How long have you had Epilepsy?

[Ruth]

Hi Graziania,

I lived on a horse ranch when I was a child. My sister also had epilepsy at the time. My father had to take us to the hospital. There were no ambulances. That was 60 years ago. My sister fell off of a horse when she had her tonic clonic seizure. She was on Dilantin. My mother took care of her at home.

I never thought about me having seizures at the time. I was having a lot of abscence seizures at that time. I was allergic to Dilantin. I was not on any medication. Ruth

 

[joey]

Also, in some countries they still believe that ridiculous lie. So much for some religions.......................

I didn't have epilepsy when I was growing up, so I can only imagine how cruel kids must have been to you. But I did make sure I educated the other children my two kids hung around with about epilepsy. And I did go to their school and talk to the school about epilepsy.

I started having seizures at 22, and still have them once in a while.

Cindy

I have heard that people talk about demon possession when it comes to epilepsy. I have had e for 17 years and nobody ever told me that to my face anyways. But it is just another thing people say about stuff they dont know about. But in some countrys including this one people say having tattoos is evil or just a sign of a bad person. we all have our taboos about something we know little about. The one i really hate is when people think having a seizure is because that person does drugs. Im sure people think that about me because of my tattoos and stuff but nobody still has the guts to say it to my face. Im just lucky nobody picks on me but then again I have been in many fights.

 

[Ruth]

Let's keep the discussion of religion out of this please.

Hi Joey, how are you? That quote is on page 6, #120 of this discussion.

It's good to hear from you. Stop by and say hello again. I had problems when I was a teenager. Only a person planning to become a nurse really understood what we go through. She, and her parents, were really good friends. That was 49 years ago. There were no support groups or forums back then. The Epilepsy Foundation only wanted money. Now, they help us out. They needed the donations to get really started.

I have a lot of friends now. People understand more about epilepsy now. We can be thankful for that. Ruth:e::e:

 

[foreverdark]

I had my first seizure in '05 exactly one month to the day after my shoulder surgery. But I have had my "spells", deja vu-flying backwards-feeling like I've never been in a room or seen anything in it in my life even though it is my own home, since I was a kid. My parents say I also would just start staring off into space and not respond for a minute or two since I was a kid.

There is no known family history of Epilepsy on my mother's side, but my dad's father was adopted and I don't think much is known about his birth family.

 

[Cinnabar]

Joey, something good to vent. I have heard stories that when some people are brought to emergency they've been asked if they've been drinking or use drugs. A terrible stigma. The bright side to this is that we are not burned at the stake like our own kind believed to be witches or evil doers, long ago in Salem!

We have to remind ourselves of all the famous people who've contributed to the arts and science. Read my signature below.

 

[Ruth]

Hi Cinnabar,

I, personally, do not want to talk about it beacuse it was such a long, long time ago. Things have changed now. There was a stigma when I was growing up. I do not see that anymore. Ruth

 

[joey]

Joey, something good to vent. I have heard stories that when some people are brought to emergency they've been asked if they've been drinking or use drugs. A terrible stigma. The bright side to this is that we are not burned at the stake like our own kind believed to be witches or evil doers, long ago in Salem!

We have to remind ourselves of all the famous people who've contributed to the arts and science. Read my signature below.

never heard of em

 

[joey]

I had my first seizure in '05 exactly one month to the day after my shoulder surgery. But I have had my "spells", deja vu-flying backwards-feeling like I've never been in a room or seen anything in it in my life even though it is my own home, since I was a kid. My parents say I also would just start staring off into space and not respond for a minute or two since I was a kid.

There is no known family history of Epilepsy on my mother's side, but my dad's father was adopted and I don't think much is known about his birth family.

i get those same feelings it is very weird it is just like de ja vu.

 

[Ruth]

Hi Joey, I think all of us get de ja vu. I have heard it a lot in the forum.

I have no problem in the ER. They understand my epilepsy. I know a lot of hospitals do not. I think it is because we live in a small town. Everyone knows everyone. Large cities do not remember their clients. I prefer the word client because the word patient means to suffer. A lot of times we do suffer.

 

[foreverdark]

I have no problem in the ER. They understand my epilepsy. I know a lot of hospitals do not. I think it is because we live in a small town. Everyone knows everyone.

I have that same experience here. That is why I LOVE small towns!!

 

[Ruth]

foreverdark

:agree:

 

[stilldancing_98]

I've had epilepsy for 34 years, my son has had it all his life 11 years. I have been told I have the worst condition at harborview. Oh well. At least I'm well known. lol I have been told I have demons in me by religious leaders. I have been told I am blessed to. I'll accept the second one thank-you. I am loved and I love. And the most important thing is to raise my son the same way. He is loved. That he loves all who are different and that is can be as strong or as week as he chooses to be. He has fall backs. We all have that. But without them where would the opportunities be?There are so many people we can touch. Its just being in love with who you are and not letting others without that love hold you back from your true destiny. Teresa

 

[Ruth]

Hi Teresa,

I have been saying that I go to my meetings. I have a lot of friends there. I say that instead of religion. I am accepted and we do not believe in demon-possession. I am sorry that you have been to a religion that does not believe the way Jesus did.

