Aleda
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Hi there all!
Sorry if these will be long.
My name is quite difficult to pronounce, so you can just call me Aleda :woot:
I'm from Poland, I'm 18 and I suffer from seizures for 2 years, but the problem about them is that I don't really know what kind of seizures they are and how to approach them. I signed up here in hopes in meeting people who could help me cope with my condition.
I was referred to numerous doctors to no avail. I had a scan of my brain, EEG during a seizure, four times neurological evaluation and one time 24 h observation during which I got two seizures.
I've done this test when I started having this wierd spells, that look as follows:
Firstly, I feel tired and drowsy. Then, I start to feel faint and weak and my perception kinda shrinks, the sounds, the sights, all become diminished and more like they are 'around me', 'wrapping me'. I see dark spots in front of my eyes and am getting dizzy. Then, I swoon to the floor. I used this word because I don't fall like I was hit with a ton of bricks, but rather buckle my kness and slide tho the ground. Then my eyes roll back into my head, foam comes out of my mouth and I shake violently, hitting my head hardly on the ground, hitting my body, it's like something from the exorcist once it starts it's really difficult to restrain my body. These go in clusters in between which I lie still and then it all resumes. Sometimes my body stiffens, too, to the point that when I come to myself I cry from pain in my muscles which I'm unable to stop. The weirdest think, though, is that a full - blown tonic - clonic leaves a person totally unconscious. I'm semi - conscious, like I'm high on drugs but still conscious. I can vaguely observe people sometimes, I hear them just fine, but I cannot form any answers and after a seizure my brain is clouded, I talk rubbish and sometimes stutter. I also have no post - ictal which is strange - I only sometimes feel worn out, achy, and unable to stand steadily for a period of time afterwards.
These happen when I'm stressed, when I'm sleep - deprived, hungry, when I exercise a lot, and even in my sleep. And they happen a lot, in strings of more than 3 a day.
The question is, when I was hooked up to an EEG, the doctor injected me saline solution and told me it's a strong drug know for inducing seizures. I was already stressed out so much, and adding this very 'helpful' information, I got one of my fits. When it was over, (by this time I had a resonance, head scan, neurological evaluation and physician evaluation done), the docs showed me a clear EEG and stated that these are fake seizures which I perform for attention and told me to quit whining and that I'm immature and inapropriate in behaviour and I need a psychiatrist. I had a seizure one more time and this time the doc just walked over to me, grabbed me by the legs and said, 'Stop pulling this already'.
I was discharged home, the Depakine I take for mood stabilization, some benzos, and fated to lie everytime my loved ones and friend saw me having a seizure about having 'untreatable epilepsy' - because if I told them the truth, well, they would send me to the shrinks. I was teased because of how I would get shaky without reason and then fall to the floor, I was insulted, one girl told me that I'm a freak and she would never, ever trust a doctor with epilepsy, and that I can forget about medical studies because I will hurt people with my condition...I was the well - know Exorcist - girl. Even though I had support and firm grip in teachers, I was forced to quit school and study at home, and the principal dared offer me a place in special needs school because I was such a sore on their system, ''interrupting classes', as he put it.
My dad told me: 'Sorry, but these really look like you fake it'. He also makes fun of my condition.
My mom believes that I do it to be watched and to get what I want.
The truth is everytime I get the aura I just wish I could magically dissappear. I'm fed up with all these worrying people and calling an ambulance to me. If I wanted attention that badly, I'd go for slit wrists or some disease. I wouldn't commit nine years of school education to getting attention, for godness sake!
My aunt said to me that I'm hysterical, moody emo, raised this way by my mother, and I can go pulling things like that off in my house (it was on our trip together this year. It was the first time I actually started to cry and said 'F*ck you'.
She hit me in the face and said to me - 'GTFO of my house you bitch'.
My friends turned their backs at me. My best friend stopped inviting me into her house because she said I was 'scary' and she couldn't cope with my attacks. The paramedics where mean, saying things like: 'stop faking', 'you are perfectly fine'...Little did they realise that my legs felt like jelly and one time I was actually unconscious - still not genuine enough?
I'm sick and tired of living like this. I would much rather suffer generalised seizures for the rest of my miserable life, with frequency of at least one a month, than be constantly told it's all in my head. I'm terribly SORRY for the lenghthy post, but please, help me....
