This post was inspired by the many threads started by newcomers with the big question being, "I have had X# of seizures in X# of days/weeks/months. Does that mean I have Epilepsy?"
The traditional definition of "epilepsy" has been 2 or more "unprovoked" seizures more than 24 hours apart. (I've seen a couple of different definitions of "unprovoked").
http://www.epilepsy.com/article/2014/4/revised-definition-epilepsy
This ^^^is an interesting look at the revised definition as stated by the International League Against Epilepsy last year.
It tries to clear up some of the terminology. Take a look and tell us what you think.
My personal opinion:
Saying a person "has" epilepsy tends to lead toward giving up (by both patients and doctors) on trying to find the root cause of the disorder. Saying a person is having or has had seizures is a medical description of the symptoms. It still begs the question of *Why* do the seizures happen? Hmm. Let's find out.
There are so many possible reasons why. Everything from scary stuff like brain tumors, brain damage/scar tissue, and blood vessel obstructions to things that are easily treatable like blood sugar fluctuations, electrolyte imbalances, or some specific nutrient deficiency. Or you could have sleep apnea if your seizures are at night or you could have an inner ear disorder or you might even have P.N.E.S. (http://www.coping-with-epilepsy.com/forums/f23/pnes-difficult-conversation-worth-having-25577/) and there is nothing organically "wrong" with your brain at all.
The point is to keep looking, keep learning. Labeling seizures where there is no readily apparent cause as "idiopathic epilepsy" is just a fancy way of saying, "We don't know". I understand that there are going to be some cases where we just don't know but what I wish would happen is that both patients and physicians would *try harder* to find out before just accepting the pronouncement of "I have epilepsy".
(An analogous example is the recently defined "Restless Leg Syndrome". This diagnosis is very descriptive of the symptoms but it doesn't tell you anything about the *why*. There are a lot of things that could cause restless legs at night but why look into them when the doc will give you a pill for RLS?")
Then there's the whole discussion in the above article about if we should call epilepsy a "Disease" or not. They are arguing for calling it a disease because this impresses the seriousness of it on the world. What does everybody think about that?
My preferred terminology is to say that I have a seizure disorder. "Epilepsy" for me is a convenient shorthand that some people understand better.
The way I look at it is that I have had some seizures and I am continuing to look into the reasons why so as to correct this disorder.
A disorder is something you correct and put back in order.
A disease is something you cure in some cases and manage the symptoms of in a whole lot of other cases. Seizure meds attempt to manage the symptoms. They don't cure anything. (Nobody ever had a seizure disorder the root cause of which was a Keppra deficiency.)
I want to make it clear that I am not "anti" medication. I know they can be very valuable in getting symptoms under control giving a person and their doctor enough breathing room to look for the underlying cause. And I realize that, for some people, the meds are just necessary. Full stop.
So I really don't want this thread to go down that rabbit hole. Please.
When I first started having seizures I didn't have the resources available today the biggest of which is the net (yes, kiddies, there was a time before teh webz).
My neurologist said, "Thou hast Epilepsy and thou shalt take this medication forever and ever. Amen." This was after I had had one seizure. I was a scared senseless 22 year old kid. Looking back, I really wish that both my neurologist and I had dug a whole lot deeper.
I think calling the symptoms seizures encourages that digging. Saying, "You have epilepsy", doesn't.
You could say, "What's in a name?" but I think it matters. The terminology frames the discussion and subsequently the actions.
The traditional definition of "epilepsy" has been 2 or more "unprovoked" seizures more than 24 hours apart. (I've seen a couple of different definitions of "unprovoked").
http://www.epilepsy.com/article/2014/4/revised-definition-epilepsy
This ^^^is an interesting look at the revised definition as stated by the International League Against Epilepsy last year.
It tries to clear up some of the terminology. Take a look and tell us what you think.
My personal opinion:
Saying a person "has" epilepsy tends to lead toward giving up (by both patients and doctors) on trying to find the root cause of the disorder. Saying a person is having or has had seizures is a medical description of the symptoms. It still begs the question of *Why* do the seizures happen? Hmm. Let's find out.
There are so many possible reasons why. Everything from scary stuff like brain tumors, brain damage/scar tissue, and blood vessel obstructions to things that are easily treatable like blood sugar fluctuations, electrolyte imbalances, or some specific nutrient deficiency. Or you could have sleep apnea if your seizures are at night or you could have an inner ear disorder or you might even have P.N.E.S. (http://www.coping-with-epilepsy.com/forums/f23/pnes-difficult-conversation-worth-having-25577/) and there is nothing organically "wrong" with your brain at all.
The point is to keep looking, keep learning. Labeling seizures where there is no readily apparent cause as "idiopathic epilepsy" is just a fancy way of saying, "We don't know". I understand that there are going to be some cases where we just don't know but what I wish would happen is that both patients and physicians would *try harder* to find out before just accepting the pronouncement of "I have epilepsy".
(An analogous example is the recently defined "Restless Leg Syndrome". This diagnosis is very descriptive of the symptoms but it doesn't tell you anything about the *why*. There are a lot of things that could cause restless legs at night but why look into them when the doc will give you a pill for RLS?")
Then there's the whole discussion in the above article about if we should call epilepsy a "Disease" or not. They are arguing for calling it a disease because this impresses the seriousness of it on the world. What does everybody think about that?
My preferred terminology is to say that I have a seizure disorder. "Epilepsy" for me is a convenient shorthand that some people understand better.
The way I look at it is that I have had some seizures and I am continuing to look into the reasons why so as to correct this disorder.
A disorder is something you correct and put back in order.
A disease is something you cure in some cases and manage the symptoms of in a whole lot of other cases. Seizure meds attempt to manage the symptoms. They don't cure anything. (Nobody ever had a seizure disorder the root cause of which was a Keppra deficiency.)
I want to make it clear that I am not "anti" medication. I know they can be very valuable in getting symptoms under control giving a person and their doctor enough breathing room to look for the underlying cause. And I realize that, for some people, the meds are just necessary. Full stop.
So I really don't want this thread to go down that rabbit hole. Please.
When I first started having seizures I didn't have the resources available today the biggest of which is the net (yes, kiddies, there was a time before teh webz).
My neurologist said, "Thou hast Epilepsy and thou shalt take this medication forever and ever. Amen." This was after I had had one seizure. I was a scared senseless 22 year old kid. Looking back, I really wish that both my neurologist and I had dug a whole lot deeper.
I think calling the symptoms seizures encourages that digging. Saying, "You have epilepsy", doesn't.
You could say, "What's in a name?" but I think it matters. The terminology frames the discussion and subsequently the actions.
Last edited:
onder: you think so?