epilepsy?

[Cubster]

How is epilepsy defined as opposed to just having seizures? If seizures are caused by or secondary to brain injury/stroke, is it considered epilepsy? Does it depend on EEG results?

[RobinN]

It is usually defined as one having two or more unprovoked seizures. Once the threshold is lowered enough that the brain seizures as a stress mechanism, they label it Epilepsy.

What frustrates me is that at that point they only treat the label. They do not continue to find the cause of the seizures. We have accepted that method of care, because we are scared, and don't have much knowledge at the time of diagnosis to find alternatives. We want it to stop, so we allow the patient to be medicated. Occasionally this works, but many times it does not. Or it takes years to find a med that is somewhat successful, or that the patient can tolerate. At that point, they have forgotten how good they feel, and are willing to just remain on a drug because it is tolerable, and seizures appear to be reduced. Or if meds are reduced the seizures increase, so the patient is scared to change the status quo.

EEG results are hit and miss. You can have an abnormal EEG due to poor nutrition too, or you can have normal results when it is evident that seizures are occuring. These test results are usable for some but not for others. Doctors don't know why some are normal and others not. Many conventional doctors are unwilling to say the words "I don't know why you are having seizures." Nor are they willing to offer ANY of the non-med, non-surgical alternatives. They only know what they have learned in textbooks, and what has been accepted over the years as gospel.

Nutrition and Neurofeedback have played the number one role in my daughters seizure control.

[Cubster]

It is usually defined as one having two or more unprovoked seizures. Once the threshold is lowered enough that the brain seizures as a stress mechanism, they label it Epilepsy.

What does "unprovoked" mean?
If Gideon's is a direct result of his stroke/brain injury does that qualify as "provoked"? Or would that only be if the seizure stayed within the exact area of the stroke?

I guess it doesn't matter per say. I'm just wondering.

I wish I could get inside his little bean and see for myself! The whole issue with the focal slowing on the entire left hemisphere has me flipped inside out and backwards. Wondering what it means and how it could be affecting him or if this is the result of seizures and then what does it means long term?

Wow, did that make any sense at all??

Colleen

[Ann T.]

Hi again, Colleen:
'unprovoked' means that nothing has been the root cause of Gideon's seizures. Another good word for 'unprovoked' is idiopathic (ID-dee-o-path-ic), which means that there may be no known cause or origin of Gideon's epilepsy. For instance, I had my first seizure in 1990 totally out of the blue, so mine has been labeled idiopathic.
By the way, you're not the only one who would like to examine your son's little 'bean'. I'd LOVE to pick apart my OWN little 'bean' because sometimes I feel like researchers aren't moving fast enough. When I mentioned off-hand to my neurologist, "Why can't brains be transplanted, like kidneys, livers & hearts?" He looked at me without missing a beat & said, "Too controversial & too complicated, and like a lot of organs, an extremely limited amount..." So I guess I got my answer...take care, Colleen.
*PS: The questions you asked above regarding the focal slowing & what this all means long term are EXCELLENT questions to ask Gideon's neurologist.

[Cubster]

I read this tonight on epilepsy.com

"It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar....
The seizures in epilepsy may be related to a brain injury or a family tendency, but most of the time the cause is unknown."

So I'm going to assume that because Gideon had a stroke that his seizures aren't idiopathic (can't be proven since we haven't picked them up on EEG so we don't know where they're coming from) but rather from the stroke and aren't caused by some other medical condition.

Therefor, he has epilepsy...

I think I get it.

[Ann T.]

Colleen:

Hi. Everyone here at Coping With Epilepsy(CWE)does their best to provide support & info with regard to understanding the mystery that is epilepsy. Please feel free to visit the forums & chime in when you have ideas. Most of all, feel free to ask questions when you need to know about diets or medication which can help control epilepsy. I feel that of the 3 support groups I belong to, this is the best one. As always, take care!

[brain]

I have to agree with everyone's postings; however I did
remark to the Neurology Department in a *gripe* that
MAN could shrink heads long before medical science even
existed but they cannot do head transplants or do anything
in perfection with human heads yet; while they can elsewhere
in the body? (Go figure! But it IS the truth!)



However, I am one of those who wishes to jump inside of
my own head and find out what the blasted problem is and
I don't know about the others, but I am also one of those
who are those "Fix-It" Pros. Honestly, there have been times
I am like ...

"Ok, umm, these guys here spent years in College / Universities
and they can't fix me and here I am, I can fix and repair just
about everything around here, I am just about ready to "Fix
It" myself if I could ..."

{I am that brassy - and shush Crazy Monkey! *laughing*}

Nonetheless, You have my sympathies and I can understand
the frustrations within - of "just not knowing"; but going under
the presumptions and assumptions is a dangerous thing --> so
I strongly advise you not to wander there and just leave the
whole field wide-opened, because one day....

YOU
JUST
MIGHT
GET
YOUR
ANSWER!

[LuvMyTwins]

the epilepsy.com definition states that you have "epilepsy" if you have more than one seizure that is idiopathic.

Yet, it also states that one of the issues besides alcohol withdrawal is low blood sugar. I was NEVER tested for low blood sugar.....they finally found that when I was 39.

I find that the medical community, at large, puts the label on before looking at the cause of the symptom. I find that they forget that seizures--not for all, I'm speaking idiopathic--are a symptom.

In my case, I had my naturopathic md call my neurologist---my neurologist finally admitted that his assessment may be wrong. That was a duh moment!!

[RobinN]

Keep asking "Why".

My daughter has seizures that are many times around the time of the month, so that is labeled catamenial seizures. She also has seizures with a known cause of hypoglycemia (low blood sugar). I use labels because it helps others to know what is going on, but the labels mean nothing to me. I keep asking why she has these triggers, and continue to work on figuring out what will correct the symptoms.

Have you read anything about neurofeedback. I do believe it has been used with stroke victims. If I find info on that, I will bring it here.

http://www.eeginfo.com/research/stroke_main.html

[LuvMyTwins]

Love neurofeedback...I've been doing it for a while now. Also, acupuncture for the stomach issues. They are truly (and the vitamins/minerals) the most helpful "medicine" I used. Would love to read the article as well!!---LMT