Questions about new epilepsy research

[Science Writer]

I'm a journalist writing a story about some novel new epilepsy research. Would it be all right to post some questions about it to this forum?

Mike

[Bernard]

I have communicated with Mike via email and he is a legitimate journalist working on a story for a magazine that has both print and online distribution.

He is looking for feedback on:

Here's some information, including links to the paper and questions. Thanks!

BACKGROUND

Comparing "the Earth's crust and the epileptic brain," an international research team claims a "robust correspondence" between seizures and earthquakes.

Epileptic seizures -- "paroxysmal increases in the amplitude or rhythmicity of neuronal oscillations" -- resemble earthquakes, which similarly "manifest
as sudden, aperiodic, potentially damaging scillations." Both phenomena are also "relaxation events," in which energy accumulated over a relatively long period -- decades or centuries for earthquakes; days or weeks for epilepsy, discharges over short burst -- usually just a few seconds.

Studying seven mathematical similarities, the research team discovered that the so-called Omori Laws governing earthquakes may also describe the gradual peaking and reduction of seizure intensity. Epilepsy and earthquakes also share certain "power laws," mathematical relationships that stay the same even in systems of vastly different size and energy.

CHALLENGING THE CONVENTIONAL WISDOM

Calling it a "universally accepted practice," the researchers say that neurologists wrongly use both intensity and duration of abnormal neuronal activity as diagnostic of epilepsy.

For the same reasons seismologists do not use intensity and duration to classify whether or not seismic activity is an earthquake, "these quantities should not be used as criteria to classify certain neuronal activity as either seizure or non-seizure," the researchers claim.

The conventional wisdom also holds that a seizure can be termed "typical." But that's wrong, too. Just as there is no such thing as a typical earthquake, there's no such thing as a typical epileptic seizure, the researchers say. "Variability" is the dominant trait of both phenomena.

THE OMORI LAW AS A PREDICTIVE TOOL

The so-called Omori Law that governs seismic activity also applies to seizure activity, the researchers say, suggesting a predictive mechanism.

Simply put, the Omori Law states that "earthquakes beget more earthquakes."

Short, imperceptible, abnormal seismic bursts (mini-earthquakes less than 2.0 on the Richter scale) help trigger and therefore precede big earthquakes. Seismologists pick up these short bursts on a seismograph, but we don't feel them.

"In seismology, it has been recognized that small, undetected earthquakes provide a major if not dominant contribution to the triggering future of earthquakes of any size," the researchers write.

Using this analogy, short bursts of abnormal brain electrical activity unperceived by the epileptic patient or clinician but detected on an EEG -- which the researchers call "a neurological seismograph" -- should also trigger and precede future seizures of any size. Their findings suggest support this idea.

THE POWER LAW AS A PREDICTIVE TOOL

A second mathematical law that describes earthquake activity -- the power law -- also governs seizures, the researchers say, providing yet another predictive tool.

A power law says that "the longer it has been since the last event, the longer you can expect to wait for the next event."

If it took a day for the train to get to the station, the next train should come in about another day. If it took five hours for the train to get to the station, the next train should come in about five hours.

The researchers show, with mathematical results they graph, that this same idea holds for both earthquakes and seizures.

CONCLUSIONS

"The totality of our findings justifies a novel approach to forecasting seizures that encompasses not only their intrinsic triggering capacity, but expands the set of monitored observables, from clinical seizures to all types of epileptiform activity (subclinical seizures and other related paroxysmal oscillations)," they write.

By identifying what they term a "universal dynamics for systems as diverse as Earth and brain," the researchers presage "a general strategy for forecasting seizures, one of neurosciences' grails."

PAPER

Epileptic Seizures: Quakes of the brain?
http://arxiv.org/abs/0712.3929

Paper in PDF format:
http://xxx.arxiv.org/ftp/arxiv/paper.../0712.3929.pdf

LEAD RESEARCHERS

Ivan Osorio, MD
http://www2.kumc.edu/neurology/osorio.html

Didier Sornette, Ph.D.
http://www.ess.ucla.edu/faculty/sornette/

RELATED STORIES

Earthquakes may hold clues for treatment of epilepsy
http://www.guardian.co.uk/science/20...edicalresearch

Brain 'seismology' helps predict epileptic attacks
http://www.newscientist.com/article/...c-attacks.html

QUESTIONS

1) What is your opinion of the research paper's basic points?

