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[scooper78]

Hello my name is Sam and I found out that I have had epilipsy since I was 8 years old. My epilipsy stems from when I was 8 years old I was hit by an ATV while walking on the street and I was in a coma for about 6 days. I was having auras as my doctor has called them since I was 8 where I have felt empty, nervous and would just freeze up for a few moments. I always thought that I was just afraid of dying since that is what I thought of while having those auras but it wasn't until I had my second grand mal seizure that they realized that my wife researched auras and I found out that I have been experiencing those for 20 years now. I am currently on Keppra and Depakote but still have 2-4 auras a week. I work in a stressful job and I put a lot of pressure on myself which wears me down quite a bit. My llast grand mal seizure was 2 years ago but I still cannot drive as I am afraid to drive on highways. I constantly feel nervous and don't know if it is anxiety or my epilipsy. I am still learning about epilipsy and I wish I could figure out a way to control this nervous feeling. I am happy to be on this site as it is great to know that their is such a good resource out there for people with epilipsy to use and share experience with one another. I have realized that no one really understands the strange symptoms that I describe when I have an aura. Thank you for reading my message.

 

[epileric]

Welcome Sam

I was born with seizures but was lucky enough to have a parent in the medical profession who recognized what a seizure was immediately. I'm actually surprised how many people have had seizures for years & never been diagnosed.

I do know what it's like to not be sure of why certain emotions (like nervousness) arise. It could be the epilepsy but keep in mind that it can also be the side-effects of your medications. I know when I was on keppra my emotions were very extreme.


Meanwhile, make yourself at home, check out the different rooms we have. We've even got a padded room where you can vent all your stresses, anger & frustrations. Isn't that cool?

 

[Nakamova]

Hi Scooper78, welcome!

I am sorry about your stress -- are there any particular ways you have to deal with it? Sometimes just taking a half-hour out of your day to take a walk, or look at nature -- or even do nothing at all -- can help. Also, it's possible that your meds are contributing to your anxiety. Keppra is known to cause moodiness and crankiness ("Kepprage").

Feel free to ask questions, or vent or chat -- CWE is a great resource for feedback, advice, empathy, and support.

Best,
Nakamova

 

[scooper78]

Thank you for the reply. This website is great and I am happy that I can ask questions and people realize what I am talking about.

 

[scooper78]

Nakamova,

I work out pretty intense for about 30 minutes to an hour a day but that is about all I do to break my day up. I work out of my house so I am constantly in front of the computer or on the phone which can be stressful. I find myself becoming more worried about having an aura since I have them so frequently which makes it hard to relax.

Thanks,
Sam

 

[Nakamova]

Hi Sam --

I also work at home all day, also stuck in front of the computer. I make sure to take a long walk, either in the middle of the day or at the end, to give my eyes and back a break. And I have iTunes going on my computer with good sounds to help me de-stress. I have one half-hour piece that is just the sound of a babbling brook -- it's neutral, so I don't have to turn it off if a client calls, but it's soothing, and in theory, good for the brain.

 

[epileric]

I bookmarked this for when I'm stressed. I find it helps but sadly it's when I'm stressed that I often forget I have it bookmarked.

http://www.soundsleeping.com/miniplayers.html

 

[CopingMom]

New Here too -

Hi Sam,
My son is 12 years old and since he has been on Keppra has exhibited extreme anxiety - plus rage. I hope that maybe you can change medications?

 

[scooper78]

Hello CopingMom,

Thanks for the message. Is Keppra helping your son control his seizures? The doctors tried me on Keppra at first and then trileptal (spelling), vimpat, and then back to Keppra/Depakote. How much Keppra does your son take? The doctors have said that they will keep playing with my medications and will keep running tests but I am not confident that they will be able to control my auras.

 

[CopingMom]

We have been on the Keppra since August 3 - and have been seizure free since that time. However, beginning on Saturday morning he's been having numbness in his left cheek - and he's had it every day since. I am afraid we're looking at a seizure cluster that's on the way.

