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Sites for Epilepsy and Seizure Disorders

 

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.  Maybe you're having a hard time understanding it.  Here are some places to learn more about the high weirdness that is a seizure disorder.

 

 

 

 

 

 

Epilepsy.com - Epilepsy 101 pure and simple.  If nobody gave you anything beyond the sort of pamphlet Dr. Hibbert hands to one of the Simpons after a medical problem, if that, you should start here.  There are better and more detailed sites I'm sure, but you have to start somewhere.

 

Epilepsy Foundation - 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.

 

The UK's National Society For Epilepsy's Guide to Epilepsy This fact-filled site is a wealth of information covering all the basics on diagnosis, treatments, day-to-day living, meds, common misconceptions, and dealing with dickweeds who are afraid of catching your brain cooties.  There's also a site for physicians and other researchers,  e-epilepsy  with lots of data about European anticonvulsants.  Put together by the UK's National Society for Epilepsy and sponsored by Sanofi-Synthelabo, this site is a treasure trove of hard data on anticonvulsants, especially anticonvulsants available only outside of the US.  Once I get back to researching anticonvulsants, I'll be living on this site. Bonnie (Mandakay on Crazy Talk) for pointing me to this incredible site.

 

Shake That Seizure "is a research and informative website for epileptics. The purpose of the site is to discuss and study a potential relationship between WEATHER and SEIZURES.

Does weather have an impact on seizures and epilepsy? Do temperature changes bring about increases or decreases in seizure activity? Do changes in the seasons affect epileptics? How about Barometric Pressure? What is Barometric Pressure? These questions and in the future answers will be on this website."  
Damned if I know if there is any correlation, but I can state that I feel much better when it rains or snows.  If you feel the same way (or the opposite), check out this site.  It wouldn't surprise me in the least if there's a connection.

 

You'll also have a lot of luck hitting the sites that cover a little of everything.

 

Open Directory for Epilepsy - There are plenty here, including government and university research sites.

 

See also our page of support groups for epilepsy.

 

 

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Epilepsy in the News

Support Groups in the News

 

Please, if you know of any sites with quality information about panic/anxiety spectrum disorders 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.  All I ask is that you don't have to register first to look at the site.

 

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

 

Jerod

 

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.

 

 

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.

 

 

 

 

Created Tuesday, January 18, 2005

Last updated Monday, September 26, 2011

 

Copyright © 2003 - 2010 Jerod Poore. All rights reserved.

 

Almost all of the material on this site is copyright © 2002, 2003, 2004, 2005, 2006, 2007, 2008, 2009 and 2010 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