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Somone to talk to
Thu, 10/24/2013 - 17:20I have been just recently diagnosed with epilepsy. I have no idea how to cope. I don't even know what kind of seizures they are. I have had normal EEGs but the medicine so far has worked. I feel so embarrassed and frankly mortified. My mom follows me around like a crazy lady. I went from being a very independent thriving young woman to being a stay at home in my pajamas feeling like a bum. I also have joint pain and popping. Is that part of epilepsy?How do I go back to being "Normal". I must admit I'm all freaked out about this aura stuff. Like if I have too much caffeine or if I am just simply tired. I get all paranoid. I sometimes have seizures that I don't shake or anything and I think they are called partial seizures??? And then I have grand mal seizures. Its so painful and scary. I haven't had any partial seizures for a while but it has only been a few weeks since I had a grand mal seizure. I feel like I can't go out in public and do anything with my friends because of the seizures. I can't even go out to eat at a steak house because of the lights making me have a headache and I freaked out because I didn't want to have a seizure. I must admit that I was angry when the doctor diagnosed me with epilepsy and I'm not sure why? Is there anything that I can do to bring back the normalcy? I'm all ears and ready for advice. What questions should I ask the doctor?
Thanks for hearing me out.
Mollz
Comments
Re: Somone to talk to
Submitted by just_joe on Tue, 2013-10-29 - 17:13
What you are going thru is normal for many people. As for going back to normal. A question to ask is what is normal?
In order to get back to being nornal start by finding out what type of seizures you have. I was diagnosed with epilepsy back in 1963. I was 13 when Diagnosed but I had gone over a year after having my first grand mal seizure. Understand too that there is still a stigma about epilepsy. Most people thiink all seizures are convulsive. Which is what most have heard. Auras are seizures in themselves. I was lucky to havea family that loved me and wanted me to do things that everybody else did.
You should not be ashamed of having epilepsy. It can happen to anybody. If you educate yourself about the seizures you have and other types of seizures use that knowledge to teach your friends. The more they know the better for everybody. If someone backs away becasue they are afraid just inform them that it is a handicap the only diference is your handicap can not be seen. Fred has a handicap but you see his wheelchair. Donna has a handicap but you can see her hearing aid. My handicap you can not see like saras you do know she has diabets. You see many other people have to live with their issues. Like I said educate yourself and your mother set down and talk tell her the things you learned and together set some guidlines by getting her involved she will see you want to go on with your life and arent going to let epilepsy hold you back. Oh and I do have a cousin that had epileptic seizures when she was young. She is now a very happy lady living her life. She grew out of epilepsy but she still lets people know about epilepsy. I have personally lived with epilepsy for 50+ years. As for moms. Mine followed me around from time to time. If it weren't for my moms prayer I woud not here today.
Back in the 1960's they were still putting people with epilepsy in homes away from the public. In teh 1970's some states were still keeping people with epilepsy from getting marriage licenses.
More needs to be done and more people are becoming aware of what many of us go thru on a daily basis.
As a matter of fact November is Epilepsy Awareness Month and the ribbons are like the pink ones for cancer. Our color is purple. I am currently trying to find out if my neices will make any bracelets for us considering they mad some for cancer awarness.
Do what you did before you had the seizures. Go to parties have fun with your friends but understand your limits and try and stay withing those limits. I used to go to the clubs with my friends. I would limit my drinks to 1 and my beers would be nursed (I made them last up to 2 hours. If you want to know how to make them think you are drinking like they are order a drink like a penia colada butafter the first have them made into Shirley Temples.(basically the same drink but without alcohol). As for driving I didn't but that does not mean I didn't go places and have fun. If the guys were going someplace they picked me up. hey I bought them a drink now and then or paid for the gas. Split the cost of dinner. There are all kinds of things that can be done. But please do not mope arund the house thinking you can't do things. If you have a dream of doing something great but understanding your limits may change the direction and path to that dream.
Just because you have epilepsy does not mean your life stops. I used my epilepsy to teach others those around me what to do if they ever saw someone in a seizure. I taught them what epilepsy was. The different kinda of epilepsy and what those seizures looked like. I did that in an essay. That essay was used at the school for many years because the vice princable used it at student assemblies when school started and after christmas. You knw when the entire studentbody was together. You see back then there was no internet no i-pads cell phones, We hadn't even goten to the moon yet.
Get up and get dressed and get out. I did. If I had a seizure I dusted myself off and went on. Oh and yes I had them at school. MMMM My seizures looked and were as bad as grand mal and they are not nice to look at. However in my convulsive seizures I could see hear and understand what was happening I just couldn't control anything.While at school I was taken to the nurses office. I was watched for a period of time then released to go home or the next class depending on the time of day. Believe me if that happens an you just get up and go the kids think a little differently. They ask what happened which opens the door to educate them. That happened a lot and those were friends that stood by me when were bad. By doing that they also knew they could come to me creating a stronger relationship.
