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sesat13

epilepsy has ruined my life.

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.

2nd-2-None

Hey sesat13,

It sounds like your having a tough time and beating yourself up a little bit. Don't feel alone, I do the same thing from time to time. A very smart man once told me that life places the heaviest burdens on only those who can carry the weight. Epilepsy does limit certain things in life, but it also grants you the opportunity to REALLY take a look at the beautiful things in life that most people take for granted. Keep your head up!

Re: epilepsy has ruined my life.

Hey sesat13

I get what you are saying! We all do. Everyone on this website is effected with seizures and get what you are saying!!

You are not alone. Stay strong.

 

 

Re: epilepsy has ruined my life.

Welcome to the club , take it from a Frenchman with over 46 years history in epilepsy .                                             You are paying too much attention on the negative , driving is not a benefit it is a waste of money in gas insurance maintenance in short your worste investement .

Can you die from Epilepsy , sure , when you compare with the normal population your odds are pretty similar . By the way I went to the funeral of 6 of my own MD . Sound like they all should have been epileptic.

Follow your MD advice take your meds and I will talk to you again in 46 years 

Re: epilepsy has ruined my life.

Sorry to hear what you are dealing with Sesat.

If misery loves company though i deal with the same anger towards E every day.  Personally i get a little tired of the "kum by yah" do as you're told and everything will be fine message.  Please hit me up on the side if you'd like someone to vent back and forth with!

Re: epilepsy has ruined my life.

thank you.
yeah, especially to hear that from people who don't live with the condition.
they just don't understand. you know when someone says they have cancer, people tilt their heads and go "aww".
where's our aww's though?
i'd gladly trade epilepsy for cancer.

Re: epilepsy has ruined my life.

Oh my, please ont say that. Cancer is such a terrible disease. I don't have epilepsy, but my son does. I am grateful everyday I get to spend with my son., he is my inspiration and I love him. Cancer takes your life away. I have seen families devastated by the loss of precious little children due to cancer. I know personally one friend loss their 4 year old to leukemia. Parents later divorced because thy could not cope with their loss. A neighbor loss her precious 3 year old daughter from a cancerous brain tumor, I just met a family with a two year old that has a face tumor that has pretty much ate his face off. I could go on and on.

Please, I am not saying that epilepsy doesn't suck or that people should not complain, everyone is entitled to their feelings. With that being said when my son was first diagnosed I was angry and very upset, his first neuro appointment was in a pediatric neuro office. There I waited with other families and their children. Children wheelchair bound, children that will never be able to walk, play, talk or make a friend, leave alone complain. That night, I went on my knees and thank the good Lord for my problems.

No doubt, epilepsy is a scary thing to have, but there are worse things out there. I am sure the families of those children would trade anytime. Count you blessings. Best wishes. Be strong.

Re: epilepsy has ruined my life.

Sesat

My father would have loved having epilepsy rather then having cancer.

You see he had surgery for cancer and had check up every month for a year then thos check ups were every 3 months. Yhen they were every 6 months. well those went find and he had yearly check ups for a couple of years he then had 5 year check ups, He was a great man and did a lot for the people around him. I watched him take a grear out of a transmission a old farmer has in his tractor. a lot of teech had been broken off and the transmission was not available. Watching my Dad hook up he arc welder and lay beads down then grind them off and lay more beads down was something to watch. When he was finished the farmer had basically new rears for his transmission. But he had another check up and in that check up they saw something they thought was cancer in the lung. Surgery was set up and they opened him up then closed him. The cancer was not in his lung but wrapped around his heart. He was given 3 months to live. He died 2 days after getting home due to a blood clot hitting his heart making it explode.

He would much rather have had epilepsy because we could have been out fishing or watching the waves rol up on the beach. Or working on the old 56 chevy. You see I am well aware of issues due to having epilepsy since I have been living and dealing with epilepsy for 50+ years. Dad was one of the people in my life that made me look at other things and see the beauty in them..

Seizures are not fun and never have been but helping others with issues can be good. People may see beauty in that.

I do this for me knowing what I went thru. I do this because it was how my Dad worked things in his life. There is beauty in almost everything you just have to be looking for it or you will see nothing other then what will eat you up.

As for the awwwws. Check out the history Breast cancer has been national for about 25 years. National epilepsy awareness has only been national about 4 years.

Have you gone to the trouble of checking with your local paper or city counsel and let them know this month is epilepsy awareness month? If you haven't why not since you want it to be covered by people like cancer is. Have you even checked to find out where your local chapter of EFA is?

