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It is not fact until all of the steps and years involved on research are completed and publication of the research is thus allowed in a medical journal and thus in the US National Library of Medicine and its equivalents of all other nations who have also verified that the research are fact
Thus, from 1995 onward, the epileptic partial seizures were considered as fact. If you were one of us unlucky to have them before then, the neurologist would tell you that if you are not falling down and… read more
@A MyEpilepsyTeam Member, oh yeah Sean when I have a Grand I almost always walk around after I've gone though the violent shaking and foaming part. The first time I had one this is what freaked my wife out the most because apparently trying to control me in that state is all but impossible. I had been having seizures for years but they were always the petite and at night while I was sleeping so we didn't even know about them, but WOW once I had my first big one it became very clear. It seems that I've now tried to climb out of a window once, go out our backdoor on the 2nd floor, fix some electric (or something like that) and once I even tried to pee on our son while he was pooping. I've come out of one once while I was walking around and my wife gave me the usual "you just had a major seizure" and even though I was standing there in our bedroom with no clue how I had gotten there I still gave her the normal "no I didn't." 😅
@A MyEpilepsyTeam Member
When I was in elementary school I remember hearing that one time when I was having a seizure I got up from my desk and walked out the door. My teacher followed me calling my name, not realizing that it was a seizure. So I guess you can also walk around while having a seizure.
Epilepsy was recognized as a disease as far back as 1909. Treatment for it was minimal and most doctors used phenobarbital because it was the only drug the was successful.
The biggest reason for lack of research is lack of funding. Epilepsy affects far fewer people compared to heart disease, cancer, diabetes and many others. Those diseases get the research money. Also, most doctors are NOT involved in doing research on any diseases unless they work in medical research or research at colleges or universities. Places like the Mayo Clinic, Cleveland clinic, John's Hopkins and other big medical institutions do the research. Additionally big pharmaceutical companies spend money on research.
The bottom line is that if the money isn't there the research doesn't happen anywhere to any large degree.
I had a head injury when I was a child and was diagnosed with a seizure disorder in 2019. I have seen 2 Neuro’s and one of the 2 was an Epileptologist. Both are in there 70’s and both have told me the same thing. It isn’t a seizure unless I’m falling down, shaking, & blacked out. I no longer see these Neurologist, because they only consider Grand-mal a seizure. Absent seizures are auras and only happen children.
These are the reasons I don’t trust some doctors. Some don’t want to continue to advance & Stuck in the past.
@A MyEpilepsyTeam Member
That’s the problem I’ve always had. I never know before or after I have a seizure. When I was in school shop class I was cutting a board and had a seizure. I cut my arm and finger on the saw. I would have stepped back if I knew I was about to have a seizure. So I never can assure my mom I will be okay. I never know when one’s coming.
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