2) Do you believe the research challenges the status quo about epilepsy? Does it do so effectively or unconvincingly and why?

3) Why are seizures hard to predict? Could a way to monitor so-called "subclinical seizures" offer a way to predict them, if the conclusions here pan out?

4) Would clinicians find this research helpful? Would you find this research helpful?

5) Any other comments?

6) What is your official title and position?

Best,

Michael J. Martin, M.S., M.B.A
Science and Technology Writer and Editor
Member: National Association of Science Writers (www.nasw.org)
National Press Club (www.press.org)

Mike has indicated that he will need the full name and city for anyone willing to provide feedback for his article. Those interested in being part of the article are encouraged to send him a PM. Those just interested in discussing the topic, feel free to add your in this thread.

[Bernard]

1) What is your opinion of the research paper's basic points?

It's interesting. I hear from people all the time that have had "negative" EEG tests (for seizures) when trying to diagnose epilepsy. I think way too many are diagnosed with psychogenic non-epileptic seizures when EEGs come back clear. If this research leads to a new paradigm to investigate when conducting EEG tests to more accurately establish epileptiform activity, it has the potential to help a large percentage of people who are currently, IMHO, not getting the proper diagnosis or help that they need.

2) Do you believe the research challenges the status quo about epilepsy? Does it do so effectively or unconvincingly and why?

I would like to see some research on how testing for "paroxysmal increases in the amplitude or rhythmicity of neuronal oscillations" compares between people diagnosed with epilepsy versus those diagnosed with psychogenic non-epileptic seizures (psychogenic non-epileptic seizures).

I'm not sure what difference the new paradigm makes for people already diagnosed with epilepsy - unless some enterprising company makes a personal/home EEG system that people can wear/use all the time, it's not of much use to those who don't have predictable seizure patterns. I can't imagine them going to a doctor every other day trying to get an EEG prediction for their next seizure.

3) Why are seizures hard to predict? Could a way to monitor so-called "subclinical seizures" offer a way to predict them, if the conclusions here pan out?

Actually, many people have seizure patterns are pretty consistent - from catamenial epilepsy where seizures occur around menstruation periods (following the hormone cycle) to people with nocturnal only or morning only seizures with a regular interval.

I think there are many possible reasons for the variability in seizure activity - diet (carbohydrate intake seems most directly related), vitamin/electrolyte deficiencies, sleep patterns and other factors.

4) Would clinicians find this research helpful? Would you find this research helpful?

See response to Q1.

5) Any other comments?

I think this research does hold some promise as a new diagnostic paradigm. I also think it may ultimately provide greater validation for EEG neurofeedback as a long term treatment option for epilepsy (to normalize brain wave function).

6) What is your official title and position?

Your host at CWE.

[brain]

1) What is your opinion of the
research paper's basic points?

The "putting the cart before the horse"
factor and "jumping the gun" as well
as the "Sterotyping of Women's Issues"
still prevails in this Neuroscience and
Neurology.

And in addition the resistance of looking
into alternative avenues other than
surgery and medicine, such as neurologist-
feedback, Biofeedback, Natural realms -
which may include: Yoga, Relaxation,
Exercise, natural herbs (non-epileptic
trigger) and diets, et cetera.

As well as to dispel all the myths, old
wives fables; and to "can the textbook
type cases" for it is a fact - which is
true that there are some individuals
which do have a pattern of similarities,
but the major issue remains - you have
approximately 40 million worldwide that
are NOT textbook types. As I have
posted repetitiously "no two persons
are alike, for we are all like a snowflake,
each of us are unique and special in
every way."

