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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wasn't swearing.
I called myself a freak, and they got offended. They take a really soft handed approach of accepting you have epilepsy. I was still depressed about it, and trying to accept it the best I could, which was essitinially stating I was different.
 
I try to understand from your experiences what my boy feels/goes through when he's having seizures, all types of them, and before + after them. My special needs kid can't tell me so I have to learn from other people with E. I'm moderator of a Dutch support group for parents only. Most of our kids are handicapped and can't speak.
 
I located this off a link of a medical forum. The emotional support and vast information is awesome in here. It has helped me make some lifestyle changes as well.
 
I like google and it seemed no matter what I searched for, this site was pinged in some fashion, so I started browsing. I only made my first post a couple days ago and I'm still "testing the water" so to speak, but I think I might hang out a while...
 
I was going through a rough patch with my E and went looking for something to help. Tried a group here in MTL, but I just wasn't comfy. Stumbled onto CWE, felt cozy from the get go, so decided to stick around. I tried some other boards to help deal with some of the different issues in my world but never felt as welcome or secure as I do here. This is the only place I "hang out"!
 
Oh, and one other very good reason :

I joined one off the UK sites, and all they seem to be interested in is competing with 'how bad THEIR sz was' compared to the one you wanna have a moan about.

On this site you actually do get compassion and understanding from others....you rock CWE :rock:
 
Joined because i was sick of being alone with E. Needed to talk to people with my problems and help others who wouldn't say "Oh...." when i declared that i had epilepsy. was actually inspired by an article on the revolution at gallaudet university where deaf people staged a protest for a Deaf president. Epilepsy has been both a blessing and a curse. in some ways i don;t know what i'd do if someone found a cure tommorrow. It's been a part of me for the last 14 years and i've found friendship , love and family in people who accepted me for who i am. I feel an inherent kinship with people with epilepsy , and in a way we are a community by ourselves. We may not speak a different language or worship a different god , but we stick out and stick together. This forum embodies that - pretty much why i signed up.
 
AW! Drarvindr! that is so touching and so true!

I'd like to be able to get into medical fields. Either neurology *if I can figure out a way to afford it* orthopedic cast technician. or an Optician. I like dealing with public but I want to help as opposed to selll
 
The shared experience

i've had E for over 34 years and I have never had anyone who could relate to what I was going through. This board and its community are an important part of my E treatment regime not only for the resources here, but because shared experiences give me strength and hope to deal with E.

:rock:
 
Hello all~! Feel like we could be a part of a BIG family.

I came here because the site I used to be on for E was not only loading sooo slowly.. only a few folks were left when my husband had E and I needed support and information.

Oddly, I was just diagnosed with E 02/10 (which I had to accept) and MS all in the same breath. I am struggling with accepting MS as I was told I did, then didn't have it in the past.

This is the MOST prompt responding and helpful forum. The MS forum noderators have to approve your post before you can see it on the forum. They delay can be crucial when you need a quick response.

Thanks for being so kind and well.. humane

Warmly, JAN
 
As many have said, when you are told you have "E", sometimes your doc doesn't really explain it too well. The neuro I was 'assigned' to by the ER doctor after my tonic-clonic just showed me the squiggly lines from my EEG and said, "That's abnormal electrical activity." I'm the one who had to say, "Are you telling me I have Epilepsy?"

He said yes, here are some prescriptions.

Okydokey. So I did some searches on the internet and found you guys!

Sheesh. These doctors!
 
Sounds like you could use a new doc who's at least humane and listens to you. Try to keep a daily diary of seizures, triggers, activities and emotions. This could help your new doc understand what you're doing.

And here's a list of docs in North Carolina, based on positive personal experiences of members from the EFA eforum:

Dr. John DeToledo, Wake Forest Medical Center, NC
Dr. Laura Jozewicz, Raleigh, NC
Dr. James Parrott, Neuroscience and Spine Institute, Charlotte, NC
Dr. Sheila Smalls, Forest City, NC

Good luck...
 
Yes I can agree with you there Phylis that there are some great doctors in North Carolina. I am a patient with Wake Forest and have been since 2008. They took me with open arms and no insurance and have given me nothing but the best in service. I live in Atlanta and travel back and forth to them but it is worth it. Sorry now to the topic at hand (I get carried away but I love to give credit where it is due and they literally saved my life and have continued to care for me) but I was previously on a different site and I just didn't feel much warmth. The members had slowed down posting so activity was minimal at best but not here its thriving and everyone has been nothing but kind. I am new here but I know a good thing when I have found one.
 
genius said:
Yes I can agree with you there Phylis that there are some great doctors in North Carolina. I am a patient with Wake Forest and have been since 2008. They took me with open arms and no insurance and have given me nothing but the best in service. I live in Atlanta and travel back and forth to them but it is worth it. Sorry now to the topic at hand (I get carried away but I love to give credit where it is due and they literally saved my life and have continued to care for me) but I was previously on a different site and I just didn't feel much warmth. The members had slowed down posting so activity was minimal at best but not here its thriving and everyone has been nothing but kind. I am new here but I know a good thing when I have found one.
Click to expand...

welcome, and howdy. :banana:
 
Hi, Genius, Welcome! Glad you are here!

Yes, it is a fairly active forum. And the way it's set up makes it more like a community where people get to know each other and support each other. I am happy you found us.

:)
 
I had tried other forums, but people didn't really concregate on them. So none of them really worked for me.
I was really struggling, so I searched for another one and came here. I have mentioned it to my neurologist to bring it up to others. You all have helped me SO much! I really don't feel like I'm odd anymore, it's so nice meet with the same.
Thank you all so much! :clap:
 
I joined a long time before I was diagnosed. I suspected I was having nocturnal seizures and joined to learn more about E, which I did. I was finally diagnosed in June and that's when I started getting involved here. I agree with everyone -- this is a comfortable place to learn, to ask questions, to have fun, and much more.
 
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