 

[Endless]

Welcome, Sam! I'm glad you found us here.

 

[douglas]

Hello my name is Sam and I found out that I have had epilipsy since I was 8 years old. My epilipsy stems from when I was 8 years old I was hit by an ATV while walking on the street and I was in a coma for about 6 days. I was having auras as my doctor has called them since I was 8 where I have felt empty, nervous and would just freeze up for a few moments. I always thought that I was just afraid of dying since that is what I thought of while having those auras but it wasn't until I had my second grand mal seizure that they realized that my wife researched auras and I found out that I have been experiencing those for 20 years now. I am currently on Keppra and Depakote but still have 2-4 auras a week. I work in a stressful job and I put a lot of pressure on myself which wears me down quite a bit. My llast grand mal seizure was 2 years ago but I still cannot drive as I am afraid to drive on highways. I constantly feel nervous and don't know if it is anxiety or my epilipsy. I am still learning about epilipsy and I wish I could figure out a way to control this nervous feeling. I am happy to be on this site as it is great to know that their is such a good resource out there for people with epilipsy to use and share experience with one another. I have realized that no one really understands the strange symptoms that I describe when I have an aura. Thank you for reading my message.

hi and welcome to the forums.

yeah, your story sounds similar to mine. i had these "spells"/episodes throughout my life ever since i could remember. these feelings of unease and also strange ringing noises and odd sounds, but i never really bothered to tell anyone or pay any attention to them because i figured they weren't a big deal. the sounds and feelings would just go away on their own. when i got older and i started getting grand mals, thats when i finally went to see a real neuro and got a diagnosis and meds.

in retrospect, i realize that what i had was a condition which was mild when i was a child and gradually was getting worse and worse until it escalated to grand mals/tonic clonic seizures. count yourself lucky. i do. i had my first unexpected grand mal out of the blue in my living room. but it could have just as easily been while i was driving home from work doing 100 on a highway and died that first time i had one. i didn't know i had this condition until it hit me out of nowhere.

the stressful job is probably not a good combination with your condition and the meds you are taking. but you have to succumb to your ingrained survival instincts and figure out a way of how to deal with it and hold on to your job. its hard to get (and keep!) a job when you have this type of condition.

also, don't forget, these meds are not cheap. these meds are also very strong meds and if you take them for a long time (20 or 30+ years) there is a good chance that they will probably have some sort of noticeable side effect on you. but maybe not. nothing is a sure thing. just work as much as you can while you can and don't take it for granted and assume that you will retain all your physical and mental capabilites as you approach retirement age -- especially given the condition and the meds you have to take for it.

i dont want this to sound like i am bashing meds. it the better alternative. if you dont take them, you run a serious risk of having a seizure and seriously seriously injuring yourself.

 

[Endless]

i dont want this to sound like i am bashing meds. it the better alternative. if you dont take them, you run a serious risk of having a seizure and seriously seriously injuring yourself.

Don't worry about bashing the meds, Douglas. We all do it. I've been struggling with the same question because my side effects have been pretty bad. So, what's worse? Seizures or the meds? I've come to the conclusion that the seizures are far worse, though I dream of being medication-free some day. In the meantime, my goals are much more modest. I just want to stay awake for more than 4 hours at a time, and be able to go on outings with my family that last more than a couple of hours. But it beats complex partials where I'm wondering where I was and what I did, or doing something where I get hurt. Or, the fear seizures. Those were the worst.

 

[Cint]

you run a serious risk of having a seizure and seriously seriously injuring yourself.

Yes, one can suffer a serious injury from a bad seizure while not taking any medication(s). Before I was correctly diagnosed, I experienced my first tonic/clonic while stepping out of the shower and as I fell, I hit the hot water and suffered 2nd and 3rd degree burns on my arm and back. I had been to a doctor because I was experiencing these "weird" sensations that I now realize were CP seizures. That fool didn't take it seriously.

