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epilepsy has ruined my life.

Wed, 11/20/2013 - 17:14
epilepsy has ruined my life. and it pisses me off how people think nothing of the diagnosis. it doesn't get the attention it needs for sure. when i was a kid, i didn't plan to NOT get a drivers license. i didn't plan on spending money on medicine for the rest of my life. i didn't plan that in the future it would be life-threatning to cross the road, cuz what if i have a seizure there? i hate this shit, and pardon my french, but this shit is too much, and it needs to get way more attention.

Comments

Re: epilepsy has ruined my life.

Submitted by MOLSON on Sun, 2013-11-24 - 16:27
How I understand this. My seizures began at 40, absence seizures they never happened before. For a couple of years they were undiagnosed. They said it was mental:disasociate disorder.During that time I had car accidents, almost oost my job. I had to tip toe around my losing time, losing memory(I could not rember names, simple words,situations) When I had a full grand mal at work, they knew what ite was. They tried a lot of medications. I visited a clinic that was doing surgery and asked the doctor if he thought the surgery would help and he screamed at me "You're and Epileptic get used to it". I left the room and then went to NYU Hosptial in NYC. They did a number of tests and I had right temperol lope surgery. I was seizure free for 4 years and then they began again, worse than before about every four months each worse then the last. I fell once and had to go on dialysis for 10 weeks. When I got out they tried new medications and it all started again. They changed the meication Limital and I had another seizure they added Keppra and I became lost all sexual functioning. They took me off Keppra and put me on Vimpac a couple of weeks ago and when I take it some times i Wheel around and have to lay down till it passes. The doctor says it will pass. the Sexual functions disappeared for about a week and then started again. M y girl friend was it ok, saying "thats all men think about, And it's ok." Yea right the doctor said go get some medications so you and have some functioning. I said that I don't want to use medications to solve problems from seizure medications I am taking. He said nothing and wants me to stay on yempac and limetal and wait to see if I seize again. He oferred psychiatic mediations which I refused. out I think there is only one one way to sovle all these problems. Problems with: Memory Sex Work: I took an early retirement) thinking(i can't read, or think logically, (I dont want to talk about my feeling as if they are an emotional problem that can be solved with mediation, or join a support group (what a Joke.) That I think about suicide is a serious matter but i have been too much a coward and wonder if others will think me a psychiatic cas (and they will). Seizure after sizure, each time lying to myself thinkint that this will be the last, then another, then this medication will work, and then another seizure etc etc etc. Then you get all these pelple who say "look on the sunny side of the street idiots, or it could be worse. I remember each time I wake up in the hospital. The last time they told me I had a stroke because they did not know about seizures. I had to explain to the staff, then they tied me to the bed and would not let me go to the bathroom Some times the doctor would want to give me new medications to add to the two I was taking. Jesus what a joke it all is, and the joke seems to be on me. I hope things go better for you.

Re: epilepsy has ruined my life.

Submitted by 2nd-2-None on Mon, 2013-11-25 - 13:48

2nd-2-None

Hey Molson,

I read your message and just wanted to throw some ideas your way. I too never knew epilepsy could make some one's life so difficult. Sexual problems...CHECK! In and out of hospitals...CHECK! Intractable seizures...CHECK! But I'll never give up. I'm a 36 yr old man who had a brain tumor taken out in 2007. Then the seizures came out of nowhere. I have a Master's degree in three subjects, yet I can't work. I don't want to sound like a Hallmark Epilepsy Greeting Card, but, giving up is not an option. And, people who say Epilepsy is my FRIEND are out of their minds(no pun intended). I look at Epilepsy as a mean, ugly opponent, who needs to get Knocked Out. Have you found the right doctors? It really does mean a world of diffference. Find one who actually cares. Especially about how you feel. If he or she cannot properly handle your other problems, a truly good doctor will point you in the right direction. If you feel suicidal? Get help. That's larger and more problematic than Epilepsy. There are so many things that people with Epilepsy forget they can enjoy such as movies, speaking with friends, both old and new, and keeping HOPE alive. You may hate the word HOPE, but you did write a long message on this site. And, if you hate Epilepsy Support Groups so much...what do you think you're on now? Keep your head up Molson!

