Dealing with epilepsy

[3eyes1vision]

Since a young child i have had epilepsy I don't remember what age exactly i was diagnosed with it at but it has been a part of my life for over 10 years. When i was younger having a seizure never seemed like that much of a big deal to me while they were serious cause for concern to my parents and my neurologist. I suffer from grand mal seizure and it always seems to happen once a year every summertime. The seizures have always happened in my sleep and i have always been lucky that someone was always around to call a paramedic whenever i have one. Just last summer i had probably the worst seizure i have ever experienced and it really frightened me because for the first time in my life it was happening while i was awake and i started convulsing and i smelt sum weird smell and felt really weird i don't know how to explain it. All i remember was yelling to my dad HELP ME I THINK IM HAVING A SEIZURE and then the next second im waking up on the ground yelling at the paramedics WHO THE FUCK ARE YOU WHATS GOING ON WHERE AM I? I had blacked out and hit my head pretty hard i was covered in blood. After getting out of the hospital in complete pain and dizzyness i have never felt the same...I'm always worried its going to happen again its been months and i almost feel like im waaay more prone to having a seizure then i was before, i feel alot more photosensitive and i get dizzy easily. I can't take it anymore its destroying my sanity i feel sometimes like i'm the only one out there and its such an embarrassing thing all throughout highschool i was picked on for being epileptic and im still very self concious about it and i still keep it a secret from everyone. What worries most is there are times i feel i could have a seizure and no one would be around to help me. Everytime it has happened an angel has been watching my back and someone has always been there to save me. But what about when it happens and no one is around. I don't even know why im posting this i guess im looking for anyone out there who shares my pain as i have no one to relate to when it comes to my epilepsy. i guess im posting this because i really do feel alone in this world. I want to hear other peoples stories i guess i really just want to know that im not the only one. Im worried that my epilepsy is going to kill me one day i guess im looking for encouragement above all...

 

[Belinda1961]

I've never figured why others are self conscious about having epilepsy?
I've had epilepsy since I was 2 years old and my seizures got worse as I got older.I ended up the E/R plenty of times because of seizures when I needed stitches or staples growing up or as an adult. You should tell ppl your around the most or close friends about your epilepsy so they know what to do. Your seizures are not something to be ashamed of.
It's definitely nothing to be ashamed of.
I've always told ppl about my epilepsy and if I had a seizure I had a seizure that's life.
Belinda

 

[Krista2882]

Have you ever been on medication? You said they only happen in the summer- can your doctor start putting you on meds just for the summer if you don't want to be on them all the time?

And I can relate to having a seizure generalize while you're awake. I was having simple partial seizures since I was 12. I'm 29 now. But when I was 19, they were getting a lot worse, and luckily I was in bed when this happened, but a simple partial seizure generalized into a gran mal. It was the scariest thing that ever happened. My body just like, folded on itself. I curled up into a ball, and I couldn't breathe. I tried to scream but I couldn't do anything. The next thing I remember was waking up about 30 minutes later with a hole bitten through my tongue. It was the scariest experience of my life and it haunted me for years. It took about 8 years for my meds to be stabilized and get my seizures under control. So I'm not living in constant fear anymore, but I know how you feel- after I had that experience, I went into a depression that lasted months, and I was just so scared that it would happen again. Thankfully it hasn't. :woot:

 

[momof3boys]

Im sorry you're feeling this way. Ive had epilepsy my whole life. Ive grown up only knowing this is who I am, and Im not ashamed of having Epilepsy. Its something I have to live with and accept for who I am. Ive had people tell me there is always a possibility of someday outgrowing the seizures, so I look forward to maybe seeing that day come. But in the meantime, I take each day, day by day. Are you on medication to help treat your seizures? If you need anyone to talk to, please dont hesitate on asking anyone here. Were all here for each other!

 

[Belinda1961]

heat&humidity can be a major factor for some people's seizures.To control one's seizures you need to be on epilepsy drugs all the time.

 

[slayersophie]

Since a young child i have had epilepsy I don't remember what age exactly i was diagnosed with it at but it has been a part of my life for over 10 years. When i was younger having a seizure never seemed like that much of a big deal to me while they were serious cause for concern to my parents and my neurologist. I suffer from grand mal seizure and it always seems to happen once a year every summertime. The seizures have always happened in my sleep and i have always been lucky that someone was always around to call a paramedic whenever i have one. Just last summer i had probably the worst seizure i have ever experienced and it really frightened me because for the first time in my life it was happening while i was awake and i started convulsing and i smelt sum weird smell and felt really weird i don't know how to explain it. All i remember was yelling to my dad HELP ME I THINK IM HAVING A SEIZURE and then the next second im waking up on the ground yelling at the paramedics WHO THE FUCK ARE YOU WHATS GOING ON WHERE AM I? I had blacked out and hit my head pretty hard i was covered in blood. After getting out of the hospital in complete pain and dizzyness i have never felt the same...I'm always worried its going to happen again its been months and i almost feel like im waaay more prone to having a seizure then i was before, i feel alot more photosensitive and i get dizzy easily. I can't take it anymore its destroying my sanity i feel sometimes like i'm the only one out there and its such an embarrassing thing all throughout highschool i was picked on for being epileptic and im still very self concious about it and i still keep it a secret from everyone. What worries most is there are times i feel i could have a seizure and no one would be around to help me. Everytime it has happened an angel has been watching my back and someone has always been there to save me. But what about when it happens and no one is around. I don't even know why im posting this i guess im looking for anyone out there who shares my pain as i have no one to relate to when it comes to my epilepsy. i guess im posting this because i really do feel alone in this world. I want to hear other peoples stories i guess i really just want to know that im not the only one. Im worried that my epilepsy is going to kill me one day i guess im looking for encouragement above all...

Youre definitely not alone, as you can tell by this community of people. Youre not alone in feeling the way you do either. The best way to arm yourself and gain confidence is to do whats in your power to gain control over your life and your epilepsy. The only way to do that is to see a doctor, figure out the right meds, research and educate yourself. Arm yourself with knowledge and the fear will dissapear. The same goes for those around you, the more you help them to become educated , the safer you will be and the more those around you will know themselves. There is no reason to be embarrased. It is what it is and and you can either let it run your life or you can take charge and get your life back. Its not an easy road and really, my journey has just started myself...but you can do this. Dont let it run your life. take it back. Go to the Doctor, Get educated, Educate others and live again. Good luck!!