NES vs PNES

[RobinN]

I have just learned something, and I figured if it wasn't clear to me perhaps it might not be clear to others.
So bear with me while I attempt to shed some light on what I have learned.

I was under the impression that there was Epilepsy and then there was Psychogenic Non-Eplileptic Seizures. It was never made clear to me... well really nothing was made clear to me.. I had to find all this out while attempting to get my degree at the Univ. of Internet Research. I thought either you had abnormal brain activity or not. Now I have found that there is the gray zone.. so to speak. Non-epileptic seizures. They are not psychological but rather physical, or organic in nature. The term NES is usually used to describe seizures with a psychological cause. There is the confusion.

This is the problem I think with putting labels on that have too much of a sticky backing. They are hard to remove.

We discuss many times that there are other deficiencies that can bring on seizures. Vitamins, electrolytes, oxygen, hypoglycemia, change in heart beat, GI troubles, and many more that I have yet to discover. These don't bring on a change in electrical activity of the brain. They do however produce seizures and no one can tell the difference. There are often differences in PNES episodes, however not always.

I think we are all in agreement that the way traditional medicine handles these disorders is not adequate. Yet, given the challenges, it takes a truly compassionate, and knowledgeable doctor to walk this path with all of us. As in many professions, there are only a few gems. We call ourselves lucky when we find one that is choosing the door of health rather than the door with $$.

As with the world of Autistic Disorders, we must not allow this to be shoved into a corner and ignored. We must demand that all tests must be given. All avenues must be looked at. Instinct needs to be listened to, and those with the disorder must participate fully in healing themselves.

A diagnosis of NES means that the seizures the person has are not epileptic. Because the seizures are not epileptic, there is no need to take anti-epileptic medication. Unless someone has both epileptic and non-epileptic seizures, any anti-epileptic drugs that have been prescribed are usually stopped when a diagnosis of NES is made (unless someone has both epileptic and non-epileptic seizures).

http://www.epilepsynse.org.uk/pages/info/leaflets/factsnea.cfm#treat

I thought I would share with you something that has finally been made clear to me. I hope it has helped some of you too.

 

[Bernard]

There is a possible new paradigm for defining what epileptic means.

 

[RobinN]

This is true Bernard, for those seizures that have a direct electrical abnormality. What I am speaking of here is the gray area that is perhaps not electrical activity, but rather organic in nature. This two can go either way I am sure. The organic cause could certainly move to create psychological changes, and also I would suspect electrical ones as well. However, what I am understanding it is an area in and of itself that the traditional medical field does not put too much emphasis on. What I have learned is only of my own determination. It appears that once a person has been placed on AEDs it would be very difficult to rule out any other cause. As the AEDs create a whole other world in and of themselves.

 

[brain]

Breakdown of PNES/NES - the Two Categories (no gray area)

PNES/NES falls under two categories:

Psychogenic: which can be caused by physical problems.

Physiologic: includes but not limited to events such as trauma.
Examples: sexual abuse, physical abuse, and emotional abuse.

 

[RobinN]

For me this just confused the issue again.
What I was trying to make clear is that there is a difference between PNES and NES.
Something that had not been made clear to me before.

The Physiologic (or Organic causes as my doctors have referred to it) needs to be taken away from the abuse aspect. That has been listed more under the Psychogenic when I have researched this. What has been downplayed are the Physical reasons a body might be experiencing seizures.

In my opinion they should not be listed together. This just confuses the issue from the get-go and prevents those who are learning about this, to be steered down the wrong path. Once on AED's it is far too difficult to backtrack.

When you lump them together there is little effort to try to find out the physical causes if in fact there was no emotional/physical trauma.

This of course is MY OPINION.

 

[brain]

Here's another website with nearly the
same response as I remarked below and
with more perspectives and details:

More Information on PNES/NES

What Causes Nonepileptic Seizures?

Nonepileptic seizures generally fall under two categories: psychogenic and physiologic. Physiologic NES can be caused by physical problems such as cardiac arrhythmias and hypoglycemia. Causes of Psychogenic Nonepileptic Seizures include events such as trauma experienced in childhood including sexual abuse, physical abuse, and emotional abuse. Even the stress caused by the death of a loved one and divorce can be causes. Some studies have shown that 75% or more of NES sufferers are women and many have a history of sexual, physical or emotional abuse in childhood. Often times patients with NES also have other psychological disorders like Post Traumatic Stress Disorder (PTSD), depression, anxiety, conversion disorder and dissociative disorders.

 

[RobinN]

http://www.coping-with-epilepsy.com/forums/f22/intractable-epilepsy-tied-nutritional-deficits-944/
http://www.coping-with-epilepsy.com/forums/f22/lack-micronutrients-can-lead-neuropathy-1237/

Confusion lies in the fact that if you are given two people with seizures and they are both given AEDs to control the seizures.
The first takes the medicine while the second tries a more holistic approach. The second find seizure control by taking Vitamin XYZ.
Do they both have Epilepsy?

