Epilepsy Foundation

Hey all,
First, I wanna apologize for the length of this email, I just started typing and the word vomit, and thoughts just spilled out of me. Okay here we go....
I just want some people to talk with, sometimes I feel like this forum is the only place I can go to where people actually understand what I am going through.
I have actually recently thought about finding someone to talk to, just cause I want someone to listen, has anyone ever thought of this, or done this... did it help? I am kinda at whits end right now. I am a very happy and optimistic person, just sometimes this whole situation can get me down, as I am sure everyone can relate to.
This is so hard to live with epilepsy. It has only been the last year and half or so where I actually have been exposed to grand mal epilepsy. I grew up my whole life with absence seizures, and then one day when I was 21, my whole life changed.
I am now 22 and I cant enjoy most of the things other 21 year olds can. I had to change my lifestyle, ya know, making sure I am not up to late, not over exerting myself or getting stressed, having to plan my night accordingly so I will be somewhere where my 7 pills are available, having to find rides to the grocery store since I cant drive. I have had seizures anywhere from sitting at the breakfast table, walking across the street, laying on the couch at home, during the middle of the Eugene marathon I was trying to run, In the middle of a physics final in a classroom of 140 kids (where most of them couldnt even explain what epilepsy actually is). I know  everyone here is struggling through there own battles and most of us can probably relate to getting the short end of the stick when it comes to every day living. This last one I had was particularly hard for me, it was my tenth seizure after 3 months free. I thought I was so close to beating this, and getting it controlled, and then BAM, that thought is out the window. I am full time student at the university of oregon, I am a senior pre-med student, and this year school has become a huuuuge struggle for me. I have always been a good student who got pretty good grades. While I am still maintaing my fairly good grades, I am having to study at least three times more than I did before I started having seizures. The roughest part for me is the lack of my short term memory. I am not sure if its my medication, lamictal XR 800 mg, (anyone taking that med, I heard thats a pretty big dose, you guys having any of these problems?) Or who knows, maybe my lack of a short term memory is just due to having so many seizures recently. I have generalized frontal lobe epilepsy, and so memory shouldn't be the problem, from what I hear its much more common in those with temporal lobe epilepsy. But anyway... I honestly cant remember ANYTHING anymore, adapting to losing my short term memory has by far been the hardest thing that I have had to deal with, and on top of that, I have definitely lost my entire ability to spell (thank god for spell check haha). Without exaggerating all my friends laugh at me (although they all are very understanding, and its a friendly humor) because I will ask the same question three days in a row, or tell a person the same thing 2 or 3 times in one day. I will forget what I needed at the grocery store, or what/ and when assignments are due in class. I am now having to keep a notebook with me everywhere I go just so I don't miss anything. [on a side note: let me tell you this is a pretty ridiculous notebook, on any given page there could be a reading assignment, email reminders, grocery lists, who I am supposed to call, important conversations I had with people ect haha my whole life to-do list on one page, but whatever, if this is what I have to do to keep my head on straight I guess its what I gotta do... right??]  I try and keep a positive attitude about having epilepsy and most of the time I do, but sometimes it gets really hard. I wanna beat this and go back to living a semi-normal life, or at least a life where I can, everyday, enjoy the little things. I am sure everyone in this forum can relate, its just nice to put my thoughts out there and its comforting to know that somebody out there is reading this, who might be going through the same kind of thing.
Maybe one day, we will be able to beat this, but for now I am just glad I have a place where I can vent.
The best to you all,
Shelane

