Hello Shaky,

Welcome to the neighborhood. :) My daughter was on TegrestolXR W/ Keppra, till Oct/Nov? last yr. She is now on Topamax & has been seizure-free since. Hope the same holds true for you.

How long have you been doing Topamax 'solo'?

Love Candi

Hi:
I want to tell you you will be happy you found this site and the people are great here. Just feel free to drop a note if you want to ask anything or just want to say hi.
Bob

Candi,
I dropped the Keppra about a month ago. I'm a "bad" patient, lol, and always trying to mess with my meds..but in this case it worked.

Bob,
Thanks! Always good to talk to others who are there. So hi.

Just got another dx of essential tremor, so have so much on my mind lately. Thanks you two. :)

Stacie

I am on keppra I take it at night and lamictal in the morning. I am new here as well because I just had another recent seizure.

Hello Shaky,

OK, this may sound Rude, but, it ain't. It is Genuine Concern mixed w/ an Old woman's Vast knowledge of Epilepsy.

You can be a 'bad' girl all you want. But, Not when it comes to your meds. You hear me? If you mess w/ your meds, upping, downing, going Off them, you are placing yourself in Grave Danger of having a Status Seizure or worse yet, SUDEP episode. Do you know what those Terms Mean?

We want to hear More from You. Not Never hear from you again. :(
So, you got a wild idea to try messing w/ your meds again. DON'T! WAIT & talk to your DR. Please!

Love Candi

Candi

What is Status Seizure or worse yet, SUDEP episode. I don't know what they are can you please explain or point me to a website to read more? Thank You

Welcome New Girl....

Hello kads,

I will be very happy to send you info on both. First, remember John Travolta's son passing away? DRS determined SUDEP. SUDEP means Sudden Unexplained Death due to EPilepsy. :( There are lots of reasons for it & it is Rare. Or at least officials would like us to think it is. :( Drs usually won't bring it up when/if discussing Ep w/ us.

Here are 2 sites: 1 http://en.wikipedia.org/wiki/SUDEP
2. Recent Research News for possible prevention of SUDEP: http://epilepsytalk.com/2010/01/23/preventing-sudep/ If the link on that page doesn't work (medical news today link) let me know. :) The Most Important Advice I can give you on this matter: Be Proactive about your Epilepsy & Health care

Status Seizures are seizures that last (some controversy on time about this) 5-10-20minutes Non-stop. No Breaks in seizure activity. This is usually 'Rare, also. But, then again, we may be mislead by info available. :( The 'normal' seizure lasts 2-3 min. But, can start over again. And again. As long as there Are breaks between 'episodes' you are OK. Tips on How to Prevent Status Seizures

http://www.ehow.com/how_5660672_prevent-status-seizures.html

Keep doing your Homework! Keep Learning & definitely Become Your Own Advocate!

Love Candi

Hi Shaky,

I hate this rollercoaster ride of meds. I'm wondering how much Topamax you're taking and what type of seizures did you have? So glad to hear that you've been seizure free.

Best wishes, Linda

Hey shaky,
Welcome!! I'm glad you're joining us, and if I can do anything to help, let me know. Or Candi. She is better with this stuff than me. haha :)

I'm 'bad' too. i tend to not have seizures if i'm not taking all my meds. and Candi, don't yell at me pweese? ^.^

well anyways, welcome, and i'm sure it'll be nice to have a new face n the crowd.

Laura

Hi Laura,

I won't Yell! I promise! But, if this weren't cyberspace, well, I don't know. You have the facts! You know the danger. You Ain't invincible! So, don't do it again! Is that yelling? :) No, just a friendly 'reminder' that I Care!

Love Candi

lol i know you care candi. and i'm glad you do. buuut....my dr is stupid and wont listen to me about the fact that i cant take one of my meds....you know my situation with my neuro..

Well, you should be looking for another Neuro! Laura messing w/ your meds can cause serious problems. As I already said.

yes i know it can. and i'm looking.

Good for You! I noticed a Journal entry the other day from you. Something about giving up? What's Up? You can send me a message if you want. :)

Love Candi

Well, I'm not a bad girl, I did check with my neuro before I dropped the keppra. I'm not totally flaked out. With the Topamax, I'm on 200 am and 250 pm to answer the other question. I appreciate the caring :) I like my doc, he does listen to me. Been having some concerns about that med in fact with kidney stones, so may look into switching it at some point.