Stop feeling sorry for yourself and start living and dealing with epilepsy. Promote it yourself by talking to people and telling them what epilepsy is. Let them know that there have been many people with epilepsy go fr in their lives. Research ans study find out the types of seizures educate the masses, Go to schools and give speaches. When I was diagnosed I didn't know chit about what epilepsy was but I did want to know what was causing my seizures. I wrote an essay in 8th grade which was given to the entire student body. The same essay was being used by the school 5 years later. It informed people about the types of seizures what causes the seizures and what needs to be done if they see someone in a seizure. Have you done any of thoose things regarding why you have seizures what type of seizures you have and what should be done if people see you in one?

If not try starting there.

Re: epilepsy has ruined my life.

Hi Just_Joe,

Epilepsy is socially worse than cancer, as epilepsy is still stigmatized AND regarded as illegitimate (with (Cell 4*) social consequences), while cancer is sometimes stigmatized (such as with prejudice to regarded causal & chosen "unhealthy lifestyle") BUT regarded as unconditionally legitimate (Cell 6*):
*Preview of "Profession of Medicine: A Study of the Sociology of Applied Knowledge" by Eliot Freidson (1988), page 239, Table 2:
http://books.google.com/books?id=G7vhOk_bYlsC&pg=PA235&dq=Friedson++%22a...

The work of literature I cited previously that posed by character "epilepsy" as a "good choice" for a plethora of excuses and hoped for benefits, was a work of literature often regarded with many instances of satire ("The Mangy Parrot", unabridged has more):
http://books.google.com/books?id=l4biFTzD3p0C&printsec=frontcover&dq=man...

While some studies conclude that the social stigma of chronic migraines is worse than that of epilepsy*, I have never been told to leave a school, university, hospital, nursing facility, etc., because I revealed my migraines, but when I reveal my epilepsy, I've been ordered to leave under threat of arrest otherwise (many people with epilepsy dogs encounter this, too!!!).
* http://www.sciencedaily.com/releases/2013/01/130117084641.htm

Then, some epileptic seizures could easily meet the criteria of being "fun". Some individuals can purposely trigger ecstatic seizures, and they will refuse most any attempts at prevention, despite typically unpleasant after effects. I can't trigger mine, but many are divine, being better than opium and/or orgasm, and while Keppra prevents secondarily generalized tonic-clonics during unpleasant clusters of periodic seizures, my daily seizures are unresponsive to such control, and it is as if happiness cannot be tolerated in this society without certified prerequisite pain of a socially acceptable type.

The phrase "Father, why have you forsaken Me", does not indicate an entity necessarily "feeling sorry for themselves".

Tadzio

P.S.: What is the person with the worst to say???:
http://www.nytimes.com/2010/07/28/arts/design/28callahan.html?_r=0
after being told again "People like you are a real inspiration to me!"
http://www.nytimes.com/imagepages/2010/07/28/arts/28callhanimgC.html

Re: epilepsy has ruined my life.

I understand where the stigma is and I have lived with this for 50+ years. I have family members who do not ask about my epilepsy because they were not around me when I had the seizures. I know what was done and by whom.

The stigma is there YES but how do you fight the stigma other then talking about it. Is it wrong to try and get people to discuss and think? I know the stigma. I also know that many things are or have been in the national head light for far more years then Epilepsy has.

I know that there were people with epilepsy being put in homes away from the public in the 1960's. I also know that in the 70"s some states were keeping people with epilepsy from getting marriage licenses.

I saw my PCP during the first wek of this month andI asked him if he knew what this month was. His answer was november and thanksgiving. Which is when I told him what this month was for people with epilepsy. I will be seeing him next week to see if his nurses and the office have replaced the pink ribbons to purple.

Am I wrong in trying to get people out and in the public to tell the people around them about epilepsy?

How do you get rid of the stigma?

How do you change the way people are dealing with epilepsy other then teaching them we can do anything they can as well if not better then others do?

Re: epilepsy has ruined my life.

Consider the fact there are always cases worse than your own.  Whenever I become depressed about having tried all of the meds and combos of meds available, surgery on LFL once and LTL twice, and the fact I was told "The readings of your seizures are higher than anyone at this institution or any of the 5 institutions it was forwarded to have ever seen.  Your next seizure could be your last."

