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  #41  
Old 02-03-2008, 04:04 PM
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Originally Posted by brain View Post:
... I'm one stubborn
strong-willed, high spirited woman without a second thought!
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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  #42  
Old 02-03-2008, 05:46 PM
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I'm also very strong willed. Probably too strong willed to put it bluntly. This stubborness has helped me focus on my inner feelings, frustrations and successes.
I see nothing wrong with that approach. I focus on the frustrations mainly because they will cause a seizure if I cannot handle them well.
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  #43  
Old 02-04-2008, 06:36 PM
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I have tried twice to commit suicide. It's not a joke. Once on Depakote as a teen. And once on an antideppressant. My doc watches me very closely. I will not lose to epilepsy. First because of my son. Who needs a positive attitude. The same one I grew up in. I am an Aries to. I have already won. I might die from it some day. But I won't choose to die from it. I am beautiful , strong, and positive.
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  #44  
Old 02-08-2008, 07:31 PM
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AED & suicidal thoughts


Epileptic Seizure Alarm

Suicide Risk From 11 Epilepsy Drugs
FDA Warns That Epilepsy Drugs May Double Risk of Suicidal Behavior, Thoughts
By Daniel J. DeNoon
WebMD Medical News Reviewed by Louise Chang, MD
Jan 31, 2008 -- The FDA warns that 11 epilepsy drugs double a person's risk of suicidal behavior or thoughts, although the overall risk remains small.

The warning comes from an FDA analysis of suicidality -- suicidal behavior or thoughts -- in placebo-controlled studies of 11 drugs known collectively as "antiepileptics." The drugs are used to control seizures and to help control the symptoms of some psychiatric disorders.

"All patients who are currently taking or starting on any antiepileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression," the FDA warned in a letter to health professionals.

In the clinical trials, patients receiving inactive placebo pills had a 0.22% incidence of suicidality. Those receiving the epilepsy drugs had a 0.43% incidence of suicidality -- twice that of placebo recipients, but still a very small risk.

The drugs were relatively more likely to be linked to suicidality when used to treat epilepsy than when used to treat psychiatric disorders or other conditions.

The 11 drugs cited by the FDA are:

carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
felbamate (marketed as Felbatol)
gabapentin (marketed as Neurontin)
lamotrigine (marketed as Lamictal)
levetiracetam (marketed as Keppra)
oxcarbazepine (marketed as Trileptal)
pregabalin (marketed as Lyrica)
tiagabine (marketed as Gabitril)
topiramate (marketed as Topamax)
valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
zonisamide (marketed as Zonegran)
Some of these drugs are available in generic forms.
So scary....

Amy

Last edited by Bernard; 02-09-2008 at 09:42 AM. Reason: merged post into existing thread
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  #45  
Old 02-09-2008, 02:24 PM
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Unhappy Didn't mean to say the wrong thing


I am also strong willed and stubborn, but right now I AM TIRED.

I WAS BORN SICK, NOT WITH EPILEPSY, BUT WITH OTHER VARIOUS PROBLEMS, I WAS BORN FIGHTING. I AM 35 YRS OLD AND HAVE HAD TO FIGHT FOR MY HEALTH, MY LIFE, MY MENTAL HEALTH, OR SOMETHING IN MY LIFE ONE WAY OR ANOTHER EVERY DAY.

Just when things started to get easier, my life finally started getting good, I was finally HAPPY, and could accept the things I had gone through in my life, BAM like a shot in the head.

I have been fighting and fighting and fighting, now my own son is afraid to be alone with me, I can't drive, after fighting for two years to stay at work the Dr. finally said Erin you just can't work anymore, I have to take you out " you should be proud, you've worked so hard, you didn't just give up, I've never seen anyone fight as hard as you" (I didn't feel proud, I felt like a failure), I to have had to get food stamps, medicaid. Then in November my Dr tells me I need to apply for SSDI, SSI, and something else because I may never be able to go back to work agian. ME? I went to collage, I worked 2 part time jobs and took extra classes, just to go to collage, now I may never work agian?

I tried to commit suicide twice when I was younger, but now I would never do that, no matter how depressed I am, as unhappy as I am right now I'm not that selfish, I have become a burden on those I love, but it would crush them, and with the exeption of my son and my father epilepsy has brought me closer to my loved ones. I would of course like to be close to my son agian, sometimes it's there, but there are so many times that he doesn't want to be in our home.(alone with me, he's scared)

I just want people to know that it is OK to feel depressed, epilepsey can be overwhelming, for me I have a history I have depression, panic disorder, anxiety disorder, obssesive compulsive disorder w/ agoraphobia, that's what I meant when I said I had just started enjoying life, I was finally happy, even with all my mental and health disorders I had found 2 Dr.'s to help me, and me and Austin where having a good time of it. so when this haappened at first it was no big deal, but the longer it's gone on, and the more I've "lost" I've gotten tired, depressed, and a bit jaded, and most of that has happened within the last 6 months, so I NEVER mean to offend anyone, or say the wrong thing....I don't know I'm just babbling and I'm crying so it's hard to see, I'm just going to stop now.