We also need to scrap; and it's now just
being realized that the psychogenic non-epileptic seizures / non-epileptic seizures aka
Pseudoseizures had been a little over-
board and abused and misused; HENCE
the "EEG being the Gold Mine Standard"
fails to reign - for FLE (Frontal Lobe
Epilepsy) is a perfect example and to
another, seizures that are so deep with-
in the brain that aren't able to record
and then there are those ... especially
revolving around females - the women's
issues; which are not fully understood
and yet they are deemed "psychiatric"
to "psychological" and they continue to
seize and suffer when in fact they have
Catamenial Epilepsy.

2) Do you believe the research challenges
the status quo about epilepsy? Does it do so
effectively or unconvincingly and why?

I believe Neuroscience is and has
progressed and has come a long ways
since having grown up with them since
being a tiny toddler. But, I must state
in turn they have a long, long ways to
go.

1) I am happy that they've finally come
to realization that they are able to treat
ASAP especially when it comes to babies
and children; for the earlier it's caught,
the better their chances are, and it's
improving as technologies is advancing.

2) I am unhappy, because they aren't
really putting that much effort into fully
looking into women ~ and stereotyping
of them still persists.

3) The privilege of "discharge", "bans",
and "psych-wards" - is being overly
abused (male & female alike). When the
Neuroscience (Epileptologist or neurologist-
logist) are unable to find an answer;
they are just to "gung-ho" to mark'em
off as "psychiatric" or "psychogenic" or
"psychological" (but this isn't to state
or imply those who have Epilepsy and
have both Epilepsy and Psychogenic
Seizures for one can have both in some
cases; I am not in reference to this
issue at all, but rather to an individual
that is attempting to seek help and
wanting help, to control and stop the
seizures ~ after all - the Hospital or
their Primary sent them there in the
first place). It's a problem and it needs
to be stopped. There is nothing wrong
to say "I DON'T KNOW" or "WE DON'T
KNOW".

Neuroscience hasn't reached to its
fullest proximately, as stated above,
it still has a long ways to go. The brain
is a complicated, complex, and a very
delicate and yet a very unique and
awesome marvel! Scientists are still
studying it .. it will not kill a Doctor to
say, "I don't know, but we are still
learning."

Neuroscience Specialties needs to learn
to swallow some pride and some egos
needs some bubble-bursting. They need
to need to learn to be a little more
sensitive overall - while the progression
is moving forward.


3) Why are seizures hard to predict? Could a
way to monitor so-called "subclinical seizures"
offer a way to predict them, if the conclusions
here pan out?

If it were possible to predict a seizure,
it would make it all too easy to block a
patient in a Hospital for a video EEG! It
would have been an Epileptologist's
or a Neurologist's dream come true!

Patients would only have to be there for
1 or 2 days; and give them what they
wanted specifically. It would be all way
too easy!

But alas, get back to reality, wake up
and smell the coffee, it's not possible!

For example, I am extremely irregular
in the menses cycle; my cycle can start
15 days to as long as 62 days.

All modes and methods to control it had
resulted failure; simply put, it was out
of control - there was no way of knowing
when the cycle would start. Extensive
lab-work ups, birth control, hormone
monitoring, you name it under the sun,
it had been done - FAILED! They tried
to nail it so they can capture it on EEG
but there was no way to catch the
seizures 1-2 days before it strikes.

And why I had the 'season' between
Aug/Sept - Feb/Mar; isn't fully under-
stood either ~ but it ranks the highest
and is medically documented and noted,
for years.

They know I have it - along with ovarian
cysts, 12 pregnancies and only 1 live
birth (11 miscarriages) - my whole
system is out of whack.

Then there are other seizures on top of
it. Medications controls the others, but
they haven't been able to control this
one.

Even the offering to take Diamox 15
days before the cycle begins ... was
slightly 'off-beat'; NOW - how was any
one supposed to know when that 15
days before the cycle begins?



Just to give you an idea. It frustrates
the Doctors treating the Patient and it
frustrates the Patient as well who is
suffering from it. There is much more
to it that what is posted.


4) Would clinicians find this research helpful?
Would you find this research helpful?

