Personal accounts of seizures

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I have temporal lobe seizures that typically look much different than a "typical" seizure, which means it can be hard to figure out what is a seizure and what isn't. There are countless medical sites that describe the symptoms/types of seizures, but I'm looking for first-hand accounts of seizures by people who have them -- it's incredible helpful it is just to know you're not alone. Though I can't seem to find a website/ forum for this. Has anybody else found this helpful, or found a place on the web that includes stories by epileptics? I can't even find it on this website. Does anybody know of anything? Thanks!

Comments

You aren't the only person to

Submitted by just_joe on Sun, 2014-12-14 - 11:55

You aren't the only person to want more information. Each persons sepilepsy is different. The same with symptoms. Mainly because each person is different and each persons brain or body is different. Does everybody eat the same foods? Epilepsy is not a one size fits all disorder. Yes it is a disorder and they tagged it a disease for funding can be made or iut can be listed.I was having wierd feelings in my right hand and had been written up for day dreaming in class for about a year before having a grande mal seizure. Are wierd feeling in one area of your body listed in symptoms of a type of epilepsy or seizure? Unless you know what to look for or where to lok then you may never know exactly what the symptoms are. My wierd feeling and those day dreams were focal seizures. Some of the day dreams were petite mal seizures. In other words focal seizures and absence seizures both look like the person is in a day dream. In focal motor epilepsy there are also many different symptoms since a focal seizure can generalize. Generalization means instead of focalizing in one area of the brain the seizure start focused in one area but when it generalizes it covers the entire brain. So those wierd feeling left the hand itself and covered the entire body and the seizures looked like a grand mal seizure. The main difference in the two is in a focalmotor saeizure the person in it is fully concious of everything happening. I know the seizure was happening. Once my right hand started to rise up I knew once it got shoulder high I would be going down in a convulsion.So those are things I learned about with my epilepsy and seizures and my symptoms prior to the diagnosis. Once the diagnosis came out I researched the kinds of epilepsy I had and the kinds of seizures I could have. You may not have all the different symptoms in the type of epilepsy or the type od seizure. Do I worry about having a grand mal seizure? No since I have only had 1 which happened in 1963. Do I worry about having a focal seizure that can generalize? No since I haven't had a convulsive seizure since 1970. I can still have them but worring about something that may never happen again is wasted worring. You would not like for me to go into status epilepticus since those happened in 1970. I learned about what happened and I knnow why it happened and what it did to those arround me. The story is long and I was the person responsabile for what happened because I didn't want to take medications and hated epilepsy because people were telling me I couldn't do this or that .Back in the 1960's people with epilepsy were still being put away in homes away from the public. Out of site out of mind.. Add the fact that there was no internet, forums were not around and you went to a library to garner your information. The library books werwe well outdated but they did have a lot of inforamtion in them.So what would you be doing if it were your diagnosis and you were here back then??? I really don't like all the things social media since the kids today think everybody can find anything they want in a matter of seconds. They think the internet solves all their questions. So they text and look at the internet rather then going out and actually TALKING and researching with others to find the answers. What they get out of history is very little actual facts on what was happening at that point in time. The EFA was around back in the late 1960's and I knew about them in the early 1970's. The EFA was first in a city and then a state. They started going nationally in the early 1980's. I was a member of the DEA (Dallas Epilepsy Association) Carol Cervinka was over it here and she moved to DC when the EFA started pushing thngs harder. As for stories I saw a few now and then and there have been some put in the forums in different places My epilepsy is caused by scared brain tissue in the left lobes of my brain. The scar tissue was caused by a hemmorage to the brain. The hemmorage was caused by a blow to the head which could have knocked me out. Well I know when that happened. Where that happened. I also know the doctors back then were more worried about the 4 teeth knocked out and the gash on the inside of my jaw which took 32 stiches to sew up. No scar on the outside of my jaw but I do remember it well.