Even through all of that, when in the hospital tested for surgery I seen patients who were in a lot worse condition than myself.  Their seizures were far from as extreme as mine, but their epilepsy was only the tip of the ice burg and they would never be able to live at home.  I could say "EPILEPSY HAS RUINED MY LIFE" and not be lying as I was an honors student up until high school.  At that time the seizures really took a turn for the worse and I underwent the first of many surgeries.  When someone sees me now they'd never believe I was one of the top in every one of my classes, as the seizures and surgeries have had a severe impact on my memory and speech.  Now I use all of my experience to council other patients considering surgery or VNS, help the Epilepsy Association by a countless number of newspaper interviews, newsletter interviews, and on TV once.  Next time you go to see your neurologist, look throughout the waiting room and when you see a patient whose condition is worse than your own use that to overlook your own condition and move forward.

Re: epilepsy has ruined my life.

That is a very positive and healthy way to look at the situation Vande.  Good for you if you are able to maintain that 24x7.  For me personally though, some of my most therapeutic moments are from taking the glass half emply approach & letting the angry inner beast run free.  Certainly we are all different and have different mechanisms to cope.  Sesat, we all certainly want to help you find what works best for you!

Re: epilepsy has ruined my life.

It's not that people don't think nothing, they don't know what to think. I knew a person who became a dear friend when she got cancer because her friends and family at the time could not process it. No biggie for me, I was still dealing with my parents' guilt trip from my diagnosis.

Mine came indefinitely at 18 and I did have a driver's license, so I took scuba lessons, and when the definitive arrived before 19 well I dove the reefs of the Bahamas. How's that for rebellion and denial for you?

I too was that honors student, beginning college to study marine biology, and I could no longer read at the volume required w/o having seizures. I was told instant death waited with every fall, etc. etc. etc.

You know what? doctors have to warn you. It takes time to find the right medicine for you. Five years of hell for me. And sometimes you have to wait for the one that truly works. Only three years ago I actually found out what real sleep is and can read more.

Life doesn't end. You just have to rework it in a different frame. I gave up scuba for backpacking. My "seizure dogs" have been untrained adopted mutts who in their own way let me know I'm not quite right. I never got to finish college, but I never stop trying to educate myself. I keep my limits, but I don't let them dictate to me my goals.

If your friends and family don't understand, there will come new friends who do that look out for you when you can't look out for yourself. I've heard medicine changes you, although I didn't think so, but everyone around me is too many to argue with.

I'm 57 now. I have lived my life, done and seen things some people never do because I didn't roll over and die, I found another way. I'm not rich, I work because I'm blessed in my level of limitations although the older I get the harder it all is..some days thinking is hard and motor functions damn near impossible because my brain has hit its limits.

Re: epilepsy has ruined my life.

Sesat

Epilepsy did not ruin your life. It may have made you take another road to your goal. You seem to think your life is all over and you can not do anything. Do yourself a favor dream and make goals. I have been doing that for 50+ year after being diagnosed. Now I have reached many goals. I may have had to take turns others didn't have to or there may have been a few bumps in the road but dreams and goals can and are met daily by people who have other issues that are far worse then having epilepsy

We all know what it is like to want things to be perfect but life is never perfect. I know what it is like not to drive. I also know that there are many people with epilepsy who can and are driving. As for planing not to do this or that we are never garunteed anything.

If you think you have it hard today you need to look at some history. If you think it is bad now check with your neuro and other doctors. Back in the 1960's people with epilepsy were still being put away in homes. In the 1970's some states were not letting people with epilepsy get marriage licenses.

Go to a corner and watch people crossing the street going in any direction. You see many people with handicaps. Some with canes or walkers, others wearing glasses, Some with hearing aids. Don't forget those with seeing eye dogs. Now think about all the other people crossing. Can you see the diabetics? Did you notice the people who have heart disease? What about the other people who are crossing who have the same thing you are comlaining about did you see the people with epilepsy crossing? Understand that all of those I listed did not plan to have their issues either. As for breast cancer and their funding you might want to check out how long they have been around. If you had you would have seen that they have been out and nationally for about 25 years. Our National drive has only been around for 4 years. So we do have a lot to do and we are getting there.

Have you talked to the leadership in your town? Have you sent letters ti newspapers in your town letting them know that this month was epilepsy awareness month. If you haven't then why haven't you? It was not planed that I have epilepsy but a blow to the head is what caused mine. Ever get hit in the head?

You did not post the type of seizures you have nor did you post the medications you take. You also did not post how long you have been having seizures.

I know what it is like not to have a drivers license. I also use some common sense. What would happen if you were driving and hada seizure? What would happen if you did not take your medication.