 

[brain]

From the other side of the fence from a different perspective

Robin:

Unfortunately the answers to
both questions can be:

YES
NO
and
MAYBE


Depending on how you're looking
at the individual itself. That's the
challenging part of Neuroscience,
since the brain is not fully under-
stood and is a complex issue. One
must not forget that there are many
other factors involved:

Patient's history
Patients' background
Nationality (YES - race has impact,
some nationality are more prone to
certain epilepsies than others)

Then there are Patients who have
birth defect - but we must chalk
this one out of the way; for this
won't apply although there are
those that DO attempt and venture
into these areas out of desperation.
For there are parents and people
who are just "had it up to here"
who goes to the extremes.

However in the light of all of this,
we must not forget there are those
people who have Epilepsy AND having
those with psychological or psychiatric
issues as well - and can have BOTH
Epilepsy and PNES/NES - which is
not unusual. This is NOT to confuse
with those who are having "Fake
Seizures" (I'm refraining the usage
of the word pseudo-seizures because
some Doctors and some Countries still
use that old terminology) to gain
attention which is a Psychological or
Psychiatric problem and they do not
have any Neurological issues at all.
(It is of interest that majority of
such people who have "fake seizures"
are often having them in public with
hopes they dial 911 and gain all the
attention and often are long winded,
totally different from those who are
what you are discussing about - I
just want to clarify this as not to draw
any confusion.)

I am still studying on PNES/NES -
Pseudoseizures when I have the time
and it is interesting ...

But it BOTHERS me why so much
emphasis is placed upon women than
it is upon men. Especially when I've
been reading so many forums, and
one lady after another after another;
it's astonishing - if you could hear
their cries (postings); it would make
you weep! Parents of children, teen
girls, women ... slammed and DX'd
(diagnosed) as PNES/NES. And they
wander one place to another, while
they continue to seize and go un-
treated, and I must report a mass
majority of them are women!

By the time they do find a good Neuro
or Epi; who really does care - they
finally get the treatment ... and guess
what ~ after the tests; they had it:
Tumors, Epilepsy or Epilepsies of
various types - finally being treated,
some have gone through surgery ...

It's all a shame.

That's why Bernard posted that thread
link below; and even I put the emphasis
on it and stressed it the need to "Can
the EEG as Gold Mine Standards" when
it is not - FLE is very common and it
does not always show up on EEG's.

And yet - while a male would often be
treated, the females often get slapped
as PNES/NES, unless they're in good
hands with a Neuro / Epi that knows
what they are doing.

It's true that I believe in late 90s or
early 2000s when it was aired on TV
when an Epileptologist spoke of PNES
and NES; and it caused an outrage
with women with Epilepsy! It was
almost discriminating, however, the
percentage over the years since that
TV airing and disclosure has decreased.
For they are finding out women are
really having Epilepsy or Epilepsies
and not PNES/NES.

It's been a slow weaning off from that
area; however that PNES/NES is still
implanted in a lot of Neuro and Epi's
mindsets and there are many who still
believes in that "EEG being the Gold
Mind Standard". It's really a shame.


=====================

Now to regard to your Nutrition &
Health Issues - YES ... that can be
a different perspective right there.
Especially if one has a birth defect
or DNA / Genetic issues or even
worse ... lest you overlook - where
the Pregnant mother did illegal drugs
and/or alcohol where the unborn baby
sustained problems where there is a
need for such. That is arranged by the
Doctor and usually a diet is set up for
such children; and oftentimes they are
set up for life in such manner.

Then there's health issues that have
risen up from the unborn baby - which
we call it "complications"; that can be
a cause - while not revealing instantly,
it can develop later on in life. (ie: a
premature baby)

There's much more around the corner
from all different angles and avenues,
enough to make your head spin in
circles ....

You'll start to feel really sorry for the
Neurologists and Epileptologists who
have to deal with each and every
Patient - one by one; especially those
who are very caring ones!

(Stop and think about it: Every person
has to be individualized, tailored, and
customized, and that Doctor has to
know every single patient under their
care ... it's got to BLOW your mind right
there! And then they're constantly
going to meetings, conferences, being
updated - so they can make sure that
all of their patients gets the finest care.)

 

[Bernard]

What I was trying to make clear is that there is a difference between PNES and NES. ... When you lump them together there is little effort to try to find out the physical causes if in fact there was no emotional/physical trauma.

I think there is a lot of truth in that. The cynic in me says that investigating this issue in depth isn't as lucrative for neuros as time spent on the prescription pad for other patients.

 

[Bernard]

More acronym fun thanks to the UK:

NEAD - Non-Epileptic Attack Disorder (NAED = NES + PNES)