Terminology : "Epilepsy" vs. "Seizures"

[Fedup]

To say Epilepsy is a disease is to lump it in a category that a lot of people do not want to hear about or know about unless it comes knocking at there door and even then it scares them and all that people can think of is a death sentence an every day example of this is "cancer". So is epilepsy a death sentence? this is a question that should be considered. Although like hearth disease or cancer it is something serious, however I do not see it as a death sentence. The psychological, and social consequences of this condition are quite debilitating and thus can lead or cause other personal and medical problem which should always be considered in any medical definition or analysis. For a doctor or a neurologist to use any definition where a seizure is described as an event or epilepsy as a disease that involves recurrent unprovoked seizures in my mind is not very accurate.

Firstly a seizure is not an event, it is as a result. Second epilepsy does not involve unprovoked seizures, all/most seizures have a trigger, that is to say there is something which can be a cause, and this no doctor or neurologist can know. So how can a seizure be unprovoked. Epilepsy is a term which encompasses a wide range of disorders and none of these are of lesser importance or seriousness to the individual involved. Epilepsy is something I believe which needs to be treated on an individual basis like different hearth conditions or different forms of cancer. Neither the old or new definition do anything to counteract the way epilepsy is approached by the medical profession or the stigma held about epilepsy within this profession which has frustrated and infuriated those affected and in so doing can hinder any treatment.

I may and could be very wrong in my thinking but each individual with epilepsy has a serious complaint, irrespective of the category or class it is defined as.

 

[AlohaBird]

I have found that both "epilepsy" and "seizure disorder" can be useful terms. I'll often use one or the other depending on the audience. No matter which term I deploy, I find I need to do a bit of educating a the same time, since the default image conjured up is almost always the superficial one of someone flopping on the floor.

Too true unfortunately.

I don't refer to epilepsy as a "disease" (though it can certainly be as devastating as any illness) since that can also summon up the wrong picture in people's minds. Sometimes it helps the listener if I make it somewhat analogous to asthma or diabetes: A chronic vulnerability that requires vigilance and care, and despite those may still be beyond control.

That's a very cogent way of expressing it.

 

[AlohaBird]

I like that "diagnose and adios" term. I think that is a very accurate description in many cases. I also agree that it depends on the doc as to how much digging and patient input is accepted as a part of the process.

In some cases, I think it is the doc learning to "trust" a patients judgment. I know my neuro and I disagreed for many years, and I would become frustrated with him and think of firing him and I'd get other opinions, but neither gave in and after 15 years we are at a point where we kick ideas around far more than we used to do. I think he now knows that I do some research, and that I expect real answers to my questions.

It must be that some docs see patients who have little interest in knowing more or bringing anything to the table, and may have to learn that you, as an individual patient, are more probing and thoughtful on the subject than others they may see everyday, who just want a pill to fix it and call it a day.

As for terminology, I also use both depending on the audience, and I always refer to it as a disorder, correcting those who say it is a disease.

This is very true.
We do a lot of often very justified "doctor bashing" around here but, at the same time, we need to take responsibility for getting informed and getting involved in our care decisions if we expect doctors to participate in a higher level of dialogue with us about it.

There are lazy doctors, yes, but there are also lazy patients.

The individuals I wish doctors would try a little harder to reach out to are those who are newly diagnosed. These people are not lazy, they are just completely at sea. I remember how that felt and hear that same frustration and being overwhelmed and at the ragged edge of panic in a lot of posts here on CWE.

These individuals are getting more clear information from this forum than they ever got from their doctor. Basic stuff like a clear explanation of what an MRI is scanning for as opposed to an EEG. And we're not even doctors, just people with BTDT experience.

 

[AlohaBird]

To say Epilepsy is a disease is to lump it in a category that a lot of people do not want to hear about or know about unless it comes knocking at there door and even then it scares them and all that people can think of is a death sentence an every day example of this is "cancer". So is epilepsy a death sentence? this is a question that should be considered. Although like hearth disease or cancer it is something serious, however I do not see it as a death sentence. The psychological, and social consequences of this condition are quite debilitating and thus can lead or cause other personal and medical problem which should always be considered in any medical definition or analysis. For a doctor or a neurologist to use any definition where a seizure is described as an event or epilepsy as a disease that involves recurrent unprovoked seizures in my mind is not very accurate.

