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HELP ME!! I CANT LIVE WITH EPILEPSY

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Posted 11/16/2008 8:59 AM (GMT 0)
Hi--
I don't have epilepsy but have lupus and sometime can't drive and my son has epilepsy and I just want you to know that I didn't even use my drivers license for many years, till I was about thirty or so. People who live in NYC, Boston, Philly, DC and other big cities can't afford the insurance parking and registration and taxes on a car, and travel by car is often slower. We always grabbed a cab or took a subway or bus.

Even living in Toledo Ohio I rode buses and walked alot and took cabs. It was always chic to us. I have friends who are in their forties that don't have licenses. Ann Arbor Mich is another place you can live and not have a car.

The places that are the most hip, like college towns and cities usually have good enough ammenties close bay and buses and cabs that driving and trying to park really is a drag. I always liked walking and window shopping and running into friends.

So it's not he end of the world. I plan to move back somewhere were I don't need to drive at some point.

I understand life in the south, cars are like a status symbol, where up north, they are dirty things servants drive, LOL, or not politically correct. I enjoy a cab ride and the pleasuer of being driven at my whim, when I can afford it.

So maybe there's more than one way to tackle the poblem--bikes in cities are great too, as well as small mopeds where legal.

Take care and I hope you get your license soon and stay seizure free. I know people dont understand but also, you are strong andyou will get through it, I believe in you. I'm rooting for you!
Posted 11/25/2008 3:28 AM (GMT 0)

Hi Caroleena,  I have a son with epilepsy.  His first seizure was when he was 19. He was put on dilantin and was mostly seizure free for 12 yrs.  He had a couple of them due to having colds and fevers which metabolize the med faster and then the blood level goes down.  Almost 4 yrs ago his seizures went out of control.  He was having grand mal and absence seizures almost every day.  I finally found a terrific neurologist for him.  He had to take a leave of absence from work for almost 3 months to get used to the meds.  This is what he takes - 2000mg of Keppra, 650 of Zonegran and 500 of Lamictal.  He got used to all the meds, has been seizure free for close to 4 yrs., all EEGs are clean and he is working at his job as a teaching assistant.  He also drives.  He had to be off driving for 1 yr. but after being seizure free and having good EEGs the neurologist permitted him to drive. It is up to the neurologist to determine the length of time not driving. He drives almost 300 miles in the summer to visit his grandparents.  He drives to go out with friends.  No one has ever teased him or said anything negative about the fact that he has epilepsy.  He leads a completely normal life.  Yes, he is very careful about getting sick but with all the meds he takes he is well protected.  He is now 35. Dr. thinks he always had epilepsy but the seizures weren't apparent until age 19.  What I am saying is that you too can lead a normal life.  No one should say a thing about it to you.  Would someone criticize you if you had diabetes?  No. The same is true with epilepsy, cancer, high blood pressure - these are all conditions people live with and they do lead normal lives.  I  want to give you hope to see that you can turn things around.  If someone says something negative to you turn it back around on them.  I wish you the best and sorry for being so wordy here but I want you to see others who succeed. Take care.

Gentle hugs,

Aurora

Posted 11/25/2008 9:45 AM (GMT 0)
Hi

I have had Epilepsy since I was 17 and haven't gotten it under control yet, I am now 24. I'm usually seizure free in intervals of about a year. I know around August - December that I can expect a seizure.

How I deal with my condition is to count my blessings and not to focus too much on the past and the future. There are so many people so much less fortunate than most people on this forum. I have a wonderful wife(she drives me crazy sometimes when we're not in the same room and she hears a thump sound).

I'm also mostly dependent on driving with other people. I go to work with my parents(we work at the same company). Sometimes I drive if I'm going somewhere close(no more than 2 or 3 kilometers) like to a friend but I always take the back roads.

I've started telling people straight out why I don't drink or party til late, I have Epilepsy, and they generally understand and accommodate you.