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I'm on 2500mg Keppra, 200mg Topamax, and 1950mg Trileptal. I can relate to the telling somebody something more than once thing. I ask people often, "Did I tell you that already?" They just say yes or no. My memory loss isn't as bad as yours, though. I think it probably does have something to do with the drugs. My memory was great before I went on them in 2008. And go ahead an vent!
Wow, that is a good venting session! I think most of those things I just don't put them in words. I have found recently that Epilepsy is a really *ucked up disease. I went 6 years without a seizure and now I have had 3 in one year. Oh yeah, did I mention that I need my drivers license for my job? Thankfully my job is working with me but I always have to figure out rides. I hate not being independent. My last seizure sucked because my husband saw me have one for the first time. He told me later that he was so scared and felt like I was going to die (even though he knew I would be ok). Now he worries about me even more and wants to know where I am at all times. I understand so it doesn't irritate me but it would be nice to take a bath and not have someone checking on you every two minutes to make sure you are still alive! I am on 800mg of Lamictal and 500mg of Keppra. The Keppra was recently added so I am fairly new to that. My doctor wanted to put me on Lamictal XR but my insurance is terrible so they won't cover it. I even appealed the decision and my doctor wrote a letter. I am glad that I am not in school anymore. I always had that fear of having a seizure in a lecture hall. I know you mentioned that you now have Grand Mal seizures but used to have Absence. When I was younger I had complex partial and now I have grand mal. I don't know why. They have done every test in the book and the doc says my tests come out fairly normal. So what the heck is causing this? Anyway, I just felt like adding to your venting session. I know how you feel and hopefully someday these docs find the answer we are all looking for. Until then, try and stay positive. I know how hard that is but if you ever need to vent again, I will be here to listen.
I'm out!
Amber
GO AHEAD AND VENT!!! I have found that there has to be at least one place that you can vent or you will go mad. I cant say that I have been where you have but I have had E since I was seven months old and I know what it feels like when you want to give up. I am currently going through a lot because me E has caused a bout of Insomnia. I literally cant sleep most nights .I dont remember the last time I even slept 8 hours total let alone all at once. All I can say to you is that VENT VENT VENT VENT VENT VENT or you will go mad....and dont let your friends joke about your E. it will begin to hurt after a while and then it will be too late...trust me...
I am also a college student, a third year at the university of california riverside. I work part time and go to school full time and I know exactly where you are coming from :)
Remember to enjoy the little things or the bad things will take over your life :)
Short-term memory is my biggest problem as well. It can be so frustrating! As others have already mentioned, venting is a good thing! I do it all the time.

Epilepsy just sucks, it sucks bad. Every time I think about how much it sucks, I get sad and have to remind myself that there is nothing more I can do about it. It sounds like you're adjusting to the best of your ability and you can't expect anything more from yourself. It's a struggle that people like us will have to deal with, but it only makes us stronger!
I am on 4000 mg of Keppra XR, 1050mg of
lamictal and 900 mg of Trileptal.  All in, that 
is 21 1/2 pills.  People always say they are 
afraid of the police catching them seizing in
a movie theater.  I am more afraid of them
charging me with a drug offense!  It looks
pretty sketchy carrying that many pills
in a plastic bag.  I have even heard of 
people being charged for carrying their
prescription without the bottles.  My pharmacy
sells me the actual bottles that the
pills come in (not the orange ones with the 
safety top).  This issue has crossed my mind 
several times in high school; my high school
had a strict anti drug policy.  They would 
suspend people for 45 days for drug 
possession including pain meds and Rx not
dispensed by the school "nurse". I carried my 
clonopin tablets with me in my pocket anyway.
I thought, screw it let them suspend me!  This
drug was to be used immediately following an 
aura.  

Hi Shelane!  Sorry to hear about your seizures getting worse.  I've had CP seizures since age 7 and am now over 60.  I've had a long time to get used to seizures, but have still lived the good life.  You can too.  The 2 things that have helped me most are a VNS  and sense of humor.  I do all kinds of stupid things during seizures. I do all kinds of stupid things during seizures during but try to laugh it off off afterwards (if I can). Memory has gotten to be a real pain, but....  Hang in there & keep the faith!!  Rich

Hi Shelane,

 

I hear ya . I have a bit of short term memory probs but it sounds like you have it really bad. Im sorry to hear that. I am also on  Lamictal. I take 900mgs/day but my short term memory seems to be the same.

