I don't count since I've never been controlled

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Belinda5000

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This is how I feel and I live with my sz's and I get over my seizures.
The last ones I had was the week I was in the hospital week -10 I had 5 that week when they gave me carbamazapine instead of Tegretol.

Since I'm not controlled my seizures don't matter because I don't go more 2 1/2 months anymore . so why do people gripe who go 6 and 11 months when there are people having worse off that's what I want to know?:ponder:
 
I think everyone has the right to gripe. I gripe sometimes and it has been years since my last seizure. Everyone's case is different and puerile deal with stress differently. That is why we are all here. Because regardless of our case, we understand what we are going through and can help one another. I do, however, understand what you are saying, Belinda.
 
I have to agree with N Sperlo. Everyone has a right to complain & we all need to at some point.

No matter how badly off you are, someone is going to have it worse and I don't feel that discredits anyones problems.

I think that by your standard even you wouldn't be allowed to gripe because I have a minimum of 6 seizures every week and you have less than that. That would mean that nobody is allowed to gripe on this site except me unless someone else has it worse and then only they can gripe. That would defeat one of the main purposes of this site which is to be able to vent our stresses to others who have a better understanding of them.

Also, I don't think numbers actually tell the story of how we're effected by our seizures. Even someone that only has 1 T/C a month can be greatly effected by it not knowing when it's going to come but knowing it will, as well as how they might be treated by friends/acquaintances/employers/coworkers.
 
I agree with the other guys that it's great to be able to vent and gripe, which I do about various things in my life, as we all do, but I am always aware that all the problems I have are what my son-in-law calls "first-world problems". Every single one of us on here has access to a computer, which probably means that we also have a safe, warm place to live, plenty of food to eat, plenty of fresh water for drinking and bathing, access to medical care, etc. which makes our lives safer and more comfortable than that of the vast majority of people in the world. There are literally billions of people who would trade places with any of us in a heartbeat, and I seriously doubt that we would trade places with any of them.

That said, our problems are still our problems, and we have a right to experience them and gripe about them.

Carry on!
 
I don't have much to add except to reiterate what has already been said. I average 6 seizures a week (this past week has been good; only four, but the week before was bad as I had 10). They thankfully are not tonic-clonic, and they are also 99% nocturnal - something I am exceedingly grateful for as well. So does this mean mine don't count, and that I wouldn't have the right to complain? One's statement of seizure frequency or seizure type in no way reflects the impact seizures have on his/her life. And it does not take into account the associated medical issues and the impact those may also have.
 
I never know what type I might have, since I have about 5 diffferent type and I refuse to sit at home and wait for my next seizure.I go out and live my life and ppl think I'm stupid to do that because I might seize .I have tonic clonics but that doesn't stop me from living my life.
 
I also agree with what has been said. And I agree with you, too, Belinda, because I have been down the same path as you-- I have refractory E, have experienced SP, CP, AND TC seizures over the years, have tried way too many drugs, had brain surgery that didn't work, have the VNS and still have seizures. I've suffered several serious injuries due to the seizures. After my lobectomy, I went into a depression that I never want to experience again because I was suicidal then, too. And to this day, I still suffer from depression but it isn't as severe as it once was. Plus the psych put me on an anti-psychotic med back in 2004 that made me diabetic, just to add more to my dilemma.

Like arnie says, it seems like all here on CWE have a safe place to stay and access to care. So who's to say that one has it worse than the other? We all have a right to gripe!
 
Belinda5000 said:
I never know what type I might have, since I have about 5 diffferent type and I refuse to sit at home and wait for my next seizure.I go out and live my life and ppl think I'm stupid to do that because I might seize .I have tonic clonics but that doesn't stop me from living my life.
Click to expand...

I go out and live my life, too, despite my seizures, although mine now are mostly CP. There was a time when I did have TCs and 911 was called because I was out on my own.
 
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You can't let it keep you down. Go out and live to the fullest.
 
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