Last edited by Bernard; 02-10-2008 at 09:44 AM. Reason: add whitespace
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  #46  
Old 02-09-2008, 07:34 PM
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Keyna:

It's OK ~ we all understand! You're
not babbling or rambling. It takes a
toll on all of us ... even to the care-
takers and loved ones too!

There is a GREAT REASON WHY so
many individuals HATES EPILEPSY
with a passion!

There is a REASON WHY the logo
went from a candle to a FLAMING
TORCH! They want to BURN IT UP!
They've seen the destructive path
it leads upon individuals who have
it and upon individuals whose lives
are affected and effected by those
who have it ... IT IS ENOUGH!

More than anything else if it were
possible they (Neuroscience) would
be so excessively greedy to hoard
everything in sight - all the grants,
all the funds, all the donations, etc,
just to pursue into the brain - as it's
true ... they've come a long ways ...
but still have a long ways to go!


KEYNA - GO AHEAD AND
SAY IT:


I
HATE
EPILEPSY!

Last edited by brain; 02-10-2008 at 11:49 AM. Reason: spelled name correctly
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  #47  
Old 02-09-2008, 07:43 PM
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I Hate Epilepsy!!!!!
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  #48  
Old 02-10-2008, 09:45 AM
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brain - her name is keyna.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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  #49  
Old 02-10-2008, 11:51 AM
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Originally Posted by Bernard View Post:
brain - her name is keyna.
Sowwie! I fixed it!

Keyna! My apologies for misspelling
your name, I had a friend by the name
of Kenya in School, I guess I'll need
to adjust my typing here!



Forgive me!
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  #50  
Old 02-12-2008, 10:53 AM
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Your not alone


Your not alone Keyna, Im kinda going through the samething right now.

Ive been afraid to even talk on the forums because ive been so upset and depressed and sick and pissed ect....

i have a neurologist appointment tomorrow at 3:45 im done with this med im on no more! ive tried it for as long as i could i cant take it anymore.....

stay strong
love angel

Originally Posted by keyna View Post:
I am also strong willed and stubborn, but right now I AM TIRED.

I WAS BORN SICK, NOT WITH EPILEPSY, BUT WITH OTHER VARIOUS PROBLEMS, I WAS BORN FIGHTING. I AM 35 YRS OLD AND HAVE HAD TO FIGHT FOR MY HEALTH, MY LIFE, MY MENTAL HEALTH, OR SOMETHING IN MY LIFE ONE WAY OR ANOTHER EVERY DAY.

Just when things started to get easier, my life finally started getting good, I was finally HAPPY, and could accept the things I had gone through in my life, BAM like a shot in the head.

I have been fighting and fighting and fighting, now my own son is afraid to be alone with me, I can't drive, after fighting for two years to stay at work the Dr. finally said Erin you just can't work anymore, I have to take you out " you should be proud, you've worked so hard, you didn't just give up, I've never seen anyone fight as hard as you" (I didn't feel proud, I felt like a failure), I to have had to get food stamps, medicaid. Then in November my Dr tells me I need to apply for SSDI, SSI, and something else because I may never be able to go back to work agian. ME? I went to collage, I worked 2 part time jobs and took extra classes, just to go to collage, now I may never work agian?

I tried to commit suicide twice when I was younger, but now I would never do that, no matter how depressed I am, as unhappy as I am right now I'm not that selfish, I have become a burden on those I love, but it would crush them, and with the exeption of my son and my father epilepsy has brought me closer to my loved ones. I would of course like to be close to my son agian, sometimes it's there, but there are so many times that he doesn't want to be in our home.(alone with me, he's scared)

I just want people to know that it is OK to feel depressed, epilepsey can be overwhelming, for me I have a history I have depression, panic disorder, anxiety disorder, obssesive compulsive disorder w/ agoraphobia, that's what I meant when I said I had just started enjoying life, I was finally happy, even with all my mental and health disorders I had found 2 Dr.'s to help me, and me and Austin where having a good time of it. so when this haappened at first it was no big deal, but the longer it's gone on, and the more I've "lost" I've gotten tired, depressed, and a bit jaded, and most of that has happened within the last 6 months, so I NEVER mean to offend anyone, or say the wrong thing....I don't know I'm just babbling and I'm crying so it's hard to see, I'm just going to stop now.
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  #51  
Old 02-12-2008, 03:58 PM
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Oh Keyna, Im going through the same kind of thing to. And you know what? I hate epilepsy to!!!!!!!!!! It sucks!!! my son sais it sucks!!!!!!!! If he were not here I would not be either. I have been on all those meds listed or are on some of them now. I can barely breathe. I will pray for you and your family. I have had epilepsy for 33 years. When I read what you wrote, you almost wrote my life. I have been fighting and fighting and fighting, Now its my son,I have to fight for him. I hate epilepsy and kidney disfunction! I hate it.
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  #52  
Old 02-12-2008, 04:03 PM
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And Keyna, I am so sorry if I offended you earlier. I have been going through this for months. I did at one time try to commit suicide. I wish we could sit together and talk and share stories.There is just so much to know. And I think we could be a good support for each other.Teresa
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  #53  
Old 03-29-2008, 09:50 AM
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Some brutal honesty here for me. Yes, I do get these strange 'suicidal' or what I would call 'giving up' thoughts quite often. This happens even more when I am overwhelmed by work or life's daily challenges. I believe that I can recognize these thoughts and dismiss them quickly most of the time, other times I know it is my signal to back off and revert to my own little world for awhile to reboot.