YES - it would come to realization the
need and the imperative importance
and necessities that Women NEED to
be looked upon more seriously:

1) Knock it off with the Stereotyping
2) Quit it with the psychogenic non-epileptic seizures/non-epileptic seizures because
everything came out 'normal'
3) Come to senses that Female Bodies
are completely different than of a
Male; and are more complex.
4) Realization that Women are suffering
5) Put the BRAKES ON - and take a
back seat look of just how many
women/females have been mislabel-
ed, misdiagnosed, tossed into the
psych-ward, sent off to Psychiatrists
or Psychologists (deemed as psychogenic non-epileptic seizures
or non-epileptic seizures), discharged / banned after
one place to another - wandering
around like "Hobos" - and they're
seizing.


5) Any other comments?

YES - To have Neuroscience to take a
backburner look at alternatives available
that works; such as Neurofeedback and
Biofeedback and others. They use these
in other Medical Specialties, why not in
Neurology? Why does it have to be all
Medicine and Surgery in Neurology?
This question --- I ask in return.

6) What is your official title and position?

Moderator of CWE. Online Advocate of
Epilepsy Foundation at:
www.myspace.com/headstorms
Online Advocate Worldwide International
for Other Epilepsy Foundations
Award Winning Neurology & Neuroscience
Resource Center and More.
at Myspace.com

Retired Ordained Theologian & Administrator

[brain]

I just also wanted to add an
addendum:

I have EEG's (all types - from the
standard to digital montage (modern).)
Which the results were primarily mainly
abnormal, epileptiform, and some
normal readings - but normal readings
were rare.

However my EEG's are "scatter brained"
types; while my readings have been
everywhere - but dominates to the
Right Side of the brain.

I have had tons of Scans - CT, MRI, MRA,
PET - all types with and without
contrast, with tracers, normal, et
cetera - all of them were abnormal;
and even with hot spots.

I've had 2 Wadas - 1st one with the
verbalized report (original report is
missing - 1989) that I was neither
Right or Left Side denominate; the
2006 Wada - which was half-done,
was showing I was Right Side deno-
minate. (But I am a "southpaw" -
a left-hander, but School system made
me write with my right hand - so I
have the ability to write with both
hands easily. It is very clear I'm a
southpaw, with my nickname of
Southie - not just because of Southern,
but a slang for a leftie, I actually tore
up my rotor cuff on my left shoulder,
badly, from overuse and abuse in
sports related injuries)

Neuropsychological Tests performed
since 1966 to 2006 - which in 2006
had to be called off for certain tests
were provoking seizures, hence the
need for the Wada to be pushed ahead.
The Neuropsychological Tests from the
past revealed to be to be superiorly
brilliant and ambidextrous and had
the ability to use both sides of my
brain; however there was a flip-side
of it - I was a roller coaster. I had ups
and downs. My brain wasn't always in
sync and some tests would actually
provoke seizures.

Seizures wasn't first detected when
I headed to Shands Hospital for an
audiology test, for I was born with
birth defects, was very dysarthric,
already in speech, language and
memory therapy (was born in 1962)
at a very early age and I was not
showing any signs of improvement.
But in turn it revealed I had a very,
very mild hearing loss. But while at
Shands, they noticed that at a certain
frequency / hertz, it triggered a seizure.
In 1967, I was asked to return - they
wanted to do it again; and their neurologist-
logy Department was there again; and
same thing. Then later on in early 70s,
Musicogenic was detected. I didn't know
what a Musicogenic was.

I suffered and still do suffer from
Nocturnals - and electrographics still
persists during the Stage II, III and IV
and sometimes in V during sleep.

I was given TWO chances of having
Temporal Lobe Surgeries by the SAME
Brain Surgeon - TWICE! The first time,
the HMO denied it, stating that I was
too young, and the Surgeon appealed
and having the Epilepsy Foundation of
American Chairman there on that appeal
and they had a solid case to present.
THEY LOST! I was only in my early 20's.
NOW if I were a male - would that have
been a different issue???