The best Advice I have is to try and make peace with the position God put you in, and deal with each problem that Epilepsy presents as if it had nothing to do with Epilepsy but just for some random reason. One thing everybody on this planet have in common is suffering. We have epilepsy, others has cancer, some parents lost they're babies/children, other people go hungry, even the seemingly "happy" people has problems in some way i.e. debt, substance abuse, domestic violence...

Something someone might be interested in...after all it's worth a shot.

I'm going to see a doctor here in South Africa soon, I indirectly know of someone the team operated on in 2006 and she has been seizure free without meds ever since the op. The doctors assess you, calculate the risks vs the chance of success and then decide to operate or not. Your existing doctor can also communicate with this team to determine whether it's worth the effort of coming here in the first place.

I have heard of a girl that went to a neurologist in America and the neurologist was puzzled to find out that she had come all the way from South Africa to see him when - according to him - "the best neurologist in the world is in South Africa."

I know it's a long haul, financially and emotionally to go overseas for a doctor but maybe this team is the answer to someone's(even if it is only 1 person) problem.

Here are their website you can read up on everything you need to know to make a decision to come to South Africa and see them: http://www.epilepsysurgery.co.za/

I will translate the email I received from the girl's mother and post it soon.

Best wishes to all!
T
Posted 11/25/2008 10:38 AM (GMT 0)
Here's the letter as promised, its a long read but well worth it.

I’m Jane Doe and Mrs. Smith is a beloved friend of mine. She and her husband walked a difficult road with us when our oldest daughter, Jen(21y/o) was operated for her epilepsy. Mrs Smith asked me If I was willing to tell you the story of our daughter, seeing as your son also has epilepsy. I trust you will receive this email in the spirit of the situation and therefore I am prepared to share it with you.

Jen was put on medication in January 2006 for light epileptic attacks. She had scarring on her left temporal lobe. Dr Butler (Neurologist) and Dr Melville (Neurosurgeon) was the men at the head of the situation. They work at Constantiaberg Medi-Clinic in Plumstead. Butler is a neurologist that specializes in epilepsy. He diagnoses the patients and together with Melville they decide whether or not the patient can be operated on. They’re extensivenknowledge really put our minds at ease. South Africans that went to America to see a brain specialist for possible operations were asked why they came to America while the world’s best brain specialist is in South Africa. These and other reasons helped us to decide whether or not to have Jen operated on.

Jen could carry on drinking her medication forever with the prospect that her attacks could increase in intensity. She would also have had to go off the medication if she would ever fall pregnant. As parents we had to make the decision to carry on with the operation or not. She was in her second year of B.com. Melville explained timeously and patiently to us exactly what was going to be done and what the possible dangers would be. Seeing that her scarring was on her left temporal lobe, it could have affected her memory and speech. As parents you obviously want your child to go on with his/her studies. It wasn’t an easy decision but with the grace of God we made a decision to carry on.

It was naturally a long and stretched out process of evaluation. Except for the brain scan and EEG, she was on an EEG for 10 days to be monitored. She was then taken off her medication so that they could determine exactly where the “short-circuit” is when she is having a seizure. Butler would naturally come by every day and the ward staff would immediately call him if there were problems.

Like I said, her attacks were very light. Between the other patients in the ward we saw everything, so much that Jen actually felt ashamed about her light seizures compared to the other patients. A boy that had brain damage during birth was also operated while we were there. He has been an invalid his whole life and together with that he had frequent epileptic attacks, even with medication. Just before Jen’s operation I telephonically talked to the boy. He lives in Namibia. He got so emotional when he told me that his seizures halved and that it is so amazing for him that his life quality could be bettered SO much! He is still on medication but half of what he used to take.

The same with a woman of 58. She also struggled her whole life with epilepsy and after the operation she could drive and carry on with her job. Where she previously considered retirement because of her seizures.

