Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Epilepsy / June 2007

Tip: Looking for answers? Try searching our database.

Websites of use to newer people

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
G. - 15 Jun 2007 03:56 GMT
Re-post from last Autumn and April 7 of Ep. General Websites

Below is reduced (in volume) websites I posted and about 5, which
others added of their suggested sites, for information related to
Epilepsy, Seizures, treatments etc.
  The one website/group that Dave recommends near end has more
detail
on Sudep (Sudden unexplained death from epilepsy).
 That group you have to Register and set up an ID.? to be able to
access or post there.  I didn't go look at what else was involved.
G./  -->

The First Aid Site, that lists what each seizure type looks like,
is at ***s below. Inside that link is another one for First Aid in
Water (swimming). If the page has a coloured background, there is a
button that says "Printable Version" and if you Click on that, it
takes off
colours so you can print it on White Paper to keep.

A new site (to me) someone suggested is at http://www.epilepsy.com .

The main Idaho Epilepsy News site is at http://www.epilepsyidaho.org
.
(Julie Walton posts here regularly and maintains the Idaho Website
for
people there and us too. )

Within that are links that also go through an Education area called
Learn about Epilepsy -- at http://www.epilepsyidaho.org/learn.htm.

Often some symptoms people **exhibit give clues to *type of seizures
they're having and best described on a First Aid for Seizures Chart.
These are my favorites -- also from Epilepsy Idaho. One is
http://www.epilepsyidaho.org/seizure2.htm and that links to
http://www.epilepsyidaho.org/seizure.htm . One of those is easier to
print, although both display well for information or reference.

There is also a separate page for First Aid in Water.
What to do when someone is swimming is somewhat different that if they
were to collapse 'on land'.
/////////
Howdy Dave has a site he put together ~10? years ago and he regularly
updates. He was also one of the oldest :-< members of this group and
someone told me he was one of the Founders too.

His site is at http://www.howdydave.com .
//////////
The main U.S. Ep. Foundation website is at http://efa.org . This site
has a Medication Glossary, although I found my own pharmacist a
useful source of information if I had Side Effects or Questions about
a
particular prescribed pill.
// G./

2 From: howdydave
Date: Tues, Jan 31 2006 8:52 pm
Email: "howdydave" <>

Howdy!
Another good site is the BrainTalk Forums.
There's a LOT of good information there.

G./ The www address to this one was changed (by the company?) to the
address listed further down these mails. /

3 From: guitarmom
Date: Wed, Feb 1 2006 8:00 am
Email: "guitarmom" <>
Groups: alt.support.epilepsy

Great sites! Thanks G for adding them. I find so much information on
Emedicine to help understand seizures as well as the syndromes, EEG,
and variants. it is based on articles that neurologists have written
and peers have edited and reviewed. There is a place for definitions
as well -->
http://www.emedicine.com/neuro/topic415.htm You can do a
search there for all things epilepsy or neurology as well.

http://www.neuropat.dote.hu/epilepsy.htm Internet handbook for
neurology has a great number of quality sites as well. this is
compiled by a neuro in Hungary.
Ginny

4 From: howdydave
Date: Wed, Feb 1 2006 11:41 pm
Email: "howdydave" <>
Groups: alt.support.epilepsy

Let's not forget:
Strathearn Neurological Access Point
aka: SNAP
http://www.sol.co.uk/k/keir/snap1.htm

Set up by Dave Ferguson (the REAL founder of this group) in Scotland.

5 From: Rocking4Epilepsy
Date: Wed, Feb 8 2006 12:01 pm

You also may find all your first aid and safety precautions on our
site below    http://dannyjr.proboards44.com/index.cgi

*** Note-- above site you would have to Register and set up
information to access the links.  I haven't done that, but poster has
posted semi-regularly to here over last year or more.

6 From: polaris
Date: Thurs, Feb 2 2006 2:54 pm
Email: polaris <>

BrainTalk looks very good. (listed above at #2 )
Thanks for the suggestion.

