Coping With Epilepsy Neurofeedback Scotland
10% off neurofeedback training for CWE members - Glengarnock, North Ayrshire, Scotland
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen


Reply
 
LinkBack Thread Tools
  #1  
Old 04-11-2010, 09:15 AM
PhylisFeinerJohnson's Avatar
CWE Benefactor
 
Join Date: Sep 2009
Location: West Chester, Pennsylvania
Posts: 870
Thanks: 69
Thanked 243 Times in 154 Posts

What inspired you to join this forum?


Was it because of your epilepsy?
Was it through the advice of a doctor, friend or loved one?
Were you googling "support groups" or forums for epilepsy?
Or were you trying to help another person with a disability?
__________________
www.epilepsytalk.com
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
The Following User Says Thank You to PhylisFeinerJohnson For This Useful Post:
seizingbeauty (04-15-2010)
  #2  
Old 04-11-2010, 09:24 AM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 7,590
Thanks: 206
Thanked 1,914 Times in 1,639 Posts
I can't quite remember the details, but I think I was searching for information about alternative treatments for [my] epilepsy. Particularly vitamins, neurofeedback, etc. I came to the dinner party planning to hang out by the punch bowl and snarf the hors d'oeuvres, but stayed because of the wonderful guests.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #3  
Old 04-11-2010, 09:26 AM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,287
Thanks: 753
Thanked 1,049 Times in 853 Posts
Send a message via AIM to Endless
I had received a diagnosis of epilepsy about a month before joining the forum. No one I knew had epilepsy, and I had never heard of Temporal Lobe Epilepsy. I just knew I had all these weird symptoms - a couple of pages worth of them. It was a complete shock to me to be told it was temporal lobe epilepsy.

After my diagnosis my doctor gave me a list of links and suggested I do some reading. The online medical websites just weren't giving me the information I needed, and neither was my doctor. After all, I only have 20 minute appointments with him. It felt like I needed 24 hour appointments. I was confused, scared, and didn't know what to do next.

I did a search on "epilepsy support" and this was one of the results. I was on Keppra back then and my brain was pretty fried, and this was the only forum I could figure out how to use. Thanks to Bernard for keeping it easier to use than the rest! At first I stayed just with this forum because I still couldn't figure out how to use the other sites (and still can't). Now I stay because of the "easiy factor" and the rich information, but most of all the relationships built with everyone on here. It feels like family. So here I am!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #4  
Old 04-11-2010, 02:23 PM
Birdbomb's Avatar
Super Moderator / VNS Guru
 
Join Date: Apr 2005
Location: Las Vegas, Baby!
Posts: 2,383
Thanks: 133
Thanked 190 Times in 108 Posts
Originally Posted by PhylisFeinerJohnson View Post:
Was it because of your epilepsy?
Was it through the advice of a doctor, friend or loved one?
Were you googling "support groups" or forums for epilepsy?
Or were you trying to help another person with a disability?

I have been here so long, I am part of the furniture. If I recall correctly, Bernard came to my site and said he had created a site seeking alternative treatments of epilepsy for his wife Stacy. He invited me to join and at that time CWE was so new even the bots hadn't found it yet. Since that time we have both been very supportive of each others sites.

CWE is the BEST support site for epilepsy on the internet.
__________________




"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #5  
Old 04-11-2010, 09:04 PM
Rae1889's Avatar
Venerable Voice of CWE
Recent Blog: Update

 
Join Date: Sep 2009
Location: Winnipeg, Manitoba, Canada (a.k.a The Land Of Endless Snow!)
Posts: 2,488
Thanks: 592
Thanked 339 Times in 250 Posts
Send a message via MSN to Rae1889 Send a message via Yahoo to Rae1889 Send a message via Skype™ to Rae1889
I went poking my nose around finding information about seizures I had been having and came across a video done be Joan's daughter Jenn. That prompted me to go see the doctor and the cycle started.

Then I stumbled upon this site after seeing another link to Jenn's video on here and joined. Then I found out her mother was on here and its been a great source of information ever since. Support and comfort and friendship have been built here.