I would like to end this email by saying in thankfulness that our daughter has gone through the operation without side effects, she got her degree last year and we are so grateful to the Lord for everything. Because her seizures were light she could leave her medication and so far she is still doing very well.
Posted 11/25/2008 7:31 PM (GMT 0)
Teuneman,  If you are already in South Africa it makes sense to go see these dr. to see if they can help you.  Keep in mind that your epilepsy has to originate in the part of the brain that can be operated on without destroying any of your other necessary brain function.  Also, you say you don't have your epilepsy under control but keep in mind there are so many medications that will control you. I don't think you have found the right med.  My son has had epilepsy for years and the first med he was on kept him under control for 12 yrs.  He is now on 3 diferrent meds that control him very well and he has been seizure free for 4 yrs.  He drives and has a job he goes to every day.  You may not have the same meds available to you in South Africa that we have here but so you know if they may exist in your country, my son takes Keppra, Zonegran and Lamictal.  My son had a seizure during an EEG and they found where the seizures originated and surgery was not an option for him.  So these are all things to keep in mind.  Also, for someone who lives in America is could be a great financial undertaking to go to South Africa to see a dr.  There are many outstanding drs. in our country who are epilepsy specialists that keep people living normal lives.  Just wanted you to know from another perspective.  I wish you all the luck and best wishes and hope things turn out well for you.

Aurora

Posted 11/26/2008 6:50 AM (GMT 0)
Thanks.

I am well informed of all the factors of a decision like that. I was merely sharing knowledge I have because it could help someone somewhere, even if it is someone from America, Nigeria or Namibia(which is right next to South Africa...half a day's drive)

Sometimes money isn't always an issue - that's also a perspective. Personally I'd gladly spend the equivalent of half of my mortgage on the operation if I was eligible and that's why I am going to see them, and if I'm not eligible, at least I can say that I've tried that possibility.

Anyway, that was just some extra info I wanted to share. The point was that Caroleena shouldn't feel hopeless, alone and least of all ashamed.

Ta
Posted 12/20/2008 4:36 PM (GMT 0)
 

Hi, well I have petit mal seizures but I'm still in high school. I had my first seizures in my spanish class in tenth grade. so now most people in the high school Know I have seizures. I had brain surgery in february of 2008, my junior year I had to bacj to school in a wheelchair with no hair.  I do know what its like to have people talk about you. people think that you can'y hear them when they talk about you. And Teenagers are cruel when they talk about you. I felt so insecure because I had no hair. At least you leave in a place where bus transportation is nearby and accessible. I live in a small town where the nearest bus stop is about 5 or 6 miles down the road. My dad doesn't really support me I used to be a swimmer and a good one at that but that dreams done with.

 
Posted 1/2/2009 7:46 AM (GMT 0)
hi
sorry to hear about your problem, i understand about all your medications, which are a compulsory part of this treatment, but beside this i would suggest you some things which are important and can prevent epileptic attack, 1st- take proper sleep,min 6hrs, 2nd-dont eat things which causes gastric problems. 3rd-do not exert urself at any cost. 4th- stree and tension to be avoided also anger should be in control.
all above these things will certainlt help you to control the attack
take care
Posted 1/19/2009 7:12 PM (GMT 0)
Hi Caroleena, I hope you are doing well.  I'm 20 and i've had seizures for about 8 years now.  I as well have struggled with the fear of telling people about my condition because I didn't want to be seen as different.  But here is one of the most important things i've learned in my experiences with "normal" people; people fear what is different, and what they don't understand.  I have figured out that the responses I get from people are a lot better when I actually take a minute to explain things.  Instead of just saying "I have epilepsy, you know seizures, but don't worry I handle it fine." (The reaction tends to be that freaked out blank stare.) I generally try and say in some form that I have epilepsy, which is seizures and that my medication controls it very well, and I can function just as well as everyone else.  I also try and add in something sort of funny like "don't worry im not crazy! I just have to be a little more careful than some people." I have found that anyone worth talking to responds very well to all this and treats me just like the next person. However, in the case of ignorant people........you didn't want to waste your breath on them anyway! :-)