Originally Posted by Endless

So, what's worse? Seizures or the meds?

For me, the seizures are much worse and can be deadly. I can deal with just the CPs much better than when they generalize into a tonic/clonic and I'm sore for days and don't remember my name or my family for a day or two. And I've fallen many times and suffered some serious and not so serious injuries from those stupid seizures.

 

[scooper78]

Douglas,

I hear you that we are lucky that neither one of us experienced a grand mal while driving. My fiancee now my wife found me in the closet when I had my second grand mal but when I had my first grand mal I was by myself. The job is something tha I am definitely trying to hang onto but it is very hard because it is so hard to stay motivated throughout the day and especially in sales keep my thoughts clear while making a sale pitch.

I have been to about 6 neurologists in the past year and they all want to put me on different medication and some have talked about the surgery while others say that I don't qualify because of the amount of bruising that I have on my brain. I drink coffee and take naps afterward, I wake up at 5:30am after going to bed at 9pm and I want to go back to bed....bottom line Keppra, Vimpat, Trileptal and Depakote all seem to have the same side affects I am tired all of the time, it is hard to get clear thoughts, and the I am still having the same number of auras if not more than I was before I started taking the pills.

Does anyone taking Keppra have trouble sleeping through the night? I can fall asleep easily but it is almost impossible to stay asleep and then every morning I never feel refreshed. Does anyone else have this problem?

 

[douglas]

Douglas,

I hear you that we are lucky that neither one of us experienced a grand mal while driving. My fiancee now my wife found me in the closet when I had my second grand mal but when I had my first grand mal I was by myself. The job is something tha I am definitely trying to hang onto but it is very hard because it is so hard to stay motivated throughout the day and especially in sales keep my thoughts clear while making a sale pitch.

I have been to about 6 neurologists in the past year and they all want to put me on different medication and some have talked about the surgery while others say that I don't qualify because of the amount of bruising that I have on my brain. I drink coffee and take naps afterward, I wake up at 5:30am after going to bed at 9pm and I want to go back to bed....bottom line Keppra, Vimpat, Trileptal and Depakote all seem to have the same side affects I am tired all of the time, it is hard to get clear thoughts, and the I am still having the same number of auras if not more than I was before I started taking the pills.

Does anyone taking Keppra have trouble sleeping through the night? I can fall asleep easily but it is almost impossible to stay asleep and then every morning I never feel refreshed. Does anyone else have this problem?

well, that's sort of what neuro's do most of the time. they write prescriptions. high priced pez dispensers i like to call them.

when i switched meds, i experienced an increased in what you like to call 'auras', but i just call it mini partial seizure. the brain is misfiring. it's just that you are able to maintain control of your bodily functions and consiousness. but the brain is still behaving abnormally.

i though it was a sign that the meds were not the right ones and not working for me. but after a while the sudden increase in partials went away. it took a while. maybe between 9 to 12 months. i am not sure exactly how long. my point is, if you plan to stick it out with a med, you might have to give it some time. more than a few months.

 

[douglas]

Don't worry about bashing the meds, Douglas. We all do it. I've been struggling with the same question because my side effects have been pretty bad. So, what's worse? Seizures or the meds? I've come to the conclusion that the seizures are far worse, though I dream of being medication-free some day. In the meantime, my goals are much more modest. I just want to stay awake for more than 4 hours at a time, and be able to go on outings with my family that last more than a couple of hours. But it beats complex partials where I'm wondering where I was and what I did, or doing something where I get hurt. Or, the fear seizures. Those were the worst.

med free someday. yes, it's possible. i hope it happens to all of us. i personally would be content if i got to keep all of my senses and physical bodily capabilities past 55 or 60.

for me the seizures aren't painful and i don't fear them. i am more worried about collateral damage. what might happen to my head/body/arm/leg while i am having one. i also fear that my little kids might see me while having one.