You may think I am being hard but it was not the point I was trying to make. We all know what it is like to deal with epilepsy. I have been living and dealing with it probably twice as long as you have been alive. 

I hope this helps

Joe

Re: epilepsy has ruined my life.

I had thought the same thing.  I experienced 4 seizures in one night due to a reaction to medications I was given.  I was told that I would never go back to my nursing position by my neurologist.  I was devastated!  I loved my job.  I worked hard to get my brain function back to near baseline and had neuropsych testing done in order to prove to my doctor and my employer that I could do my nursing duties.  I was not able to get my nursing job back as my employer found every reason in the book not to rehire me as a nurse.  Although I cannot prove it, I know they saw me as a liability & now I can't blame them for feeling that way.  I was bitter for the longest time, but realized that it didn't do me any good because the bitterness spilled over into other aspects of my life.  I am happy to say that I have been back to nursing for quite some time and loving every minute of it.  My neurologist calls me her miracle patient. She wanted to help me file for disability, but I told her that I wanted to go back to work and that's what I did.  Sure, I had bills piling up due to not having a job, but I was brought up not to be a quitter.  Months after my seizure episode, I found out that the neurologist didn't think that I was either going to live thru that night or that I would never regain my brain function like I have.

Everyone's situation is different and I see your point. I really feel that there is a light at the end of the tunnel.  It may not seem like it now, but give it some time.  One thing that helped me was getting in touch with my area epilepsy foundation.  They are a great help.  I actually volunteer when I have time.  Get involeved.  I know one of the major projects the foundations are working on is getting the definitions of seizures and epilepsy changed.  There's a stigma that comes with having this condition sad to say.  At least treatments have come a long way as one previous poster mentioned.  Can you imagine being institutionalized!!!

I think we've all been in the same boat.  You just need to choose whether or not you're going to paddle inland or remain where you are.  I wish you luck.

Re: epilepsy has ruined my life.

Hi Sesat13,

Welcome to the dystopia delivered upon people with epilepsy, a dystopia generally prodding members into denial of the stigma.

The results of the stigma to epilepsy also gets attention, at the very least, in absurd denial. Discrimination based on this stigma covers every social situation, from the sociology of garbage dumpsters to the sociology involving the federal supreme court. I have my own such experiences with society and epilepsy, and much more generalized accounts can be found in book searches for such as "Goffman epilepsy", for instance:
http://books.google.com/books?id=QKkHW8lsgrYC&pg=PA50&dq=goffman+epileps...
"Epilepsy" by Graham Scambler (1989), chapter 3 "Lay concepts of epilepsy and stigma", page 50:
"he is denied the ordinary privileges of social life."

The Stigma of Epilepsy has mainly ruined my life in in the legal engagement of gainful activities (both the State & Federal governments have told me so, and all these rulings have been upheld on all ultimate appeals).

Epilepsy doesn't prevent the winning of the State Lottery (seeing predestination through epilepsy may help), but any disability payments will prevent the receiving of the winnings without high priced legal interference.

Trains on railroad tracks will also run epileptics down, and being on close guard for every narrow moment of time is sometimes nearly not narrow enough (I record everything for the effects & affects of Epilepsy).

Tadzio

Re: epilepsy has ruined my life.

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.

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.

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.

Re: epilepsy has ruined my life.

Molson, i see that you took an early retirement and the seizures started at 40.  Mind my asking how old you were when you did that & what age you are now?  There certainly is no need to view yourself as a coward for having natural thoughts that have occured to many of us.  I'd be careful with the medications you are on.  I tried many different ones that had very little impact on slowing down my seizures but had a very strong impact on my wishing to die.  I stopped taking them and am in a much better place now.  Please feel free to email me and i'd be happy to discuss in greater detail with you.

Re: epilepsy has ruined my life.

I am so sorry. My 5 year old was recently diagnosed, and I agree. People seem to think its not a big deal. "Oh, there are meds for that right", and then its like its not that bad. They don't realize how awful it is to give a five year old meds that could have her think of suicide, along with all the other horrible side effects. They don't understand I'm already thinking about her driving, dating ,working, living on her own alone....will this affect her. Everyone is so nonchalant. Even the school nurse tried to make me feel like I was overreacting about my concerns. I wanted to scream at her "you have your child in the hospital a week and then have to leave her every day". It's a horrible feeling. I know you are in a different sage of your life but I completely understand and sympathize with your situation. Good luck.