 

keep the Faith

Shelane,

 

I'm on Lamictal too-250mg morning/300mg nightly. I've been on Dilantin for a few years which was pretty awesome for my memory lol. So I feel yeah. You're definitely not alone in this. Everytime you start feeling down, just remember we're all in this together. You can message me if you wanna chat (I have some funny E moments to share that'll make you laugh)

 

Best,

Jeremy

 

  It is good to hear or understand what is like.  There are others can relate to you.  The amount of  medication you is similar to the amount of medications others take.

The one thing I have come to grips with are you can't live your sife having seizures, or contol of them  on medication, any amount.  Easy medicine I now infact I have trouble doing the same thing over and over in my mind.

 

 

 Here the story of my life, and what others might feel like, related to axiety and seizures. 

 

Talking about venting

  •                                             Beautiful
  • I hope this can let you understand me, and others that have very difficult issues in their lives and why we act and react some times.  I care about you all very much. There are some things you just can't understand.

    Regardless of what your opinion or thoughts on the subject are your opinions and only your opinions.
  • This is the life we live.

    People walk up to me sometimes and ask me, why the sarcasm all the time. Why do you lash out at others and why do you have such an aggressive attitude? Why all the negative comments and negative attitudes, why do you lose things all the time.
  • 1980 I was six years old. My parents were told that their son had cancer. A brain tumor with only a 15% chance of a survival rate. This was not easy for my parents to handle knowing their son might die. I went through radiation, chemo-therapy. I lost my hair, lost weight, my skin tone became pale, and sick all the time.  This was devastating for me.  It was embarrassing to walk around without any hair, pale skin amongst other issues.  I stopped growing in height at a young age and was picked on a lot.
    I made it through the past issues that came along with living with cancer and hey, I survived.

    The year of 2000 came along. I found out that I had another brain tumor. The tumor was in the occipital lobe of my brain. Another obstacle in my life I had to deal with, but again I made it through and was in good spirits again. Four years later I had a stroke, what? Another obstacle to deal with. I began to move on with my life, worked at a very reputable job and was doing well. I began to see florescent lights around the place and had bad headaches. Don’t worry others would tell me, you are having migraine headaches. A few days later at work I had a Grand Mal seizure. Seizures?
  • Do you know what it is like to wake up every day and worry about having a seizure?  Not being able to talk when you need help, or not being able to walk.  This is a stress we live with every minute of every day. Worry, worry, worry. These aren’t an everyday thing, and then learn that anxiety itself can cause or stimulate seizure activity.   Maybe I don’t have all the facts correct, but his is my perception of it.
  • I can’t wake up every day and worry about taking my medication on time let alone, having a seizure at all, but I can’t worry about that because again anxiety can cause seizures. So let me ask you this. Do you think that worrying about having seizures every day, let alone having seizures at all is fun or easy to deal with?  
  •  Do you know what it is like every day knowing you can’t get up and walk down the hall because your legs don’t work or have a discussion at the breakfast table because you can’t talk.  I am sure many of you are thinking well, there is brail, but can you understand, of course you don't know but this is our life not yours.
  • Others can give me advice about how to handle this or handle that or try this or try that. The lack of independence is starting to bother me now, but I can’t worry about that or even stress about that because again, anxiety can cause seizures. Let alone stress about your medical background because again anxiety can cause or stimulate seizures. You can’t even imagine what it’s like
    - So now I can’t stress about having cancer, having a stroke, and now having seizures. To this day I still am picked on, made fun of, because I am lacking in the height department etc.  Wait it is not over yet. I come to learn that I have another brain tumor, one that I have to this present day, but I can’t worry about having another brain tumor because, what do you think? Yes anxiety can cause seizures. I take 2100mg of anti-seizure medication in the morning, 300mg anti-medication in the afternoon and 1700mg of anti-seizure medication at night. You do the math. Others ask me why I am so tired or take so many naps. Hmmm how much medication do I take, and this is the heavy duty medication, (anti-seizure medication), you don’t take this for headaches. Others deal with the same and similar issues.  Can you now try to understand why we become angry at times? The medication affects memory, cognitive thinking, perception, balance, multi-tasking and other issues.  We can’t get a job because we can’t do any of this anyway
  •  We apply for disability but then can’t look for a job which we can’t do anyway and then we become completely dependent on others to do the “hard” work for us because we have trouble understanding the difficult process, because of our disability.  I am trying very hard to do what is best for me what is best for everyone else but what hurts the most is that nobody seems to understand what it’s like, or even care. Oh I forgot, you can’t understand and never will, unless.... but I don’t wish that upon anyone because then you might know what it’s like.

