonic clonic seizures' however I didnt loose muscle control (therefore remained stood up) and to other people it looked as though nothing had changed. As I was younger and it was a mild form it didnt bother me (if anything I enjoyed the excuse to get out of school every now and then for hospital check ups). It was thought that I had grown out of them as I was seizure free for two years however towards the end of May 2011 I was at work (thankfully on my lunch break as i'm a waitress and therefore carry hot food and drinks) when I suffered the more serious 'tonic clonic seizure'. I am still working my way up to full dose but in one or two weeks I will be on 200mg of Lamictal a day. Although my family are supportive it has been a few months so I think they feel that I am fine and am dealing with it so are moving on but in reality I am worried about how to deal with the change in seriousness or the epilepsy. I am going to University in about a month where the lifestyle tends to be lack of sleep, lack of food, stress and alcohol. All of which were believed to be contributions to my fit. Also as I have not long turned 18 all of my friends are interested in going out however as I work 6 days a week I dont particularly want to risk it as my fit could have been a lot worse (for example if i was carrying a tray of china and hot drinks) I can either abstain from all of the above contributions which may be impossible or see what works for me as an individual. Hard to do whilst i'm working so much. Ok i'm going to be quiet now I think i'm starting to ramble.
 
Welcome Kayleigh

I've had seizure all my life and I have to admit that I went through the same thing in high school. I did get brave & do some things that didn't work like deciding that I didn't need my medications anymore.

I was always OK going out & having a beer or glass of wine when I'm feeling good otherwise but I do try not to add too many other things that might trigger seizures.

There are a lot of people about your age here that seem to be going through similar issues.

Also, I gave your post its own thread so you can introduce yourself.
 
Hi Kayleigh, welcome to CWE!

It can be tough to feel like you can't participate in all the same activities as your friends. Have a little talk with them to let them know what your health issues are, and what the risks are of overdoing it. Plan activities with them that don't involve alcohol or late nights. Even if those activities are only a few times a month, they will give you something to look forward to without adding to your daily stress.

In general, try and get to bed at the same time every night, and give yourself at least a half-hour break from the computer before going to sleep. Fatigue is the #1 seizure trigger, and regular satisfying snoozing will go along way toward helping you cope with all the other stresses that University brings.

Best,
Nakamova
 
This site is pretty easy to use. Just ask questions about things that are going on with you and you'll get an answer from someone who is usually dealing with the same thing.

There are also different rooms here where you can talk about things that don't even deal with epilepsy. Just look at what the room is used for, like this one was used to introduce yourself, and get in there and ask or answer questons from other people.

It's a great place!
 
Hi Kayleigh
First of all, you're not alone and you will get things under control.
I was diagnosed at 14 with JME and from my own experiences, I can tell you that you can still have fun and do most things but you HAVE to know your limits.
At the moment my epilepsy is completely controlled (Epilim 1000mg per day) and I still drink alcohol, still go out late and unfortunately still get stressed out! lol!
However over the years I have still been very cautious and have come to know my personal limits. As much as I don't like it, it's a fact that I have epilepsy and I have to deal with it.
So I would advise you to first and foremost get your epilepsy controlled as much as possible. It also helps to make your friends aware and try and explain as best as you can as to what can happen and what they can do if you were to have a seizure.
I'm probably in danger of rambling a bit now so I'll stop now but if you want to chat, just message me :)
 
Thanks for all your advice and support, its nice to hear that people have got their epilepsy under control. I was fine about it until about a month ago, I think its only now sinking in that the next 3 years consist of a lifestyle that puts me in a position where im most likely to have a fit. I also know that its going to take time but eventually I will find out my limits. I never really experienced the confusion I got coming around from my fit and I think it scared me a little. I know it is only me and other people understand but I was also a little embaressed. Im also the type of person that keeps my feelings to myself so its probably been building up and has now overwhelmed me. One of the side effects of the medication im on is mood swings which I have only just realised I may be experiencing.
 
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