However, even though these feelings are different, I probably felt more suicidal as a teen before I had epilepsy. Based on my past experience as an EMT, I would say that the rate they mention in the study is far below that of the average teenager.

PARENTS, please watch your Teens even if they don't have E.

Last, I was quite surprised that Dilantion/Phenytoin was NOT on the list.
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  #54  
Old 03-29-2008, 10:11 AM
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I think this might answer that question...

Quote :
Although the 11 drugs listed above were the ones included in the analysis, FDA expects that the increased risk of suicidality is shared by all antiepileptic drugs and anticipates that the class labeling changes will be applied broadly.
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  #55  
Old 03-29-2008, 10:12 AM
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I take a long walk or a brisk run when I get overwhelmed by this disorder. I go to my special place with my favorite music. I hang out with my dog who doesn't really give a $^%% about the epilepsy. She just wants my companionship, food and love.

Also, I love the fact that other people here are handling it with humor. I definitely need a great joke every now and then just to deal with the crap.

We share frustration whether it is a loss of transportation or side effects of medication if we choose to take them, and a potential stigma. The stigma is something we cannot control. Our reaction to it, whether it's a smart remark, joke or dismissal of the stigma, is the trick to coping with this disorder.
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  #56  
Old 05-04-2008, 05:46 PM
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Cool Thanks for the info.


I take two of those drugs listed. Those drugs can increase thoughts of suicide.
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  #57  
Old 05-05-2008, 09:27 PM
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Originally Posted by xenome View Post:
I feel suicidal alot, but I think its caused by the fact that I have seizures to begin with, not the drugs Im taking. Having epilepsy is a horrible thing to have, especially when its uncontrolled like mine are so why would people blame the pills and not the disease?
I know exactly how you feel, my feelings about my Epilepsy are about the same. For me, it ruined my career, my life, and my family. The latest drug I'm taking is Lamictal, but it doesn't make me feel suicidal. I don't have very good control of mine either, and sometimes think it would be a lot easier on other people around me if I wasn't around. I want to get out on my own and make things easier on everyone, but my Epilepsy holds me back. Money is a big object for me, I'm on Disability, but it doesn't pay enough for me to live on my own the ways I would like to be able to. Not being able to drive has a lot to do with not being able to get on with life. I want to move to a warmer climate than I live right now, but Disability only allows me to work and make so much to remain on Disability. Disability is taking care of most of my medical expenses right now, but I would much rather be working. Finding a job right now that has insurance is hard, and most places, if I can work full time, usually doesn't provide insurance until after a years employment.
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  #58  
Old 05-05-2008, 10:27 PM
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I have gone thru times of that. But I have some meds that work well now. Finally.But it always includes diet. My doc, the school for my son, my mother, I remember my mother bringing up diet when I was a kid in the neurologist office. He yelled at both of us. Disgusted at the thought of diet having anything to do with the nervous system. Then I was toxic on Depakote. Every time I was dizzy on Depakote they did not take my blood levels, they just gave me more. My mom didn't know.But you guys. Its about taking care of yourself and your body. Don't rule out meds. We just don't need to be druggies.lolMy treatments include brain surgeries. meds, excercise.good diet, reading,and more like taking care of my epileptic child and being on top of everything.
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  #59  
Old 05-12-2008, 10:45 PM
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I am fine. I go thru depression times. But I look at things pretty logically. I have a son who has epilepsy, 1 kidney , cerebella ectopia, and is slightly mr. with a temper. I am on anti depressants because I know I need them now. This was after the coma. I have been on Keppra for years and now Zonisamide. I think it could be many things. Some people meds, some people both epilepsy and the meds and circustances. I am much better than I was. I also think it is very very important to have a good support system. To help you get thru these times. This is why we need each other.
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  #60  
Old 05-14-2008, 05:37 PM
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I know what you all are going through. I feel that way a lot. Some days I feel like doing nothing. I hope you feel better soon.
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