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Would anyone like to share something about their epilepsy?
Wed, 10/30/2013 - 01:13Comments
Re: Would anyone like to share something about their epilepsy?
Submitted by just_joe on Sat, 2013-11-02 - 15:06
Well I will put it this way. My Doc does drug studies on new medicines comming out and the chart of drugs on the wall in the room has over 20 different medications. I have been on almost every one and others that are not on the list. All of the medications I have taken that have generics I have taken the generiics of too. Doc and I have discussed options Like the VNS and even surgery. Those will not work for me since I have no aure before the seizure or I can't mmove during the seizure. SO the VNS is out. Doc had me in a monituring unit and they watched me carefully. I would press the button and inform them when I had a seizure because most of mine are absence or partial seizures. They did an MRI before the EEG. On the last day he was in and was looking at everything they had found. What caused my epilepsy was scared brain tissue he was checking the seizure activity with the MRI and he followed it closely. He also found out that the scar tissue is in more than 1 lobe so surgery is not an option. We have made progress tho. I am on keppra which reduced to number of seizures I was having and the length of time in the seizures as well as the time getting back to normal. We coupled the keppra with vimpat and after I g=had gotten to the dosage we wanted to start with we saw improvement. The vimpat dosage was increased again in august and the number of seizures hav=s been reduced again. I have no problem with the seizures I am having now they have caused problems in hte past but right now I could have a seizure in a crowd and almost everybody in the crowd would not know it. I have been onn hpone calls and had them and I finished the call. Most of my seizures today last a few seconds and the focus time is also in seconds.
Today people talk about side effects or issues they are having. If they are 35 and younger they need to look at what was happening years ago.. In the 1960's people with epilepsy were still being put away in homes away from the public. If they didn't see us they were fine. In the 1970's there were still states who didn't let people with epilepsy get a marriage license. What would the young people do today if they found out that????
Yes people woth epilepsy are having fewer issues becasue more people are becomming aware of epilepsy. More awareness is needed. Which is why we now have this month. Wear your purple and let others know we need assistance.
I can say all this becasue I have been dealing and living with epilepsy for 50+ yeaars.
Well I will put it this way. My Doc does drug studies on new medicines comming out and the chart of drugs on the wall in the room has over 20 different medications. I have been on almost every one and others that are not on the list. All of the medications I have taken that have generics I have taken the generiics of too. Doc and I have discussed options Like the VNS and even surgery. Those will not work for me since I have no aure before the seizure or I can't mmove during the seizure. SO the VNS is out. Doc had me in a monituring unit and they watched me carefully. I would press the button and inform them when I had a seizure because most of mine are absence or partial seizures. They did an MRI before the EEG. On the last day he was in and was looking at everything they had found. What caused my epilepsy was scared brain tissue he was checking the seizure activity with the MRI and he followed it closely. He also found out that the scar tissue is in more than 1 lobe so surgery is not an option. We have made progress tho. I am on keppra which reduced to number of seizures I was having and the length of time in the seizures as well as the time getting back to normal. We coupled the keppra with vimpat and after I g=had gotten to the dosage we wanted to start with we saw improvement. The vimpat dosage was increased again in august and the number of seizures hav=s been reduced again. I have no problem with the seizures I am having now they have caused problems in hte past but right now I could have a seizure in a crowd and almost everybody in the crowd would not know it. I have been onn hpone calls and had them and I finished the call. Most of my seizures today last a few seconds and the focus time is also in seconds.
Today people talk about side effects or issues they are having. If they are 35 and younger they need to look at what was happening years ago.. In the 1960's people with epilepsy were still being put away in homes away from the public. If they didn't see us they were fine. In the 1970's there were still states who didn't let people with epilepsy get a marriage license. What would the young people do today if they found out that????
Yes people woth epilepsy are having fewer issues becasue more people are becomming aware of epilepsy. More awareness is needed. Which is why we now have this month. Wear your purple and let others know we need assistance.
I can say all this becasue I have been dealing and living with epilepsy for 50+ yeaars.
Re: Would anyone like to share something about their epilepsy?
Submitted by just_joe on Fri, 2013-11-01 - 09:32
ahhhhhhhhhhhhhh come on tell us how many meds LOL
I know what you mean considering I have taken almost every medication created to control seizures. I have also taken most of the medications that have generics. The seizues I have been having for the last few years are more like absence seizures but I also have different partial and complex partial seizures.
For surgery my current neuro wanted to check and in that study he saw what the original neurologist was but with a little different process. The scar tussue is on the left side of my brais but in more than 1 lobe so surgery was out years ago. Specialization on medications has helped more than most people think because the medications today are being created to work on certain types of seizures when those are used the time in the seizure is less and the time to focus (get back to normal) is also less. Before the total time in th seizure and focusing would have been 5-45 minutes. Now those minutes have changed. I have kept a log and the time now runs 5-45 seconds and up to a minte or 2. Big differeence now is I can still be productive while in the seizure. I have also been in and around people and nad 1 while I was in a conversation and the people I was with knew nothing about the seizure. If I was having a complex partial which stemed off my focal motor epilepsy I might have to wait a little longer because until the seizure completely subsides I can not work with my right hand.