Ok, now to my main point.  I think everyone with epilepsy has had their fair share of bad times, and feeling pretty sorry for themselves.  Not that people don't have a right to, but when all we do is dwell on how we got dealt a bad hand, it eventually consumes us.  When I read your message, alot of what you said reminded me alot of myself about a year ago.  I fell into a pretty bad depression, partly because I was having a hard time in school, and partly because I couldn't do a lot of the things my friends were able to do.  I hated not being able to go certain places, it eventually made me feel sort of "challenged" in a way.  Luckily I had just made a friend who basically tells it like it is.  This was the best advice i've ever gotten.  She told me, "Look, i'm not like you and i'm sure I can't understand all that you're going through, but unless you want to feel like this forever, you need to get over it! and start living your life."  Before I got this slap to my ego I lived a lot like a hermit and only thought about how life isn't fair.  After letting the little message soak in for a bit I realized it was time for me to take control of my life.  I'm not going to sit here and say that my life changed in that moment and everything was perfect after that. It was a long process to get my self-esteem and confidence back, but it was so worth it! 

So here's my little message to you......Stop caring what other people think, all that does is make you not care about what YOU think.  Walk into work ignoring all the ignorant people with a big smile on your face, and show them that their cruelness has no effect on you. And most importantly.  "Stop feeling sorry for yourself, get over it!! and start living your life." 

Life can pass you by in a second if you let it. 

Posted 1/25/2009 7:13 AM (GMT 0)
Hi Caroleena,
My name is Tammy and I totally understand you. I was diagnosed with epilepsy when I was 2 years old. My epilepsy was caused due to the fact that I died for a few moments when I was born and luckily they resuscitated me, but a lack of oxygen caused the epilepsy. I was given a medication called Zarontin, which is no longer used. I was one of the lucky ones who actually have been seizure free for about 16 years. No meds for 15 years. I found that alot of my friends were supportive more than judgmental. The way I had to look at the condition is that it is not a bad part of my life, it was part of me but did not define who I am as a person. It made me a more self conscious person and definitely a more aware person. I really hope things will be ok with you and I wish you the best of luck. Take Care.
Posted 3/7/2009 6:48 PM (GMT 0)
I lived with Epilepsy for ten years. I went to one doctor who did sleep monoring and lots of mri,all sorts of diffrent scans. He kept putting me on more meds and I just kept haveing more. I went to a new doctor he did more tests and just kept rasin my meds. finally I went to a third and he said see this you have had a brain tumor  for ten years  that is whats causing your Epilepsy. They took it out and I have been seizure free for a year and will get my drivers licence back in the spring.

            If you are not happy with any test results or progress you are makeing Please go see another doctor I beg everyone!

have a good day and God bless!

Posted 3/17/2009 6:48 PM (GMT 0)
Hi,

I Have complex partial seizers.....i'm have surgery next week and i'm scared to death...but what to do?
Posted 3/30/2009 5:47 PM (GMT 0)
my dearest Caroleena, I am new to ths unfortunate diease unlike you. I havent suffered for years with it just months. I understand your frustrastions. I hate having to ask for rides and it sucks knowing the paramedics on a first name basis. I am 21 I graduated high school with honours, went to college of my choice graduated their and then i moved to the states for a job where i was hired before i even finished schooling. I studied drilling and blasting and also got my license for driving 18 wheeler trucks. i recently moved to alberta for a job and then i ws struck down by epilsey. is all gone. i ahve a truck i pay for 648 dollars a month that i cant drive!!!!!!!!!!!!!!!!! my family all lives in ontario thats hard too. my boyfriend helps me but hes an acholic and i cant really leave him because i cant go any wear my self and the town i live in doesnt have a bus or taxi. ( too small) it does hve a hospital but cant o much testing so i get transfered and helicopter rides alot.
soooooooooooooooo, i got a puppy. that was my solution. i cannot have kids right now so the docs tell me too dagerous i understand that. and i cant work. her name is lacey and she's 14 weeks old. i got her from the spca. she is very theraputic to me cucly and playfull and a lot of work. depression sets in alot with me, but cant lay in bed all day with a little puppy staring at you need attention and love. the hospital lets her come visit too when i have to stay long periods of time.
I paint too, as a stress outlet.
i think my meds are not helping with the metal state,.... have u read or askd ur doc about side effects of the meds u r on??