Sorry if these will be long.
My name is quite difficult to pronounce, so you can just call me Aleda :woot:
I'm from Poland, I'm 18 and I suffer from seizures for 2 years, but the problem about them is that I don't really know what kind of seizures they are and how to approach them. I signed up here in hopes in meeting people who could help me cope with my condition.
I was referred to numerous doctors to no avail. I had a scan of my brain, EEG during a seizure, four times neurological evaluation and one time 24 h observation during which I got two seizures.
I've done this test when I started having this wierd spells, that look as follows:
Firstly, I feel tired and drowsy. Then, I start to feel faint and weak and my perception kinda shrinks, the sounds, the sights, all become diminished and more like they are 'around me', 'wrapping me'. I see dark spots in front of my eyes and am getting dizzy. Then, I swoon to the floor. I used this word because I don't fall like I was hit with a ton of bricks, but rather buckle my kness and slide tho the ground. Then my eyes roll back into my head, foam comes out of my mouth and I shake violently, hitting my head hardly on the ground, hitting my body, it's like something from the exorcist once it starts it's really difficult to restrain my body. These go in clusters in between which I lie still and then it all resumes. Sometimes my body stiffens, too, to the point that when I come to myself I cry from pain in my muscles which I'm unable to stop. The weirdest think, though, is that a full - blown tonic - clonic leaves a person totally unconscious. I'm semi - conscious, like I'm high on drugs but still conscious. I can vaguely observe people sometimes, I hear them just fine, but I cannot form any answers and after a seizure my brain is clouded, I talk rubbish and sometimes stutter. I also have no post - ictal which is strange - I only sometimes feel worn out, achy, and unable to stand steadily for a period of time afterwards.
These happen when I'm stressed, when I'm sleep - deprived, hungry, when I exercise a lot, and even in my sleep. And they happen a lot, in strings of more than 3 a day.
The question is, when I was hooked up to an EEG, the doctor injected me saline solution and told me it's a strong drug know for inducing seizures. I was already stressed out so much, and adding this very 'helpful' information, I got one of my fits. When it was over, (by this time I had a resonance, head scan, neurological evaluation and physician evaluation done), the docs showed me a clear EEG and stated that these are fake seizures which I perform for attention and told me to quit whining and that I'm immature and inapropriate in behaviour and I need a psychiatrist. I had a seizure one more time and this time the doc just walked over to me, grabbed me by the legs and said, 'Stop pulling this already'.
I was discharged home, the Depakine I take for mood stabilization, some benzos, and fated to lie everytime my loved ones and friend saw me having a seizure about having 'untreatable epilepsy' - because if I told them the truth, well, they would send me to the shrinks. I was teased because of how I would get shaky without reason and then fall to the floor, I was insulted, one girl told me that I'm a freak and she would never, ever trust a doctor with epilepsy, and that I can forget about medical studies because I will hurt people with my condition...I was the well - know Exorcist - girl. Even though I had support and firm grip in teachers, I was forced to quit school and study at home, and the principal dared offer me a place in special needs school because I was such a sore on their system, ''interrupting classes', as he put it.
My dad told me: 'Sorry, but these really look like you fake it'. He also makes fun of my condition.
My mom believes that I do it to be watched and to get what I want.
The truth is everytime I get the aura I just wish I could magically dissappear. I'm fed up with all these worrying people and calling an ambulance to me. If I wanted attention that badly, I'd go for slit wrists or some disease. I wouldn't commit nine years of school education to getting attention, for godness sake!
My aunt said to me that I'm hysterical, moody emo, raised this way by my mother, and I can go pulling things like that off in my house (it was on our trip together this year. It was the first time I actually started to cry and said 'F*ck you'.
She hit me in the face and said to me - 'GTFO of my house you bitch'.
My friends turned their backs at me. My best friend stopped inviting me into her house because she said I was 'scary' and she couldn't cope with my attacks. The paramedics where mean, saying things like: 'stop faking', 'you are perfectly fine'...Little did they realise that my legs felt like jelly and one time I was actually unconscious - still not genuine enough?
I'm sick and tired of living like this. I would much rather suffer generalised seizures for the rest of my miserable life, with frequency of at least one a month, than be constantly told it's all in my head. I'm terribly SORRY for the lenghthy post, but please, help me....