Joe
ahhhhhhhhhhhhhh come on tell us how many meds LOL
I know what you mean considering I have taken almost every medication created to control seizures. I have also taken most of the medications that have generics. The seizues I have been having for the last few years are more like absence seizures but I also have different partial and complex partial seizures.
For surgery my current neuro wanted to check and in that study he saw what the original neurologist was but with a little different process. The scar tussue is on the left side of my brais but in more than 1 lobe so surgery was out years ago. Specialization on medications has helped more than most people think because the medications today are being created to work on certain types of seizures when those are used the time in the seizure is less and the time to focus (get back to normal) is also less. Before the total time in th seizure and focusing would have been 5-45 minutes. Now those minutes have changed. I have kept a log and the time now runs 5-45 seconds and up to a minte or 2. Big differeence now is I can still be productive while in the seizure. I have also been in and around people and nad 1 while I was in a conversation and the people I was with knew nothing about the seizure. If I was having a complex partial which stemed off my focal motor epilepsy I might have to wait a little longer because until the seizure completely subsides I can not work with my right hand.
Joe
Re: Would anyone like to share something about their epilepsy?
Submitted by UH_Warrior13 on Sat, 2013-11-02 - 14:50
honolulu, O'ahu, Hawai'i
Aloha,
My epilepsy started when I was a school aged child but no one pickd up on it they ll just chalked it up to a behaiour problem.
I had very bizarre behaiour.
I went on thru grade school middle chool and HS and part of college with it not knowing what it was.
It was NOT caught until april of '03 I had a lot of testing including multiplt typed of EEGs and other types of tests.
I have been thru 2 EMUs uck on the the first one and that was 10days long and then they said it was inconclusive my now neurologist I have had now for almost 7 years got mad and ran his own VEEG and I had 2 staring szs the first night in, and 3 MAJOR complex Partial szs random thru the following 5 days out of the 6 I was in. All of the szs had to be stopped with IV Ativen. I have been on mny meds and now have settled on 10 almost 11 yrs on Lamictal, but that is up at 800 mgs, 200 mgs of Topamax, and 3 mgs Klonopin. I also have a VNS. Its settings just got chagend from every 5 minutes OFF and 20 seconds ON to 1.8 muinutes OFF and 21 seconds ON.
I had a car accident on dec 3rd of '02 and hit a tree head on, suffered surreed whip-lash, a mild head injury and multiple broken bones. A broken ankle and a broken collar bone and sereal other ones.
NO one know if I had a sz while driving or blacked out. I was taken to the hospital and kept in the neuro observation unit for a few days.
8 months later I had my fisrt visable sz a grand mal, it was the night before my college graduation. the next day was a total washout.
The epielspy was finally caught by a snotty neurologist that ran 2 sleep-deprived EEGs and the first one had some nasty activity and the second one was even wrost thean the first one which is how I ended up in that first EMU.
The activity was showing from the antior part of the left temporal lobe. I was not a candidate for surgery and was slipping downhill fast so they put a VNS in me. I stated resonding to it with in 2-3 months. I have had it for 6 yrs replaced onece.
I was having 10-12 szs a day before that was impalanted.
and ny recovery time was an hr.
now I am having abur 3-4 szs a month and recovery time is about 20 minutes.
Nancy
honolulu, O'ahu, Hawai'i
Aloha,
My epilepsy started when I was a school aged child but no one pickd up on it they ll just chalked it up to a behaiour problem.
I had very bizarre behaiour.
I went on thru grade school middle chool and HS and part of college with it not knowing what it was.
It was NOT caught until april of '03 I had a lot of testing including multiplt typed of EEGs and other types of tests.
I have been thru 2 EMUs uck on the the first one and that was 10days long and then they said it was inconclusive my now neurologist I have had now for almost 7 years got mad and ran his own VEEG and I had 2 staring szs the first night in, and 3 MAJOR complex Partial szs random thru the following 5 days out of the 6 I was in. All of the szs had to be stopped with IV Ativen. I have been on mny meds and now have settled on 10 almost 11 yrs on Lamictal, but that is up at 800 mgs, 200 mgs of Topamax, and 3 mgs Klonopin. I also have a VNS. Its settings just got chagend from every 5 minutes OFF and 20 seconds ON to 1.8 muinutes OFF and 21 seconds ON.
I had a car accident on dec 3rd of '02 and hit a tree head on, suffered surreed whip-lash, a mild head injury and multiple broken bones. A broken ankle and a broken collar bone and sereal other ones.
NO one know if I had a sz while driving or blacked out. I was taken to the hospital and kept in the neuro observation unit for a few days.
8 months later I had my fisrt visable sz a grand mal, it was the night before my college graduation. the next day was a total washout.
The epielspy was finally caught by a snotty neurologist that ran 2 sleep-deprived EEGs and the first one had some nasty activity and the second one was even wrost thean the first one which is how I ended up in that first EMU.
The activity was showing from the antior part of the left temporal lobe. I was not a candidate for surgery and was slipping downhill fast so they put a VNS in me. I stated resonding to it with in 2-3 months. I have had it for 6 yrs replaced onece.
I was having 10-12 szs a day before that was impalanted.
and ny recovery time was an hr.
now I am having abur 3-4 szs a month and recovery time is about 20 minutes.
Nancy