You aren't the only person to want more information. Each persons sepilepsy is different. The same with symptoms. Mainly because each person is different and each persons brain or body is different. Does everybody eat the same foods? Epilepsy is not a one size fits all disorder. Yes it is a disorder and they tagged it a disease for funding can be made or iut can be listed.I was having wierd feelings in my right hand and had been written up for day dreaming in class for about a year before having a grande mal seizure. Are wierd feeling in one area of your body listed in symptoms of a type of epilepsy or seizure? Unless you know what to look for or where to lok then you may never know exactly what the symptoms are. My wierd feeling and those day dreams were focal seizures. Some of the day dreams were petite mal seizures. In other words focal seizures and absence seizures both look like the person is in a day dream. In focal motor epilepsy there are also many different symptoms since a focal seizure can generalize. Generalization means instead of focalizing in one area of the brain the seizure start focused in one area but when it generalizes it covers the entire brain. So those wierd feeling left the hand itself and covered the entire body and the seizures looked like a grand mal seizure. The main difference in the two is in a focalmotor saeizure the person in it is fully concious of everything happening. I know the seizure was happening. Once my right hand started to rise up I knew once it got shoulder high I would be going down in a convulsion.So those are things I learned about with my epilepsy and seizures and my symptoms prior to the diagnosis. Once the diagnosis came out I researched the kinds of epilepsy I had and the kinds of seizures I could have. You may not have all the different symptoms in the type of epilepsy or the type od seizure. Do I worry about having a grand mal seizure? No since I have only had 1 which happened in 1963. Do I worry about having a focal seizure that can generalize? No since I haven't had a convulsive seizure since 1970. I can still have them but worring about something that may never happen again is wasted worring. You would not like for me to go into status epilepticus since those happened in 1970. I learned about what happened and I knnow why it happened and what it did to those arround me. The story is long and I was the person responsabile for what happened because I didn't want to take medications and hated epilepsy because people were telling me I couldn't do this or that .Back in the 1960's people with epilepsy were still being put away in homes away from the public. Out of site out of mind.. Add the fact that there was no internet, forums were not around and you went to a library to garner your information. The library books werwe well outdated but they did have a lot of inforamtion in them.So what would you be doing if it were your diagnosis and you were here back then???  I really don't like all the things social media since the kids today think everybody can find anything they want in a matter of seconds. They think the internet solves all their questions. So they text and look at the internet rather then going out and actually TALKING and researching with others to find the answers. What they get out of history is very little actual facts on what was happening at that point in time. The EFA was around back in the late 1960's and I knew about them in the early 1970's. The EFA was first in a city and then a state. They started going nationally in the early 1980's. I was a member of the DEA (Dallas Epilepsy Association) Carol Cervinka was over it here and she moved to DC when the EFA started pushing thngs harder. As for stories I saw a few now and then and there have been some put in the forums in different places My epilepsy is caused by scared brain tissue in the left lobes of my brain. The scar tissue was caused by a hemmorage to the brain. The hemmorage was caused by a blow to the head which could have knocked me out. Well I know when that happened. Where that happened. I also know the doctors back then were more worried about the 4 teeth knocked out and the gash on the inside of my jaw which took 32 stiches to sew up. No scar on the outside of my jaw but I do remember it well.

You aren't the only person to want more information. Each persons sepilepsy is different. The same with symptoms. Mainly because each person is different and each persons brain or body is different. Does everybody eat the same foods? Epilepsy is not a one size fits all disorder. Yes it is a disorder and they tagged it a disease for funding can be made or iut can be listed.I was having wierd feelings in my right hand and had been written up for day dreaming in class for about a year before having a grande mal seizure. Are wierd feeling in one area of your body listed in symptoms of a type of epilepsy or seizure? Unless you know what to look for or where to lok then you may never know exactly what the symptoms are. My wierd feeling and those day dreams were focal seizures. Some of the day dreams were petite mal seizures. In other words focal seizures and absence seizures both look like the person is in a day dream. In focal motor epilepsy there are also many different symptoms since a focal seizure can generalize. Generalization means instead of focalizing in one area of the brain the seizure start focused in one area but when it generalizes it covers the entire brain. So those wierd feeling left the hand itself and covered the entire body and the seizures looked like a grand mal seizure. The main difference in the two is in a focalmotor saeizure the person in it is fully concious of everything happening. I know the seizure was happening. Once my right hand started to rise up I knew once it got shoulder high I would be going down in a convulsion.So those are things I learned about with my epilepsy and seizures and my symptoms prior to the diagnosis. Once the diagnosis came out I researched the kinds of epilepsy I had and the kinds of seizures I could have. You may not have all the different symptoms in the type of epilepsy or the type od seizure. Do I worry about having a grand mal seizure? No since I have only had 1 which happened in 1963. Do I worry about having a focal seizure that can generalize? No since I haven't had a convulsive seizure since 1970. I can still have them but worring about something that may never happen again is wasted worring. You would not like for me to go into status epilepticus since those happened in 1970. I learned about what happened and I knnow why it happened and what it did to those arround me. The story is long and I was the person responsabile for what happened because I didn't want to take medications and hated epilepsy because people were telling me I couldn't do this or that .Back in the 1960's people with epilepsy were still being put away in homes away from the public. Out of site out of mind.. Add the fact that there was no internet, forums were not around and you went to a library to garner your information. The library books werwe well outdated but they did have a lot of inforamtion in them.So what would you be doing if it were your diagnosis and you were here back then??? I really don't like all the things social media since the kids today think everybody can find anything they want in a matter of seconds. They think the internet solves all their questions. So they text and look at the internet rather then going out and actually TALKING and researching with others to find the answers. What they get out of history is very little actual facts on what was happening at that point in time. The EFA was around back in the late 1960's and I knew about them in the early 1970's. The EFA was first in a city and then a state. They started going nationally in the early 1980's. I was a member of the DEA (Dallas Epilepsy Association) Carol Cervinka was over it here and she moved to DC when the EFA started pushing thngs harder. As for stories I saw a few now and then and there have been some put in the forums in different places My epilepsy is caused by scared brain tissue in the left lobes of my brain. The scar tissue was caused by a hemmorage to the brain. The hemmorage was caused by a blow to the head which could have knocked me out. Well I know when that happened. Where that happened. I also know the doctors back then were more worried about the 4 teeth knocked out and the gash on the inside of my jaw which took 32 stiches to sew up. No scar on the outside of my jaw but I do remember it well.

i had seizures for 2 years,

Submitted by winifredbeware@gmail.com on Tue, 2014-12-16 - 01:43

i had seizures for 2 years, absence seizures, with eegs all normal, they thouhgt it was PTSD. people would look at me and ask what was wrong, i spaced out, I wasn't aware, and didnt know what they were talking about