7 From: guitarmom
Date: Thurs, Feb 9 2006 8:37 am
Email: "guitarmom" <>

Another great site that I have found is
http://www.epilepsy.ca/eng/mainSet.html

if you go to the opening page where it has English or French it does
have a flickering candle. This page does not have it.
There is a great deal of information here, well done and easy to
maneuver.
Basic facts, myth busters, info for children, teens and adults,
research, safety, coping!
Hope this helps someone.
Gin

From: "howdydave" <>
Date: 23 Nov 2006 08:56:34 -0800
The BrainTalk server crashed a while ago and
it is at a new URL these days

BrainTalk - Epilepsy
http://brain.hastypastry.net/forums/forumdisplay.php?f=144

Since this is a new server, old participants need to re-register
the first time they want to post to the NEW BrainTalk.

BTW: Lots of other forums on BrainTalk too... see:
BrainTalk Communities
http://brain.hastypastry.net/forums/index.php
Dave

Newsgroups: alt.support.epilepsy
From: WaderFam
Local: Wed, Jan 17 2007 11:19 pm
Subject: Re: Websites of use to newer people

Wanted to also add this site. My daughter in law runs it.
Wanted to invite you to our forum on epilepsy. Including safety
precautions and SUDEP. We have almost 500 members and over 20 forums
for members. Its free and easy to join hope to see you
http://dannyjr.proboards44.com/index.cgi

/// End of messages I collated.  G./ //
Sofia - 22 Jun 2007 23:53 GMT
> on Sudep (Sudden unexplained death from epilepsy).
> That group you have to Register and set up an ID.? to be able to
> access or post there.  I didn't go look at what else was involved.
> G./  -->

Oh, I don't need to be told what SUDEP is, I've known about it for 2-3
years now - it's just a little worrying *HOW* it just seems to happen,
you know, just like that!

It's  also mentioned in my book, but not on the causes section, just as
a very rare but fatal after effect of epilepsy that doctors don't seem
to know that much about. I don't know if they may know a little more
now though as my book was dated the year 2003.

Sofie
Signature

Please visit my deviantART page: http://sofen.deviantart.com/

G. - 23 Jun 2007 03:11 GMT
> > on Sudep (Sudden unexplained death from epilepsy).
> > That group you have to Register and set up an ID.? to be able to
[quoted text clipped - 12 lines]
> --
> Please visit my deviantART page:http://sofen.deviantart.com/

A talk I saw at the Toronto Ep. Convention in ~2004, the Dr. doing
the presentation suggested one possible cause might be someone having
a 'Brain Fibrillation', often while they were asleep, where the Brain
sends rapid, confused electrical signals to the Heart (and possibly
Lungs), disrupting the normal functioning of absorbing oxygen and
passing it into the bloodstream.
 SInce most of the cases she had studied it happened to people who
had been diagnosed for several years and they weren't in a hospital or
connected to monitoring equipment when it had happened, they hadn't
been able to actually have readings pre-seizure to tell how the onset
had developed.   They were only able to try reconstruct what *might
have happened after the event, and after the particular people had
died.   (That was where the term about Sudden Unexplained Death from
Epilepsy (SUDEP), had been suggested.)   Basically, the point they
were at was that the Trigger and Source of the seizure wasn't known,
and they didn't know why it didn't e.g. Generalize and stop before the
person expired.  She sort of wondered out loud, during the talk,
whether there had been some *other physical complications that had
developed and hadn't been detected with earlier tests, which triggered
the particular complication.
  That's why I've suggested a few times (when I mention SUDEP) that
the causes were unknown but that they appeared (still) to be *rare in
their frequency, among those of us who've been diagnosed with
seizures.
 The proportion of the total population of those of us 'diagnosed'
with seizures, appeared to be small (under 5% to less), and that
contributed to them not having been able to find a reason or pattern
that would suggest why it happened at all.     G./

Rate this thread:






 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.