ppl thinking they're better

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Belinda,

I'm sorry your seizures were coming from both sides. I'm hoping that I don't start having seizures in a different location. I've heard a number of stories where surgery was successful and they stayed seizure-free for years and then they started having seizures again in a different part of the brain. But, I've also heard the stories where people have continued to remain seizure-free many years later after surgery. As for me, I'm not actually seizure-free. I do have auras, but they seem to be decreasing. Also, it's not as bad as having complex partials. I know this will sound crazy, but after living with seizures all my life it feels kind of weird not having them. It's like OK when is it going to happen? My seizures were always a part of me and my life.
 
I've never had just a couple of tonic clonics I've busted my head oped because I've had thousands of seizures and busted my head open plenty of time.iF crowds are good at causing my seizures.I don't freak out but other ppl freak out why should I ? I don't jave constant fear pf my seizures why should I?
 
Belinda,

I can't imagine what it's like to have many tonic-clonics and not knowing when the next one is going to happen. I'm sorry that you and others have to experience that. I never had constant fear of my seizures, either. But, intense fear is my aura which is actually physically painful for me. When I have a complex partial, I'm in so much pain that I'll moan and groan which can be embarrassing. I've always lived a pretty normal life and usually didn't even think about my seizures. It has now been 9 months since I had a complex partial. I had one a couple of days before my surgery. I have never in my life gone anywhere near this long a period of time w/o having a CP. It's been a month since I've had an aura. I've never gone this long without having an aura. I didn't go through that surgery for nothing. So, these days I'm trying not to get stressed out like I used to and trying to get a good night's sleep which isn't always so simple.
 
For me it extreme panic they are awful I go around holding husbands belt or doing something painful to check I was still alive
 
music,

Hi and thanks I appreciate you not coming down on me like so many have.
My seizures change all the time and right now I'm having partial seizures and tonic clonic seizures mostly. I wont let it keep me inside I will still live my lile.
 
Belinda,

It's great that you don't let the seizures stop you from living. We have to accept limitations, but we can also overcome challenges. Having epilepsy can make us stronger and better people in a number of ways.
 
Seagull,

I can't imagine what it's like in your case case and having seizures. but than none of us can imagine being the other having the seizure; nor would we want to. Everyone one has my dearest thoughts because of there seizures.
 
Belinda5000 said:
Seagull,

I can't imagine what it's like in your case case and having seizures. but than none of us can imagine being the other having the seizure; nor would we want to. Everyone one has my dearest thoughts because of there seizures.
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Well crap happens and nobody coming near by head with scalpel.Those auras don't. Happen so much now but am having tic all weekend but been on tramadol apparently that makes it worse
 
seagull,
I used to say the same thing about brain surgery. I was like, "no way am I having brain surgery". My thought was that I lived with seizures all my life and I could just continue to do so. My neurologists had been trying to persuade me to have surgery for many years before I finally decided to do it. I decided to have surgery b/c one of the things I was afraid of surgery doing to my brain seizures ended up doing to my brain. I am referring to memory problems. I was told the memory problems would probably continue getting worse as long as I kept having seizures. An MRI showed that the part of my brain where my seizures start had shrunk about 50% from having seizures all those years. The PET Scan showed that part of the brain wasn't able to do it's job right anymore. I had severe atrophy. I had laser ablation surgery which is less invasive than a traditional lobectomy. I do not regret having surgery. It was definitely worth it. Another thing is I started to think about what effects a seizure would have on me when I'm older--70s, 80s. I'm 48 now. But, I probably wouldn't have had surgery if I only had auras.
 
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Music36 said:
Belinda,

It's great that you don't let the seizures stop you from living. We have to accept limitations, but we can also overcome challenges. Having epilepsy can make us stronger and better people in a number of ways.
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I overcame my challenges a long time ago; I had to be able to get on with my life and I do.I take the public transit bus/train and I won't sit at home and wait for my next seizure to happen , and if it happens it happen that is life it has been 52 years of having seizures.I excepted my sz's long ago and have helped others dealing with theres and teaching them about E.
 
Belinda,

I also like to help others and educate others. It's very important that we educate others about epilepsy. There are so many misconceptions. I do it whenever the opportunity arises.
 
Belinda5000 said:
Knothing,
I'm glad your controlled I'm not controllable and I've had surgery and I'm med resistant and I'm allergic and there are still though who try tell me I haven't tried enough. After like 23 drugs in 50 odd years and I had the VNS it worked for a few years.I have lousy insurance.

My husband surgery worked in 1972.
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ive taken 11, i take 5 seizure meds now. Tegtrol, keppra, vimpat, toppmax & klonapin....+ seraquel, lunesta, lexapro. so 8 as of now.


