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Epilepsy Support Groups

 

What the hell just happened?  One minute you're sitting on the couch, trying to watch TV when your spouse / partner / significant other / parents / children / siblings / roommate / whomever starts in on a big, emotional and very stressful "discussion" (read one-way argument) with you.  Then the TV sounds different.  And things start to look weird.  And the whole world has passed through the looking glass.  Maybe one limb starts shaking.  Maybe they all start shaking at once and you're flopping around, biting your tongue and pissing your pants.  Or maybe you say something and repeat it over and over and over and over and over for a minute.  Or two.  Or five.  Or maybe you get up and walk around in circles while repeating how you're garbage, garbage, garbage.  Or maybe you start hitting the wall with your fist again and again until you punch a hole through it.  Or maybe your muscles forget they have a skeleton to support and you become the human turd on the carpet.  And when it's all over you're disoriented, words don't come out right, if at all.  You feel hung-over in a way.

That's life in Epilepsyland.  It's extremely weird.  And people who don't live there have a really hard time understanding it.

But you're not alone.

 

 

 

Epilepsy.com Forum - Hey, someplace that has some quality information being exchanged about life with epilepsy and the meds involved.

 

Epilepsy Foundation eCommunities - Dealing with various epilepsy-related subjects such as holding down a job, stigma, relationships, age and gender specific issues.  Probably the only place where you'll find a large, frank and open discussion of SUDEP.

 

There are a few epilepsy communities / users over at Live Journal.  Mental Interference, Being Homeless and scheherazade in blue jeans are some of the notable ones.

 

tribe.net has two epilepsy groups.  Epileptics Unite! is the "main" group, dealing with the more "typical" aspects of epilepsy.  surreality is the smaller group and deals with things like the waking dreams, SUDEP and the general weirdness that is being epileptic.  If you're part of a tribe, you know the deal.

 

 

The Open Directory Guide to Epilepsy Support Groups - Most of these are Yahoo groups, and I have not been too impressed by the signal-to-noise ratio on the Yahoo groups I've read.  In other words, lots of bullshit, rumor and hysteria while very little factual information tends gets spread around.

 

Really folks, if you don't like the above fora your best bet is to cruise all of the sites that offer A Little Bit of Everything.  You'll find many of the listing in the above open directory guide that aren't Yahoo groups are just boards on said sites.

 

 

 

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Epilepsy in the News

Support Groups in the News

 

If you know of any good Epilepsy support groups / fora / chat rooms where you don't have to register just to take a look (but I'm fine with guests not being able to post or otherwise participate, just being able to look around is my only criterion), send me an e-mail to jerod23 at gmail dot com and I'll check them out.  Even if you're starting your own let me know.  There's no guarantee I'll list it, but you never know.  English language is not a requirement. 

The Overlords of the 12 Zernox Galaxies have compelled me through messages in the Sunday Chronicle to beg you for spare change.  So if this site has been of use and/or amusement to you, please see if you could

or visit the Donation Page if PayPal isn't your style, or our Mental Mall to make a purchase.  I'm all about fiscal transparency, so follow the money for full disclosure of my pitiful finances.

 

 

 

 

Hey, did you find this page all by itself through Google or some other search engine? Great! But to really appreciate the entire site, you need to start here.

 

 

 

Take care of yourself, and keep taking your crazy meds!

 

If you still have unanswered questions about this or other medications, including which one is, or combination of meds are the best for you, your best bet is to ask on Crazy Meds Talk.  Better yet, if you want to let the world know how they worked out for you and want to help out others in their quest for the correct meds, join the party.
If you  want to discuss your issues, I suggest checking out one of the various support groups online.  
Otherwise, if you're letting me know about how much you like or hate the site, or  need to let me know about medication effects in private, then just drop a note to jerod23 at gmail dot com  Honestly, I usually don't have a lot of time to answer e-mail these days.  The snide autoresponse message that may or may not hit your mailbox is going to tell you the same thing.
Another problem is that you may not get a response even if I wanted to send you one.  You see, so many dickweeds with malicious intents and too much time on their hands have appropriated the crazymeds.org domain name to use for their spam, viruses and the like.  Subsequently some lazy-ass e-mail protection software authors just go by the domain name, and not the IP address.  So I've been blacklisted because of the actions of others.  Or the software just doesn't like the domain name because of the "crazy" and/or "meds."  Or your question about a particular medication will set off spam flags.  So the e-mail just wouldn't go through regardless.  Sorry.

 

 

Created Tuesday, November 30, 2004

Last updated Saturday, May 15, 2010

 

Copyright © 2003 - 2006 Jerod Poore. All rights reserved.

 

Almost all of the material on this site is copyright © 2002, 2003, 2004, 2005 and 2006 Jerod Poore. Except, of course, the PI sheets, those are the property of the drug companies who developed the drugs the sheets are about.  And any documents that are written by other people which may be posted to this site will remain the property of the original authors.  You cannot reproduce this page or any other material on this site outside of the boundaries of fair use copying without the express permission of the copyright holder.  That's usually me, so just ask first.  That means if want to print out a few pages to take to your doctor, therapist, counselor, support group, non-understanding family members or something like that - then that's OK to just do.  Go for it!  Please.  As long as you include this copyright notice and the following disclaimer, I'm cool with it.

All rights reserved. No warranty is expressed or implied in this information. Consult one or more doctors and pharmacists before taking, or changing how you take any neurological and/or psychiatric medication. Your mileage may vary. What happened to us won't necessarily happen to you. Nobody on this site is a doctor, therapist, or a pharmacist. We don't portray them either here or on TV. Only doctors can diagnose and treat an illness. Some doctors tend to get pissed off by patients who know too much about medications, so tread lightly when and where appropriate. Diagnosing yourself from a website is like defending yourself in court, you suddenly have a fool for a doctor. Don't be a cyberchondriac, thinking you have every disease you see a website about, or that you'll get every side effect from every medication. Self-prescribing is just as dangerous.  All information on this site has been obtained through personal experience, the experiences of my friends, the experiences of people reported on online support groups, and from sources that are referenced throughout the site.  Know your sources!  As such the information presented here is not a substitute for real medical advice from your real doctor, just a compliment to it.  No neurologists, psychiatrists, therapists or pharmacists were harmed in the production of this website. All brand names of the drugs listed in this site are the trademarks of the companies listed after them in the pages about the drugs, even though those companies may or may not have been acquired by other companies who may or may not be listed in this site by the time you read this. Always read the PI sheet that comes with your medications and never ever throw them away.  If you didn't get a PI sheet, demand one.  Loudly.  Crazy Meds is not responsible for the content of sites we provide links to.  We like them, or they're paid advertisements, or they're something you should read to make an informed decision about a particular med.  Sometimes they're more than one of those things.  But what's on those sites is their business, not ours.  Very little information about visitors to this site is collected or saved. And from time to time I do look at search terms used to find it in an effort to make the information I present more relevant. Use only as directed. Void where prohibited.

 

"Everything is true, nothing is permitted." - Jerod Poore