The SECOND TIME, with the case he had
and with more advanced technologies to
back it up and sustain his proof and
along with my great Neurologist and a
different HMO - and as unreal as it is;
THEY LOST! The HMO was blaming it on
the 1988 MVA! It had nothing to do
with the 1988 MVA at all. They argued
and had all the proof showing it existed
before that and I needed the surgery.
THEY LOST! The Surgeon called me to
his office and told me this: He could
only see trouble for me in the future;
he threw in the towel and gave up. (He
was retiring anyway) Something so
simple that he could fix and do that
could possibility prevent a lot of trouble
and problems down the road - all I can
state is ... HE WAS RIGHT!

I was never treated for this as a child,
but once I became an adult, my retired
Pediatrician gave me a business card
to a Neurologist, but that Neurologist
who worked with them - never was my
neurologist, but did a lot of my EEG runs
when I was in School - he knew me very
well. It was then when they finally put
me on medications in 1981, trying this
and that and that.

I was married immediately after Senior
High, and never had the opportunity
to schedule an appointment with the
Neurologist for I ended up with a grand mal SE
(Grand Mal Status Epilepticus) in my
sleep and freaked my newly wedded
husband out. The very Doctor I was
to call, his partner had to take me out
of the SE. They just didn't know what
to put me on. But the neurologist who did
all my EEG runs, when I had another
bout with grand mal (tonic-clonic) and we
ended up to the closest Hospital and
he was on call - he put me on Dilantin,
and Dilantin did the trick.

I had been on Dilantin for many years
with Klonopin right behind its tail, and
Mysoline not too far behind.

While my ex-husband, we were divorced
after 23+ years of marriage; he kept
changing HMO's like crazy, and because
of this ... I had been on many other
anti-convulsants (Phenobarbital, Myso-
line, Depakote, etc) - and they all just
collapsed on me; either I developed a
resistance to it because having been on
it for such a short period of time (on
and off, on and off - never truly giving
any time for the medication(s) to work).

In turn - I always ended up being stuck
with Dilantin or Dilantin & Klonopin (at
HS to tone down those nocturnals).

Because of my ex-husband's bouncing
around with HMO's had wrecked the
treatment of these epilepsies. It is like
what the Doctors have stated; made me
Intractable.

My allergy anti-epileptic drug list in order due to
the most severity first is:

Keppra, Phenobarbital, Tegretol,
Trileptal.

Dilantin has been added because I had
been on it for so long it has destroyed
and wrecked a havoc on my gums and
teeth much to my balking and dismay.
Dilantin has been my baby and has
worked!

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

I am currently on Zonegran, Klonopin
and Folic Acid.

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

I do not have any side-effects with
Mysoline - but they will not touch it
nor use it because it converts into
barbiturates (same as Phenobarbital).
They will not risk or touch this med.

I have been on Depakote on and off
way too many times in too short of
a time span for that medication to
even be given time to work. They won't
touch that one either. Same way with
Felbatol.

Diamox is worthless with me.

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

ATIVAN - DIASTAT - is used in
emergencies ONLY (back-to-back
or SE seizures). And I have to be
monitored heavily; for once this
medication wears off - it can actually
backfire and provoke more seizures,
until a Nurse found out once I get
out of it - start feeding me and
getting me something to drink, even
when I don't feel like it and get me
moving and talking. They'd rather
have me throwing up, than to have
more seizures, but gradually as it
phases off - according to them, they
know when it's time to put me to
bed when I start becoming sluggish
and not making sense.

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

The dangers of all of this right now
at this stage is - they cannot let me
sleep. Even when the medics are
summoned, they keep me awake.
It's normal for a person that have
had a seizure to go to sleep, but in
this case, they're doing just the
opposite, they keep me awake, because
once I fall asleep, it's been recorded
on video EEG twice, that they cannot get
me out of sleep and if they are able
to, I am not in sync. I've had flatliners
in those EEGs.

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

I am no longer a surgery candidate.

I do not qualify for anything anymore.

All they can do now is just give me
anti-epileptic drugs.

And to quote a quote

"There is such a thing as 'too late'..."

It's sad and chilling. Had opportunities,
but HMO stood in the way. Since 2005,
I've been on a spiral decline, and still
going downhill, and I'm way below 100
pounds. (The Staff photo you see above
is when I was on the other anti-convul-
sants, which made me on the heavy
side - I do not like people seeing me
what I look like now; because of its
destructive path).