There is one poem that I was given by my father but it can pretain to many different things the poem is IF written by Rudyard Kippling. Start by reading that then educate yourself and your mother.
Then follow your dreams learn how to help others most people do not know that just talking to others helps they in more ways than just the conversation.
I hope this helps. Sorry but I do get long winded at times
Joe
What you are going thru is normal for many people. As for going back to normal. A question to ask is what is normal?
In order to get back to being nornal start by finding out what type of seizures you have. I was diagnosed with epilepsy back in 1963. I was 13 when Diagnosed but I had gone over a year after having my first grand mal seizure. Understand too that there is still a stigma about epilepsy. Most people thiink all seizures are convulsive. Which is what most have heard. Auras are seizures in themselves. I was lucky to havea family that loved me and wanted me to do things that everybody else did.
You should not be ashamed of having epilepsy. It can happen to anybody. If you educate yourself about the seizures you have and other types of seizures use that knowledge to teach your friends. The more they know the better for everybody. If someone backs away becasue they are afraid just inform them that it is a handicap the only diference is your handicap can not be seen. Fred has a handicap but you see his wheelchair. Donna has a handicap but you can see her hearing aid. My handicap you can not see like saras you do know she has diabets. You see many other people have to live with their issues. Like I said educate yourself and your mother set down and talk tell her the things you learned and together set some guidlines by getting her involved she will see you want to go on with your life and arent going to let epilepsy hold you back. Oh and I do have a cousin that had epileptic seizures when she was young. She is now a very happy lady living her life. She grew out of epilepsy but she still lets people know about epilepsy. I have personally lived with epilepsy for 50+ years. As for moms. Mine followed me around from time to time. If it weren't for my moms prayer I woud not here today.
Back in the 1960's they were still putting people with epilepsy in homes away from the public. In teh 1970's some states were still keeping people with epilepsy from getting marriage licenses.
More needs to be done and more people are becoming aware of what many of us go thru on a daily basis.
As a matter of fact November is Epilepsy Awareness Month and the ribbons are like the pink ones for cancer. Our color is purple. I am currently trying to find out if my neices will make any bracelets for us considering they mad some for cancer awarness.
Do what you did before you had the seizures. Go to parties have fun with your friends but understand your limits and try and stay withing those limits. I used to go to the clubs with my friends. I would limit my drinks to 1 and my beers would be nursed (I made them last up to 2 hours. If you want to know how to make them think you are drinking like they are order a drink like a penia colada butafter the first have them made into Shirley Temples.(basically the same drink but without alcohol). As for driving I didn't but that does not mean I didn't go places and have fun. If the guys were going someplace they picked me up. hey I bought them a drink now and then or paid for the gas. Split the cost of dinner. There are all kinds of things that can be done. But please do not mope arund the house thinking you can't do things. If you have a dream of doing something great but understanding your limits may change the direction and path to that dream.
Just because you have epilepsy does not mean your life stops. I used my epilepsy to teach others those around me what to do if they ever saw someone in a seizure. I taught them what epilepsy was. The different kinda of epilepsy and what those seizures looked like. I did that in an essay. That essay was used at the school for many years because the vice princable used it at student assemblies when school started and after christmas. You knw when the entire studentbody was together. You see back then there was no internet no i-pads cell phones, We hadn't even goten to the moon yet.
Get up and get dressed and get out. I did. If I had a seizure I dusted myself off and went on. Oh and yes I had them at school. MMMM My seizures looked and were as bad as grand mal and they are not nice to look at. However in my convulsive seizures I could see hear and understand what was happening I just couldn't control anything.While at school I was taken to the nurses office. I was watched for a period of time then released to go home or the next class depending on the time of day. Believe me if that happens an you just get up and go the kids think a little differently. They ask what happened which opens the door to educate them. That happened a lot and those were friends that stood by me when were bad. By doing that they also knew they could come to me creating a stronger relationship.
There is one poem that I was given by my father but it can pretain to many different things the poem is IF written by Rudyard Kippling. Start by reading that then educate yourself and your mother.
Then follow your dreams learn how to help others most people do not know that just talking to others helps they in more ways than just the conversation.
I hope this helps. Sorry but I do get long winded at times
Joe
Re: Somone to talk to
Submitted by Sunshine77386 on Tue, 2013-10-29 - 16:58
Join our group on Google+ - Epilepsy Awareness. You'll find lots of us to talk to. There is a link on the MyEpilepsy.com homepage to follow.