Ps, Nak, I love your version!
__________________
FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #6  
Old 04-11-2010, 11:32 PM
RanMan's Avatar
Too Much Experience with Epilepsy
 
Join Date: May 2005
Location: Hamilton, Ontario
Posts: 300
Thanks: 7
Thanked 25 Times in 12 Posts
I was a member of several other epilepsy sites and one of the forum moderators (Jenn) suggested that I check out CWE so now I've been a member since 2005.
I've made several friends here and learned a lot of info. and I can also share some of my experiences with this great group of ppl.

Randy
__________________
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #7  
Old 04-11-2010, 11:57 PM
carlos.fonke's Avatar
Joined the Party
 
Join Date: Mar 2010
Location: USA
Posts: 69
Thanks: 35
Thanked 12 Times in 11 Posts
I have to go with the furniture/wallpaper explanation, too - at least in a small corner of the room. Several years ago I was a member here, lost my info, entered a Dilantin memory hole, and stumbled my way back recently.

It's bizarre to read an old thread and realize the poster is me in my old and forgotten screen name.

One hundred percent agreed that this is the best E support site - with the best folks - on any of the internets. A certain other unnamed site is still "reviewing" my registration to their forums more than a month later. I have news for them!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #8  
Old 04-12-2010, 12:46 AM
nightfighter's Avatar
Getting Comfortable
 
Join Date: Dec 2009
Posts: 22
Thanks: 1
Thanked 2 Times in 2 Posts
My wonderful partener was looking for support group to try and help me with what I was going through.She sure did a good job.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #9  
Old 04-12-2010, 09:03 AM
Zoofemme's Avatar
Esteemed Pillar of the Community
 
Join Date: Mar 2010
Location: Greenville, OH
Posts: 502
Thanks: 86
Thanked 105 Times in 95 Posts
I needed to find a support group...i googled E forums and CWE is one of the first ones to pop up so here I am
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #10  
Old 04-12-2010, 09:08 AM
Chris515's Avatar
CWE Supporter
 
Join Date: Feb 2009
Location: Winnipeg, Manitoba, Canada
Posts: 419
Thanks: 32
Thanked 105 Times in 45 Posts
For me, I didn't know anyone who had epilepsy. I was on my own and didn't have anyone who understood what I was going though. So I searched on how to cope with epilepsy, and I found this wonderful place!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #11  
Old 04-12-2010, 09:19 AM
occb's Avatar
Venerable Voice of CWE
 
Join Date: Aug 2009
Location: Canada
Posts: 1,190
Thanks: 77
Thanked 155 Times in 136 Posts
I'm nightfighter's partner. I initially came to find out if what he experienced all his life were seizures, and people kindly answered my questions and encouraged me to hang around. So I did.
__________________
An expert is a man who tells you a simple thing in a confused way in such a fashion as to make you think the confusion is your own fault. ~William Castle
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #12  
Old 04-12-2010, 11:57 AM
Loopy Lou's Avatar
Venerable Voice of CWE
 
Join Date: Apr 2009
Location: Ballymena N.Ireland/Blackpool England
Posts: 1,700
Thanks: 150
Thanked 133 Times in 118 Posts
I hadn't quite been diagnosed, and was looking around the internet for advice on how things would be done, tests, how other people cope.

Curiosity got me here, and i was just so glad that there was so many to talk to, that i stuck around.
__________________
Gach óir is é sin nach glitter...
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #13  
Old 04-12-2010, 12:49 PM
dfwtexas's Avatar
Esteemed Pillar of the Community
 
Join Date: Jun 2008
Location: Rowlett, Texas
Posts: 981
Thanks: 34
Thanked 57 Times in 54 Posts
When doctor first told me that I had epilepsy, I just knew he didn't know what he was talking about! LOL I did searches and most of them brought me to this forum. I also posted on a couple of other forums...but this was the only one where people were helpful and supportive. I have met a few others with E and always tell them about this site!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #14  
Old 04-12-2010, 01:18 PM
CathyAnn31's Avatar
Weaving the Community Fabric
 
