What inspired you to join this forum?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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PhylisFeinerJohnson

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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 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.
 
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 TLE.

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!
 
PhylisFeinerJohnson said:
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?
Click to expand...

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.
 
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!
 
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
 
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!
 
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.
 
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 :)
 
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!
 
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.
 
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.
 
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!
 
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.
 
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 sz'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.
 
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.
 
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!
 
Well I was poking around -- looking for information and found CWE!!!!

Thank goodness it has been a lifesaver during this journey:woot:
 
I got banned from one of the other epilepsy forums for language while I was depressed.
 
Well what the %^$#&, court. Make yourself at $#(*&ing home here. Just remember to use those special character keys. ;)
 
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