  • So, making a very long story short. I am sorry to others whom may think we are being “short” with others or may have a bitter attitude with others, or having a negative attitude with or think we are just being rude. What we have been through and continue to go through in our lives has made us bitter which completely reflects on others around us.  Dealing with these issues is hard to handle and it does impact our attitude, especially toward others who argue or complain about or worry about petty things. All of things that are minor compared to what others have been through but I can’t worry about it because, what can it lead to? This is something we deal with every day.  What I am meaning to say is, I am sorry. Want to trade shoes?
    So don't judge us or tell us what we are doing wrong instead or what is right. This is our emotions that have been fucked with; maybe that has affected our reasoning.  Believe me, we know others care and want what is best for us, you have no idea. Do you know how your self-esteem is affected by others telling us do this or that, or “let me help me with this or that.” Regardless of what you think this affects our self-pride.  We are aware of the fact that others are just trying to help.
    - Now, we don’t need your pity.   Just try to understand, but you can’t. Kind of like a catch 22. Well,
      Sometimes we do get depressed, get pissed off sometimes. Then we are fine, a rollercoaster of emotions.  There is not anything you can do unless you want to ... , but you wouldn’t want to do that,  trust me. The response we hear too often is "Oh but “then why do you write this stuff and send it to us?”   I guess it is the best way to describe to you what it’s like. I have always been able to describe etc. through writing. If you don’t want me to write you anymore about this negativity I won’t. Why you ask? Did you read the letter? Oh yeah, don’t worry....get it?
    • Oh I received my MRI, result which was positive, the brain tumor isn’t growing.  Now I don’t have to worry so much, or do I.  Oh yeah don’t worry right.
      • To talk about venting, others may feel similar, or can relate to me.   SORRY for the leanth of what I wrote but I  hope you can atleast read it, and respond back.  You don't have to tell me your life or struggles in your life but this is bothering me and I need some to talk to.

 

  •                                             Beautiful
  • I hope this can let you understand me, and others that have very difficult issues in their lives and why we act and react some times.  I care about you all very much. There are some things you just can't understand.

    Regardless of what your opinion or thoughts on the subject are your opinions and only your opinions.
  • This is the life we live.

    People walk up to me sometimes and ask me, why the sarcasm all the time. Why do you lash out at others and why do you have such an aggressive attitude? Why all the negative comments and negative attitudes, why do you lose things all the time.
  • 1980 I was six years old. My parents were told that their son had cancer. A brain tumor with only a 15% chance of a survival rate. This was not easy for my parents to handle knowing their son might die. I went through radiation, chemo-therapy. I lost my hair, lost weight, my skin tone became pale, and sick all the time.  This was devastating for me.  It was embarrassing to walk around without any hair, pale skin amongst other issues.  I stopped growing in height at a young age and was picked on a lot.
    I made it through the past issues that came along with living with cancer and hey, I survived.