Join Date: Sep 2009
Location: Texas
Posts: 425
Thanks: 68
Thanked 56 Times in 49 Posts
After the big seizure my kids witnessed I had to find out more info about epilepsy. I hadn't even seen a neurologist yet. I googled and came across several epilepsy sites and looked around. Wasn't impressed and I kept looking until I found this place. Everyone was so warm and welcoming and no one talked down to anyone. I decided to hang my hat.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #15  
Old 04-14-2010, 12:43 PM
TeeTees's Avatar
Esteemed Pillar of the Community
 
Join Date: Oct 2007
Location: UK
Posts: 919
Thanks: 3
Thanked 4 Times in 4 Posts
Well, I'd already had seizures for yeeeears, so wasn't REALLY seeking advice.

I guess I just felt I needed to be reassured that I wasn't the only person in the world with our problems, and stumbled upon this site, at first.

Since then, I've learnt so much more about seizure's, making me realise that I'm quite lucky with the ones I have, compared to other people that is, and the knowledge is just ongoing - sometimes bypassing any information my Doc seems to be able to supply me with.....sometimes it feels better too talking to others who 'understand' your problems as well.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #16  
Old 04-14-2010, 12:49 PM
RobinN's Avatar
Super Moderator / Super Mom
 
Join Date: Aug 2007
Location: SoCA
Posts: 7,643
Thanks: 86
Thanked 504 Times in 403 Posts
Send a message via Yahoo to RobinN
I appreciated being able to discuss and research alternative approaches to this disorder.
Sharing this information with an open mind, has been life saving for my daughter and myself.
I thank you all, and especially Bernard, who has created this environment to do so.
__________________
Robin
Neurofeedback - Rebecca's Story
Feedback Matters- blog
Knowledge is power and knowledge shared is power multiplied.
-- Bob Noyce
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #17  
Old 04-14-2010, 01:36 PM
Cint's Avatar
CWE Supporter
 
Join Date: May 2008
Location: Littleton, CO
Posts: 1,802
Thanks: 162
Thanked 489 Times in 366 Posts
For me, it was through the epilepsyfoundation.org website that I saw Bernard's invitation and out of curiosity, I decided to come and visit. What kept me coming back was the openness and the "Creative Writing" page. Thanks, Bernard and Laurie!
__________________
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #18  
Old 04-14-2010, 07:53 PM
Blondie47's Avatar
Weaving the Community Fabric
 
Join Date: May 2009
Location: New York
Posts: 148
Thanks: 48
Thanked 17 Times in 17 Posts
Well I was poking around -- looking for information and found CWE!!!!

Thank goodness it has been a lifesaver during this journey
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #19  
Old 04-14-2010, 07:58 PM
C0urt's Avatar
Esteemed Pillar of the Community
 
Join Date: Oct 2009
Location: Birmingham, Alabama,
Posts: 882
Thanks: 52
Thanked 145 Times in 96 Posts
Send a message via AIM to C0urt Send a message via Yahoo to C0urt
I got banned from one of the other epilepsy forums for language while I was depressed.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #20  
Old 04-14-2010, 08:54 PM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,287
Thanks: 753
Thanked 1,049 Times in 853 Posts
Send a message via AIM to Endless
Well what the %^$#&, court. Make yourself at $#(*&ing home here. Just remember to use those special character keys.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
Reply

Tags
advice, epilepsy, forums, support groups

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Join Dogtor J on Facebook RobinN The Kitchen 0 05-20-2009 08:55 PM
All New and Hot - Everyone can join and have fun! brain The Lounge 6 11-23-2008 03:56 AM
Hello. I'm Cetacean. Glad to join you! Cetacean The Foyer 14 07-22-2008 12:06 PM
Anyone in Napa Ca area? Please join me! rayofhope The Kitchen 8 03-20-2008 05:10 PM


All times are GMT -5. The time now is 10:39 PM.


Powered by vBulletin® - Copyright ©2000 - 2012, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.