2nd-2-None

Hey Molson,

I read your message and just wanted to throw some ideas your way. I too never knew epilepsy could make some one's life so difficult. Sexual problems...CHECK! In and out of hospitals...CHECK! Intractable seizures...CHECK! But I'll never give up. I'm a 36 yr old man who had a brain tumor taken out in 2007. Then the seizures came out of nowhere. I have a Master's degree in three subjects, yet I can't work. I don't want to sound like a Hallmark Epilepsy Greeting Card, but, giving up is not an option. And, people who say Epilepsy is my FRIEND are out of their minds(no pun intended). I look at Epilepsy as a mean, ugly opponent, who needs to get Knocked Out. Have you found the right doctors? It really does mean a world of diffference. Find one who actually cares. Especially about how you feel. If he or she cannot properly handle your other problems, a truly good doctor will point you in the right direction. If you feel suicidal? Get help. That's larger and more problematic than Epilepsy. There are so many things that people with Epilepsy forget they can enjoy such as movies, speaking with friends, both old and new, and keeping HOPE alive. You may hate the word HOPE, but you did write a long message on this site. And, if you hate Epilepsy Support Groups so much...what do you think you're on now? Keep your head up Molson!

Re: epilepsy has ruined my life.

Submitted by MOLSON on Sun, 2013-11-24 - 16:24
How I understand. My seizures began at 40; absence seizures; they never occured before. For a couple of years they were undiagnosed. They said it was mental: disasociate disorder.During this time I had car accidents, almost lost my job(I had to tip toe around losing time, Ylosing memories(I could not remember names, simple words or tasks) Then when I had a grand mal seizure at work, they knew it was epililosy. They tried a lot of medications. I visited a clinic and asked the doctor "if he thought the seizure would stop with surgery" and he screamed at me "You're an Epileptic, get used to it!". I left the room and did not return. Then I visited NYU Hosptial in NYC. They did a number of tests and I had right temperol lobe surgery. I was seizure free for 4 years; then they started all over again, each seizure worse than the one before, happening about once every four months. They put me on limital. It did not help. They increased it. It did nothing, they added Keppra then another seizure, and when this happened they found , me on the floor my kidneys shut down,I was on dialysis for 10 weeks. When I got out of the hospital they tried new medications and the seizures started again. They added Keppra to the limital and I lost all sexual functioning. it did not stop the seizures.They took me off Keppra and put me on Vimpac and limital a couple of weeks ago and when I take when i take it, sometimes, i Wheel around the room and have to lie down till it passes. The doctor says it will pass with time. Sexual functionng lasted for a week when they took me off the keppra, only to be a problem once again. My girlfriend said it's ok,"that's all men think about anyway" Yea right" The doctor said go on medications to have functioning. I said " I don't want to use one medication to solve problems caused by another". He said nothing but wants me to stay on yimpac and limetal and wait to see if I seize again. He offerred psychiatic mediations which I refused. Now I see there is only one way out the this never ending situation Problems with: Memory Sex Work: (I took an early retirement) thinking:(i can't read, or think logically) hope after hope, seizure after sizure, each time lying to myself saying "this will be the last, then another seizure; then this medication will work, and then another seizure etc etc etc. Then you get all these people who say "look on the sunny side of the street(idiots), or "it could be worse". I remember each time I woke up in the hospital. The last time they told me "You had a stroke" they did not know about seizures, and when I explained it to them, they tied me to the bed and would'nt let me go to the bathroom. Some times the doctor would want to add addition medications to the ones I was taking. Jesus what a joke it all is, and the joke seems to be on me. People say I dont want to share my feeling.as if this will solve the problem. Or they say I should tske mediation;that I'm depreseed, or I should join a support group(what a Joke!) That I think about suicide is a serious matter, yes. And if I were notsuch a a coward... and I wonder what others will say, if not "he was psychiatic case" then he needed medications, he had not friends, he had no suport etc etc. I hope things go better for you.

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