Keppra rage kills me. ive broken kitchen plates, glasses, punched holes in my drywall, wooden doors for bedrooms, prolly will get divorced. walked about 14 miles/4.5 hrs home from work after getting sent home in Chicago winters twice.

and i got a VNS about a year ago. i have tonic-clonic, partial complex or 2ndary partial complex.

but you take the cake here.

i remember the last seizure i had was on Christmas. With family, close friends and prolly 60 people there, they look at me now as if im going to die or as if i am a serial killer.......the look on their face sometime is just shocking and im just walking by.

I remember being on a respirator after having a big tonic-clonic and my best friends came to see me in the ICU. After all the verset i was i getting my heat would stop and i need it to breathe, i took it off when they came and poof. Every machine went nuts, but i thought they were looking at me as if it was a funeral.

I can relate, but dont know exaclty what it is cuz you have another 20/25yrs on me.
 
Belinda, I am sorry you have such a hard time with your E. I feel for all of the people here who post stories such as yours.

One of the reasons that I don't respond much is because I don't feel quite like I fit in here. I do have to take medicine daily, but it controls my seizures, and I'm able to have a pretty normal life.

I still have issues of the med side effects. And there are a lot of dark thoughts about what if I don't stay ok, and why do I see things in my room if I don't sleep with a night light, am I having other problems? And I worry about what effects all these years of medication is doing to me. Those are things I share with many of you.

But I never for a minute think I have it as hard as those of you who can't drive and life a normal-seeming life. I don't think I'm better than anybody else. We all have a road to travel, mine is just a little easier, not better.

Belinda, I hope one day your life might get easier too.
 
Elsie said:
Belinda, I am sorry you have such a hard time with your E. I feel for all of the people here who post stories such as yours.

One of the reasons that I don't respond much is because I don't feel quite like I fit in here. I do have to take medicine daily, but it controls my seizures, and I'm able to have a pretty normal life.

I still have issues of the med side effects. And there are a lot of dark thoughts about what if I don't stay ok, and why do I see things in my room if I don't sleep with a night light, am I having other problems? And I worry about what effects all these years of medication is doing to me. Those are things I share with many of you.

But I never for a minute think I have it as hard as those of you who can't drive and life a normal-seeming life. I don't think I'm better than anybody else. We all have a road to travel, mine is just a little easier, not better.

Belinda, I hope one day your life might get easier too.
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You do fit in you normal person most of us similar most have it controlled and we all have path to walk some need a crutch though.It part of human condition it just happens e is a thread that brings ordinary people together..belinda I think worded it in such way got confused.It things like not driving working with dangerous things that sort of thing.Some things you have to accept I for one don't give hoot about driving but I understand it could pi88 someone off if no drive when ones job rely on it.It pisses me off I useless at maths and not scientist but I know a few and they nob heads so patchwork of life I have degree of normality even though we need scientists.
So you very welcome and please post
 
Elsie,

You should not feel like you don't fit in here. You have experienced seizures and you experience related issues. Sometimes, I have felt like the med side effects can be more debilitating than the seizures. There are plenty of people on these websites whose seizures are under control, but have to deal with related issues and/or want to help others.
 
Sometimes I actually feel that the side effects of the medications are more annoying than the breakthrough seizures that I have (despite taking them).
 
Most of us or people live with will be reminded each time take meds and that were it ends it good to know how meds can effect you or is my brain old with holes in and I find out from others it either the e or just getting old.There lots on here who do not have it they may just been curious come on site and like it. have e but offsprings do and it helpfull for others to know.i learnt heaps on here about e and been good practical advice e is giving you no problems and that is great and gives many people hope particularly young people who think world is over they read what you posted and many will gone to bed happy knowing people and majority e will not change their lives.If you look at threads many are not e related.I do hope you stay posting it can be helpful and insightful.You never know someone may been told today they got e and think life is over and read your posting realising life prob never change for them or sz may not as bad as they look..posts like yours could saved someone today from doing something .so feel assured we want you as you got lot to give
 
seagull said:
Most of us or people live with will be reminded each time take meds and that were it ends it good to know how meds can effect you or is my brain old with holes in and I find out from others it either the e or just getting old.There lots on here who do not have it they may just been curious come on site and like it. have e but offsprings do and it helpfull for others to know.i learnt heaps on here about e and been good practical advice e is giving you no problems and that is great and gives many people hope particularly young people who think world is over they read what you posted and many will gone to bed happy knowing people and majority e will not change their lives.If you look at threads many are not e related.I do hope you stay posting it can be helpful and insightful.You never know someone may been told today they got e and think life is over and read your posting realising life prob never change for them or sz may not as bad as they look..posts like yours could saved someone today from doing something .so feel assured we want you as you got lot to give
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correct.......someone could be having a terrible day......be thinking about doing something bad and may change their mind after reading threw this.


Being bi-polar i live on top of the world 5 days a wk and am on the bottom the other 2. those 2 days i could end up doing all sorts of sh!tty things, but your words and others here help........they help a lot.


Having peers say its okay (ul be okay) rather than someone whose 100% healthy means much much more.
 
gymrat,

Are you saying that you are on top of the world the days you work?
 
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