new here i have epilepsy & i have non epileptic seizures

[sami_1982]

Hello everyone,
I am new here i am from australia wondering if anyone else would like to help me out with some issues that i have had over the past 3 years. I have epilepsy and i also have non epileptic seizures. Is anyone else here like me? Just wondering if you are would you like to talk.

[Bernard]

Hi sami, welcome to the forum.

We have members popping in with all manner seizures. There is a lot of info posted here too. Feel free to roam about and join in (or start) any discussions you like or ask questions.

[kittykat2009]

hi and welcome to the froum
take care for now from kittykat2009

[Rachel]

Welcome to the forum. Have only just joined myself

[jeepgirl4x4]

what symtems do you have and welcome to the forum I`m new here also.

[brain]

Sami_1982:

It is not unusual to have Epilepsy and
Non-Epileptic Seizures (aka non-epileptic seizures); to have
both; but there are much heated debates
about people who have Epilepsy if they really
do have non-epileptic seizures, as those who have Frontal Lobe
Epilepsy (aka FLE) do not show up on EEG's!

Frontal Lobe Epilepsy - From eMedicine

There are more articles and newer information
regarding FLE and complex partial (Complex Partial Epilepsy)
which is pushing back the non-epileptic seizures as more studies
are being performed when people are doing web
researches from PLoS, PubMed, Blackwell Synergy,
Athens, eMedicine, Wikipedia, etc ~ as more
and more findings and the like are profound.

[POSITIVEPERSON]

Hi Sami: Welcome to the board!!!!! NICe meeting you!!!!!!!!! I would be happy to chat with you. I have epilepsy 41 yrs . I am going on 52 yrs old , and I got diagnosed when I was 11 yrs old.

Hi Jeepgirl and Rachel hope to get to talk with all of you.

Riva

[Bernard]

Far out. Thanks for the info brain. I was not aware of that.

Did you see the article I posted here:

Postictal Breathing Distinguishes Epileptic from Nonepileptic Convulsive Seizures

[execwife2002]

Brain,
Thanks for the info link on Frontal Lobe Epilepsy. I found it to be very helpful. Keep sending those links.
Marian

[brain]

Far out. Thanks for the info brain. I was not aware of that.

Did you see the article I posted here:

Postictal Breathing Distinguishes Epileptic from Nonepileptic Convulsive Seizures

Yes Bernard! I was aware of that too!


But it's also sad at the same time, because
there are also additional factors on top of it.



There's another SPIN and TWIST to this,
while the one you've been reading is quite
common. The other one is the one that is
far more dangerous when it effects BOTH
cardiac and respiratory. I've been reading
up in the European Articles (and having to
use my translator to English), and it does
not paint a pretty picture.

This is the one that I suffer from. I have
not yet seen an American or Canadian or
United Kingdom article or documentation on
this. Mostly it's Italy, Germany, France, etc.

Intractable epilepsies where cardiac and
respiratory stats are effected. And so far
from what I've been reading all are life
threatening and it effected all ages, both
sexes, and usually ended with Sudden Unexplained Death in Epilepsy in
spite of medicines, surgeries, and all other
options given and provided via research,
Hospital, Universities, et cetera. Their
studies were very interesting and well
defined and detailed. And there wasn't
just one or two Medical Doctors, but many,
some had as many as 20+ involved in these
studies!

They didn't have a "small batch" of patients
involved (n=10) - they had a "large batch"
of patients involved (n=590) or even greater!

[RobinN]

Brain - Thank you, Thank you, Thank you!
This ties up so many questions for me. I can't seem to make out if this is new information, or if it has been known for sometime.
This is exactly where my daughters is focused. She has a heterotopia in the right front lobe. It is there, visible to the non-med such as myself.

[brain]

Brain - Thank you, Thank you, Thank you!
This ties up so many questions for me. I can't seem to make out if this is new information, or if it has been known for sometime.
This is exactly where my daughters is focused. She has a heterotopia in the right front lobe. It is there, visible to the non-med such as myself.

I was diagnosed with FLE for a long time,
so yes it's been around for years, however,
I have other seizures (absence, tonic clonic)
that were notated. However ~ it wasn't until
around early 1990s when they marked me as
"intractable complex partial" and temporal lobe epilepsy. How they
switched it from FLE to temporal lobe epilepsy (Temporal Lobe)
is beyond me because FLE and temporal lobe epilepsy are two
different things!

I DO have all kinds of EEG's ranging from normal
to abnormal to grossly abnormal to epileptiform.

I will have a talk with my neurologist's Nurse to get
this sorted out as far as the specifics goes, may
be I do have more on the list (due to technology)
than what they had in the 'old days' which were
limited, but the symptoms and signs have always
been FLE - and the treatment I'm on is working.
(which you can see on my profile and if you see
on the link below on the medication chart - it lines
up).

Robin - you might also find this information
interesting as well:

EPILEPSY GENE

[RobinN]

Thank you once again for the info. I was unable to find your profile/med chart that you mention.

I spent months in conflict with my husband, because a doctor at UCLA led him to believe that there was a way they could tell from an EEG whether or not a person has Epilepsy (even if there was not an episode while hooked up). I read and read that this was not true. Even the video EEG that she had there, since she did not have a seizure while hooked up, did not verify this. After her first two seizures she had an abnormal EEG. The doctors would not speak to one another to confirm this or disprove it. They did not even bother to tell me I had that right to authorize the two to share info. So much frustration could have been eliminated. I think now after two other neurologists have corrected the misinformation, we are not in denial any longer that this is truly more than psychogenic non-epileptic seizures. I am so interested in the fact that they are now considered actual seizures and are just not showing up on an EEG.

Also one of my questions that keeps poking me...
If.. there are nutritional and stressful and environmental situations that can trigger a seizure...then IMO there are nutritional and stressful situations that can cause the so called "psychogenic non-epileptic seizures" seizure. They are one and the same to me. Why do they need to be classified as different. Seems one is written off as not needing compassion, while the other is handed a piece of paper to go "fill".

Wouldn't it be nice if the medical community would begin the healing by dealing with nutritional, physical, and environmental changes.