i dont know if this helps you Caroleena but at least you know there is somebody else out there almost same age as u exeriencing the same grief and complications.

chipper up pup
xo Dee
Posted 3/31/2009 2:21 AM (GMT 0)

Happy729 said...
Hi,

I Have complex partial seizers.....i'm have surgery next week and i'm scared to death...but what to do?

Relax I was so nervouse before my sugery the worst part was when they shaved my head. however  after they did it they put me to sleep next thing I knew I woke up and  was feeling better!  It has to be done so just relax and realize after its done you will be better!

God Bless

Posted 4/4/2009 4:47 PM (GMT 0)
Hi Caroleena, i have had epilepsy for 13 yrs now and it is still not under control. The medication as well as the sezures has given me a bad memory.  My husband is a driving insructor and people are always saying "wont your Peter teach you"?  When i tell them that i have epilepsy some hold their heads down in shame and some say i do not look the type. Some People are very shallow and are not worth bothering with.   

I used to have sezures in cars and i would never acept a lift of any body.To go on the bus was a nightmare for me as well.   

 Ive learnt how to control my breathing when i have a panic attack, this has helped to stop some sezures. 

Good luck with work and please stand up to them colleages of yours. 

Posted 7/6/2009 1:00 PM (GMT 0)
try this one its my refferal about neurosurgeon
Posted 8/8/2009 2:49 AM (GMT 0)
I knowo how you feel having epilepsy is a drag I have had it since I was 11.
Posted 11/23/2010 1:33 PM (GMT 0)
hi first of all I would like to tell u that I have the same problem
epilepsy
I had epilepsy since I was 2 years old and till now I do have it,,now I am 20 years old,,,I take medicines which are lamictal and prisoline,,,
I cant live with epilepsy,,wherever I go it happens with me and u know when it happens with u infront of the people who are around u they laugh at u,,,instead of understanding and helping,,,some people dont know what is epilepsy
,,,
and i am really sick of this!!!
it hurts so much ,sometimes when i am alone sitting in my room it happens with me the epilepsy i start to talk without feeling and dont remember what happened and sometimes infront of people

me 2 I need help
please Help me
Thanks
Posted 2/13/2011 9:29 PM (GMT 0)
hi

ive had epilepsy since i was 11 now i am 13 i no thats not a long time but its hard to deal with and quite stressful i dont feel quite as normal as the others at my school any sujestions to how to make me feel normal

any sujestions would be helpful xx

savi :)
Posted 4/27/2012 9:57 PM (GMT 0)
Hi. I also have had epilepsy since I was very young. I am eighteen now. I have to ride the bus to college and feel bad when my friends have to come pick me up when we hang out. I am still trying to get my seizures under control. Luckily I have petite partial seizures so I dont hurt myself. My doctor will change my meds and it will be great for about two weeks and then I go back to having 4-6 a day( like it is currently). I am on Lamictal, Zonogran, and Carbatrol. My doctor says we are running out of medicines to try. I am scared. He also said that the place where my seizures are coming from is in a delicate area. I also have an aneurysm behind my left eye(causing me to be blind in that eye) so it would make it even more delicate. My life sucks sometimes. The longest I have ever gone without a seizure is two months. I was so upset when I had the first one. I thought I was going to make it to six and would get my licence. I could totally controll the car even if I had one. Sorry this is kinda long. Well, I hope one of us gets to drive some day. I doubt it will be me. confused
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