Firstly a seizure is not an event, it is as a result. Second epilepsy does not involve unprovoked seizures, all/most seizures have a trigger, that is to say there is something which can be a cause, and this no doctor or neurologist can know. So how can a seizure be unprovoked. Epilepsy is a term which encompasses a wide range of disorders and none of these are of lesser importance or seriousness to the individual involved. Epilepsy is something I believe which needs to be treated on an individual basis like different hearth conditions or different forms of cancer. Neither the old or new definition do anything to counteract the way epilepsy is approached by the medical profession or the stigma held about epilepsy within this profession which has frustrated and infuriated those affected and in so doing can hinder any treatment.

I may and could be very wrong in my thinking but each individual with epilepsy has a serious complaint, irrespective of the category or class it is defined as.

The level of ignorance in some people out there continues to astound me. Such as, if you say it is a "disease", they ask how do you "catch" it as if it were ebola or mad cow disease. This is one of the reasons why personally I prefer the term "disorder".

The point you make about there really is no such thing as an "unprovoked" seizure is exactly what I was trying to get at originally. Just because we haven't found what caused it/them *yet* doesn't mean there wasn't a reason.

"Idiopathic" shouldn't mean "We don't know and we are giving up now". It should, (and does to the better doctors of this world) mean "We don't know *yet* but we are going to keep looking as long as the patient cares to keep trying to find out."

 

[Fedup]

I agree it it quite mind blowing when one considers the amount of intelligence reportedly on offer, but one is always going to have ignorance as long as there are restrictions or obstacles placed in the way by those who reportedly have a knowledge. Unless you put intelligence and knowledge working together you can never expect to change the way something is perceived. However as you pointed out there really is no such thing as "unprovoked" and so the knowledge acquired needs to be changed especially by those we rely on most. You are right when you say "Idiopathic" shouldn't mean "We don't know and we are giving up now" but the unfortunate truth is the vast majority of the medical profession have given up and find it easier to just say "I do not know and we will never know, take these".

In reality a little knowledge breads contempt and this was never truer than when you sit face to face with some doctors. A good definition would be one that realises and takes account and is written in conjunction with the patient.

 

[Dutch mom]

"

Idiopathic" shouldn't mean "We don't know and we are giving up now". It should, (and does to the better doctors of this world) mean "We don't know *yet* but we are going to keep looking as long as the patient cares to keep trying to find out."

__________________

Isn't the term 'cryptogenic' is usually used for "we don't know (yet) but we think/suspect there is a underlying cause?
'Symptomatic' = a known cause. 'Ideopatic' = no cause/unexplained.

As long as they keep looking for a cause, they might find out a (new scientific) cause and ideopatic might change in symptomatic.

Isn't this precisely how they do discover new known things causing epilepsy? Especially many 'new' genetic causes were discovered in the last decade and will be discovered in the future. Several of our Dutch forum's children changed from ideopatic or cryptogenic to symptomatic after an chromosomal mutation in their DNA was discovered.

 

[AlohaBird]

This is an interesting article explaining the subtle shade of meaning between "idiopathic" and "cryptogenic".

http://emedicine.medscape.com/article/1140724-overview

It makes the same point FedUp was making above

"Whereas the term idiopathic in medicine usually means “of unknown cause,” idiopathic epilepsies are not truly of unknown cause; this confusing terminology will most likely be corrected in the upcoming International League Against Epilepsy (ILAE) classification system.[3]

In epilepsy, idiopathic seizures are genetically determined and have no apparent structural cause, with seizures as the only manifestation of the condition.

The difference between symptomatic and cryptogenic in this context is subtle: to say that an epilepsy is symptomatic means that the etiology is known, whereas to say that it is cryptogenic means that an underlying etiology is apparent but cannot be documented objectively. Thus, the boundary between the 2 is largely dependent on our diagnostic and imaging techniques "


That said, I kind of like the term cryptogenic. It calls to mind cryptography. It sounds like an intriguing puzzle to solve.