feeling alone

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so i'm new to this but pretty much has anyone just felt alone and powerless with their epilepsy? I was diagnosed when I was five but I grew out of it in 8th grade. I'm 22 now and my partial seizures have returned out of nowhere and they come from 1 maybe 2 a month when i was a kid to 5-6 times a day for the past 2 weeks. i'm not sure if it's because my doctor changed my medication from dilantin to vimpat (they put me back on meds after a had a seizure during finals but I was hoping that was because I only had 2 hours of sleep a night for 2 weeks) so my body is getting used to the change in medication or what but i've never had seizures this frequent before. i'm not looking for sympathy, I just want someone who understands, my mom makes it sound like im dying from cancer anytime anytime she talks about it and the few friends that do know about it don't really understand since they never experienced it before even though I know they mean well and try to understand it can get a little frustrating when they ask if i'm having a seizure every time I drop silverware or in deep thought. but anyway a little off topic, is anybody fully conscious while they have seizures and you're aware of whats happening, it's difficult to move but you still can move and talk but you're just in i don't want to say pain but extreme discomfort. also i know im asking a lot of off topic questions but if anyone can tell me how to deal with being ashamed of their epilepsy that would be very helpful. The first time my best friend and girlfriend saw me have a seizure (which was like 2-3 months ago) they acted and looked at me completely differently than normal and it took a week or two until they acted normal and honestly i never want anyone to look at me how they did it was like a mixture of fear, guilt, and sympathy and i've just been hiding my seizures if i'm out in public because of it. thanks for any responses and advice given.

Comments

A lot of your problem is your

Submitted by just_joe on Thu, 2017-07-06 - 17:47

A lot of your problem is your letting your epilepsy control you rather then you controlling your epilepsy.Ashamed of what??? Having epilepsy or the fact that you have it?? Would you rather have a heart condition and see the looks on your friends eyes if and when you have a heart attack?? Epilepsy is a handicap that can not be seen. Your friends need to be taught what to do if you have a seizure while around them. I taught friends what to do and look for. It helped one because his sister started to have a seizure. Learn more and do understand that people will ask questions. You may not like them but they are also trying to understand more since they are around you and want to help youit can get a little frustrating ---- You have a computer and can find information in a matter of seconds. Try living and dealing with it like I did. There were no computers back in the 60's. Seizures were seizures. We learned how to deal with them and friends and parents and still get our studying done. I got a maximum of 5-6 hours of sleep as night. I Delivered papers and had to be home and change clothes before the bus got there. Yes frustrating can land there. But I was just like the guy next door. How knows he may have diabetes. They too have their issues to deal with.It is your job to learn how to live and deal with your epilepsy and teach those around you how to understand it is just a blind disease. The only time your friends know you have it is when you have a seizure while they are around.

I'm sorry to hear all this is

Submitted by buckeyes588 on Thu, 2017-07-06 - 22:53

I'm sorry to hear all this is happening. I can't imagine going so long with out any and all of a sudden they are back in your life. All of your thoughts/stress/disappointment/feelings in general are absolutely valid. Living with this condition is so hard because coming into any form of acceptance with it can literally change on a daily basis with the change in what your brain may decide to do. And having no control over who gets to find out at any given time is frustrating as hell. I can honestly tell you after 15 years of living with Epilepsy I haven't come into a perfect level of acceptance to it all. But I have finally decided to face that truth that this disorder can be really hard to live with and that it is ok to give yourself a bit of compassion during the times that it is. As hard as it can be, maybe consider having a talk with some of your closest friends about it. It doesn't have to be any serious formal thing, but just bring it up sometime. If they know the basics about your seizures, if there's anything they need to do, what's best to do when you're out of the seizure (if they need to ask you if you're ok, if you'd rather them not make a fuss over it, etc.). That might make things a little easier. And just feeling comfortable talking about it a bit may make the situation a bit less tense. I can't give you too much advice on your mom, because I have the same problem. A mom's job is to worry over you forever. :) As far as your question about the seizure and still being conscious- I have those all the time. My simple partial seizures consist of me just being filled with this feeling of darkness/fear/dread. I still see everything around me and can compose myself enough to hide it. The only thing I can't do is talk. It's the most bizarre feeling. Almost as if you're in between two worlds at the same time. Just know there are plenty of people here, and probably in your life, who want to support you!! And I hope your doctor can get your meds figured out a bit more. Take care, Kelly