Other than that: :agree: Ruth

 

[McGill]

Sharon, what you posted in Post # 10 was the prevailing attitude of people who had a seizure disorder. A lot of people are still living in denial of the reality and it makes it hard for the person coping with E to get on with their life. I have heard of the same thing as was described in that post. Many parents & relatives associated a lot of shame and societal stigma to anyone having E. It's been a long struggle, but one CAN have as full a life as possible and maintain a positive attitude. If anyone doubts me, read my bio.

To get back on track with this thread's topic, I've had E for nearly 60 yrs. Much of the information I had to dig up myself b/c my family was in denial AND I was on the wrong Rx for 25 yrs. at one point. I'm now being re-assessed for new Rx, b/c the current regime doesn't seem to be working as well as the effects of long term use of phenytoin.

 

[foreverdark]

I can NOT believe people honestly still think that E is not anything more than the possesion of a demon!!! I LOVE how, I apologize for the word here, STUPID people can be!!!!

 

[Ruth]

The stigma a century ago was: They hid it "in the closet." That is gone now.

McGill, Sharon said a lot of things in Post #10. Would you please quote which part you are talking about?

 

[McGill]

I'm going to quote what sdomeone else shared, but I'm not going to mention the name so noone will recognize the person (or words to that effect),

"...When I had mine done, it nearly tore my family apart! The Doctor told my parents and I it was a DNA trait and all genetic and started to ask my parents a bunch of questions, more so on my mom's end than my dad's. My mom and dad were really upset and they were worried about my sister if she's got it too and he said the chances are 'probably'. My mom called her mom and had a long talk on the phone and they got into a fight. I was in tears. I never saw my mom so upset like this before. My dad talked on his cell with his parents and the only thing he got was that his mom could only remember his great-aunt was put away to a mental institution but she did not know what for. But she knows that her sisters who married and had children had 'strange children' who had to go to a special State institution, but they never said why. There was no way for them to talk to anyone as they're all dead for years. One week later my grandma called back and then tells my mom about her oldest sister of how they had to put her away because she would be wild as an Indian making a strange noise, falling on ground, and the parsonage told them she was demon possessed. They tried to cast demons out of her and could not. And her second eldest sister had the same spells later on after a bad bout of whooping cough and fevers, and they had to put her away. All there was left were 2 brothers and 2 sisters and we were instructed by our father never to talk about our elder sisters for they brought shame and disgrace to the family. On the next appointment the Doctor appreciated this information and was able to let me know that my children would face the possibilities of having epilepsy if I were ever to find a woman and get married.

This is the passage to which I was referring. N.B.:I'm NOT trying to get into scriptural issues here. Rather, I'm referring to the shame & ignorance displayed by people when there was information available.

What this describes is a denial of reality and what people COULD have done, if they so chose to do so. 'Nuff said.

 

[Ruth]

McGill, I fully agree with you.

My father had epilepsy and through a situation that is unblievable, but it is the truth. My great grand father on my father's side of the family, epilepsy had been inherited for hundreds of years. My greatgrandfather had all of his grandchildren born in China. My father had a Chinese birth certificate. If he lived to the age of 17 without having epilepsy, then he would be returned to the USA. If not, he would live his complete live in China. I wonder how many relatives I have in China. I had to fight to get this information. I was about 40 when I got the information. It shocked me.

My father was brought back to the USA. In the USA, is where me and my sister inherited epilepsy. My father was loving and treated me and my sister as normal people. I have 3 children, myself, with epilepsy. I told them it was just due to our imperfection. We are living our lives, knowing that we are normal. My father's side of the family disowned me. I was not allowed to come to his funeral. They were afraid I might have a seizure.

That is the stigma that my father and I went through.

 

[stilldancing_98]

Oh you guys, I am sorry. I did not mean to make anybody feel bad. It was something I went through at the age of 18. I'm 44 and have had many good experiences to. Life is good. If you ask me they were brain washed. They didn't have answer for this and so they made up there own. It makes me a stronger person today. I don't judge anybody by any thing disease, chronic or not that they may have. We are all human, and we are here to help and love one another. Shame on me if I can't forgive ignorance. I know I've done it.Teresa

 

[McGill]

Teresa, there's no need for you to apologize for someone who simply states the truth of their experience. What happened is history, We're living in the present, so let's dance to the music!