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Doubting and Mistreatment

Fri, 06/21/2013 - 14:17
Since I had my first grand mal and was diagnosed, I've had a lot of family members act like I "made it up" or I'm faking it. They don't believe I'm actually sick. I have seizures almost every day- mostly in my sleep. I have grand mals and partial seizures. I'm scarred up from head to toe. And, they just wave their hands at me like i'm some kind of outcast. The seizures came out of the blue when I was in my 30s, so they don't believe it. Has anyone else had to deal with this? How do you deal with it? Doctors in the emergency room are SO RUDE, and don't want to deal with it so they wave me off when I'm sick from it (can't hold down food, etc...). I'm sick of people acting like I'm some kind of freak of nature! I feel like I don't belong...

Comments

Re: Doubting and Mistreatment

Submitted by phillips on Thu, 2013-07-04 - 11:20

My first seizure happened when i was 7 then went away until I was in junior high age 14 then I had a second seziure Iwas taken to the hoapital from the nurse room an parents called etc etc. I was off school to see my doctor and then a nuerologist and I waas diagnosed with grand mal epilepsy in 1965 you wantto talk rough I would get in fights over my seizures, I got teased by the boys my age and pushed around to see if they could make me have a seizure so I would fight back and I was the bad guy I was expelled from school and had to see a shrink because I had seizures and even after the shrink said there was nothing wrong with me that I was cuaseing this trouble because I was being provoked the principle allowed me back in school if I behaved myself but 2 weeks later I beat the tar out of a boy that was teasing me and was expelled again and the boys parents filed charges of assault on me the police picked me up at home took me in for questioning and released me to my parents care.I went to court where everything came out before a judge and it was not pretty, I got a lawyer and my doctor ,principal,teachers,a couple freinds,the nuerologist,and a couple others specialist where called on my behalf to make a point of what had happened over a short period of time. I was found to be of stable mind, the charge against me dismissed, the judge spoke rather harshly to the princple for his way of looking at things,and I was told violence never solves anything. As I look back on these months of my first seizures I often wonder how I made it thru and I have heard other stories from other people that are younger than me and how they are embarrased by there seizures,these days my seizure seldom occur and when they do they occur when I am asleep at night in early morning between 5am and 7 am some grand mal and occasionally I will have one were I get up walk out of the house and walk around the block and back home,once I walked into a neighbors house sat down in a chair said "boy am I tired"and went back to sleep .these are things I live with.

My first seizure happened when i was 7 then went away until I was in junior high age 14 then I had a second seziure Iwas taken to the hoapital from the nurse room an parents called etc etc. I was off school to see my doctor and then a nuerologist and I waas diagnosed with grand mal epilepsy in 1965 you wantto talk rough I would get in fights over my seizures, I got teased by the boys my age and pushed around to see if they could make me have a seizure so I would fight back and I was the bad guy I was expelled from school and had to see a shrink because I had seizures and even after the shrink said there was nothing wrong with me that I was cuaseing this trouble because I was being provoked the principle allowed me back in school if I behaved myself but 2 weeks later I beat the tar out of a boy that was teasing me and was expelled again and the boys parents filed charges of assault on me the police picked me up at home took me in for questioning and released me to my parents care.I went to court where everything came out before a judge and it was not pretty, I got a lawyer and my doctor ,principal,teachers,a couple freinds,the nuerologist,and a couple others specialist where called on my behalf to make a point of what had happened over a short period of time. I was found to be of stable mind, the charge against me dismissed, the judge spoke rather harshly to the princple for his way of looking at things,and I was told violence never solves anything. As I look back on these months of my first seizures I often wonder how I made it thru and I have heard other stories from other people that are younger than me and how they are embarrased by there seizures,these days my seizure seldom occur and when they do they occur when I am asleep at night in early morning between 5am and 7 am some grand mal and occasionally I will have one were I get up walk out of the house and walk around the block and back home,once I walked into a neighbors house sat down in a chair said "boy am I tired"and went back to sleep .these are things I live with.

Re: Doubting and Mistreatment

Submitted by sradford on Tue, 2013-07-09 - 01:53

sradford

Hey im a new member on here . But I understand what you are talking about . My 15 yr old son started have one seizure after another on june 18th 2013 . After being admitted to the hospital after I refused to take him home without an explaination the drs finally witnessed what I had been seeing. He has been diagnosed with epilepsy . They gave me a couple of names for these seizures they start out as one type and progress to another is my understanding. He was having them in clusters for the first few days but now is down to one a day there has even been once he went 2 days straight without one.  I have been in a battle with my family over this though ! Because they haven't witnessed one of them he is supposedly faking them !!!! But he is not . I have had a lot of trouble out of him for the past 3 months and it was a drastic change from what his behavior was prior to all this . He was also complaining of muscle and body aches for months before his behavior changed. Now I know why ....he has them in his sleep ...full body convulsions and everything . But he doesn't  remember anything !!! I know my son is sick , I have seen him in these . I cant help but be sooo angry and resentful towards my family . My son tells me he is sorry all the time ....like he has done something wrong,,because I am out of work on fmla trying to get meds to stop them but we have  no money without me working and im afraid to leave him at home while I work 12 hr shifts with his 11 yr old brother to care for him and have no one else to stay with them. I don't think I will ever be able to forgive them for mocking him they way they have and I don't think I will ever let them back into our lives either .

sradford

Hey im a new member on here . But I understand what you are talking about . My 15 yr old son started have one seizure after another on june 18th 2013 . After being admitted to the hospital after I refused to take him home without an explaination the drs finally witnessed what I had been seeing. He has been diagnosed with epilepsy . They gave me a couple of names for these seizures they start out as one type and progress to another is my understanding. He was having them in clusters for the first few days but now is down to one a day there has even been once he went 2 days straight without one.  I have been in a battle with my family over this though ! Because they haven't witnessed one of them he is supposedly faking them !!!! But he is not . I have had a lot of trouble out of him for the past 3 months and it was a drastic change from what his behavior was prior to all this . He was also complaining of muscle and body aches for months before his behavior changed. Now I know why ....he has them in his sleep ...full body convulsions and everything . But he doesn't  remember anything !!! I know my son is sick , I have seen him in these . I cant help but be sooo angry and resentful towards my family . My son tells me he is sorry all the time ....like he has done something wrong,,because I am out of work on fmla trying to get meds to stop them but we have  no money without me working and im afraid to leave him at home while I work 12 hr shifts with his 11 yr old brother to care for him and have no one else to stay with them. I don't think I will ever be able to forgive them for mocking him they way they have and I don't think I will ever let them back into our lives either .

Re: Doubting and Mistreatment

Submitted by sdenham4 on Wed, 2013-07-10 - 14:57

i'm so sorry yall are having to deal with all that! wow! i can't imagine! i thank God for the support we've had with family, docs, the school, and friends with my 14 yr old daughter! it's already been so hard on her with support, can't imagine if she didn't have that! well just hang in there and hopefully we can all keep informing the public about seizures and epilepsy!

i'm so sorry yall are having to deal with all that! wow! i can't imagine! i thank God for the support we've had with family, docs, the school, and friends with my 14 yr old daughter! it's already been so hard on her with support, can't imagine if she didn't have that! well just hang in there and hopefully we can all keep informing the public about seizures and epilepsy!

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