I'm sorry to hear all this is happening. I can't imagine going so long with out any and all of a sudden they are back in your life. All of your thoughts/stress/disappointment/feelings in general are absolutely valid. Living with this condition is so hard because coming into any form of acceptance with it can literally change on a daily basis with the change in what your brain may decide to do. And having no control over who gets to find out at any given time is frustrating as hell. I can honestly tell you after 15 years of living with Epilepsy I haven't come into a perfect level of acceptance to it all. But I have finally decided to face that truth that this disorder can be really hard to live with and that it is ok to give yourself a bit of compassion during the times that it is. As hard as it can be, maybe consider having a talk with some of your closest friends about it. It doesn't have to be any serious formal thing, but just bring it up sometime. If they know the basics about your seizures, if there's anything they need to do, what's best to do when you're out of the seizure (if they need to ask you if you're ok, if you'd rather them not make a fuss over it, etc.). That might make things a little easier. And just feeling comfortable talking about it a bit may make the situation a bit less tense. I can't give you too much advice on your mom, because I have the same problem. A mom's job is to worry over you forever. :)  As far as your question about the seizure and still being conscious- I have those all the time. My simple partial seizures consist of me just being filled with this feeling of darkness/fear/dread. I still see everything around me and can compose myself enough to hide it. The only thing I can't do is talk. It's the most bizarre feeling. Almost as if you're in between two worlds at the same time. Just know there are plenty of people here, and probably in your life, who want to support you!! And I hope your doctor can get your meds figured out a bit more. Take care, Kelly

I'm sorry to hear all this is happening. I can't imagine going so long with out any and all of a sudden they are back in your life. All of your thoughts/stress/disappointment/feelings in general are absolutely valid. Living with this condition is so hard because coming into any form of acceptance with it can literally change on a daily basis with the change in what your brain may decide to do. And having no control over who gets to find out at any given time is frustrating as hell. I can honestly tell you after 15 years of living with Epilepsy I haven't come into a perfect level of acceptance to it all. But I have finally decided to face that truth that this disorder can be really hard to live with and that it is ok to give yourself a bit of compassion during the times that it is. As hard as it can be, maybe consider having a talk with some of your closest friends about it. It doesn't have to be any serious formal thing, but just bring it up sometime. If they know the basics about your seizures, if there's anything they need to do, what's best to do when you're out of the seizure (if they need to ask you if you're ok, if you'd rather them not make a fuss over it, etc.). That might make things a little easier. And just feeling comfortable talking about it a bit may make the situation a bit less tense. I can't give you too much advice on your mom, because I have the same problem. A mom's job is to worry over you forever. :) As far as your question about the seizure and still being conscious- I have those all the time. My simple partial seizures consist of me just being filled with this feeling of darkness/fear/dread. I still see everything around me and can compose myself enough to hide it. The only thing I can't do is talk. It's the most bizarre feeling. Almost as if you're in between two worlds at the same time. Just know there are plenty of people here, and probably in your life, who want to support you!! And I hope your doctor can get your meds figured out a bit more. Take care, Kelly

I hear you. I've been where

Submitted by Becca86 on Mon, 2017-07-24 - 18:05

I hear you. I've been where you are. I just had a seizure at work today and felt frustrated because I hoped they would never see that side of me. I've gone through six drugs, now trying number seven. But...Epilepsy is not who you are, it's just part of your life. You are a person with a problem. Everyone can be described that way.Do you have limitations? Yes. That's okay!( I can't drive... so I find other modes of transportation. )Never be ashamed!!! Living with epilepsy is a challenge, it builds character, use it to show others your strengths. Use this to teach others that this disability doesn't mean you cannot accomplish a full and happy life. Show them you- and they will forget you are disabled.At my old job when I first started having seizures my coworkers were gossiping right in front of me about it and I felt awful. But I showed them ME. I became the star employee of our department! I obtained a very difficult certification that only my manager had! I got married, I bought a house, I have no student loans, in short, I have a perfectly normal life, just with a defective brain. I've still been able to achieve more than other people who don't have a epilepsy and are perfectly healthy. I think that says a lot. Be your own advocate :)Cheers!