    The year of 2000 came along. I found out that I had another brain tumor. The tumor was in the occipital lobe of my brain. Another obstacle in my life I had to deal with, but again I made it through and was in good spirits again. Four years later I had a stroke, what? Another obstacle to deal with. I began to move on with my life, worked at a very reputable job and was doing well. I began to see florescent lights around the place and had bad headaches. Don’t worry others would tell me, you are having migraine headaches. A few days later at work I had a Grand Mal seizure. Seizures?
  • Do you know what it is like to wake up every day and worry about having a seizure?  Not being able to talk when you need help, or not being able to walk.  This is a stress we live with every minute of every day. Worry, worry, worry. These aren’t an everyday thing, and then learn that anxiety itself can cause or stimulate seizure activity.   Maybe I don’t have all the facts correct, but his is my perception of it.
  • I can’t wake up every day and worry about taking my medication on time let alone, having a seizure at all, but I can’t worry about that because again anxiety can cause seizures. So let me ask you this. Do you think that worrying about having seizures every day, let alone having seizures at all is fun or easy to deal with?  
  •  Do you know what it is like every day knowing you can’t get up and walk down the hall because your legs don’t work or have a discussion at the breakfast table because you can’t talk.  I am sure many of you are thinking well, there is brail, but can you understand, of course you don't know but this is our life not yours.
  • Others can give me advice about how to handle this or handle that or try this or try that. The lack of independence is starting to bother me now, but I can’t worry about that or even stress about that because again, anxiety can cause seizures. Let alone stress about your medical background because again anxiety can cause or stimulate seizures. You can’t even imagine what it’s like
    - So now I can’t stress about having cancer, having a stroke, and now having seizures. To this day I still am picked on, made fun of, because I am lacking in the height department etc.  Wait it is not over yet. I come to learn that I have another brain tumor, one that I have to this present day, but I can’t worry about having another brain tumor because, what do you think? Yes anxiety can cause seizures. I take 2100mg of anti-seizure medication in the morning, 300mg anti-medication in the afternoon and 1700mg of anti-seizure medication at night. You do the math. Others ask me why I am so tired or take so many naps. Hmmm how much medication do I take, and this is the heavy duty medication, (anti-seizure medication), you don’t take this for headaches. Others deal with the same and similar issues.  Can you now try to understand why we become angry at times? The medication affects memory, cognitive thinking, perception, balance, multi-tasking and other issues.  We can’t get a job because we can’t do any of this anyway
  •  We apply for disability but then can’t look for a job which we can’t do anyway and then we become completely dependent on others to do the “hard” work for us because we have trouble understanding the difficult process, because of our disability.  I am trying very hard to do what is best for me what is best for everyone else but what hurts the most is that nobody seems to understand what it’s like, or even care. Oh I forgot, you can’t understand and never will, unless.... but I don’t wish that upon anyone because then you might know what it’s like.

  • So, making a very long story short. I am sorry to others whom may think we are being “short” with others or may have a bitter attitude with others, or having a negative attitude with or think we are just being rude. What we have been through and continue to go through in our lives has made us bitter which completely reflects on others around us.  Dealing with these issues is hard to handle and it does impact our attitude, especially toward others who argue or complain about or worry about petty things. All of things that are minor compared to what others have been through but I can’t worry about it because, what can it lead to? This is something we deal with every day.  What I am meaning to say is, I am sorry. Want to trade shoes?
    So don't judge us or tell us what we are doing wrong instead or what is right. This is our emotions that have been fucked with; maybe that has affected our reasoning.  Believe me, we know others care and want what is best for us, you have no idea. Do you know how your self-esteem is affected by others telling us do this or that, or “let me help me with this or that.” Regardless of what you think this affects our self-pride.  We are aware of the fact that others are just trying to help.
    - Now, we don’t need your pity.   Just try to understand, but you can’t. Kind of like a catch 22. Well,
      Sometimes we do get depressed, get pissed off sometimes. Then we are fine, a rollercoaster of emotions.  There is not anything you can do unless you want to ... , but you wouldn’t want to do that,  trust me. The response we hear too often is "Oh but “then why do you write this stuff and send it to us?”   I guess it is the best way to describe to you what it’s like. I have always been able to describe etc. through writing. If you don’t want me to write you anymore about this negativity I won’t. Why you ask? Did you read the letter? Oh yeah, don’t worry....get it?
    • Oh I received my MRI, result which was positive, the brain tumor isn’t growing.  Now I don’t have to worry so much, or do I.  Oh yeah don’t worry right.

 

My memmory is poor infact I don't have a short term mermory at all.

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