Coping With Epilepsy Matthew's Friends
Free Advertisement
 

Go Back   Epilepsy Forum > Our House > Back Fence



Reply
 
LinkBack Thread Tools
  #1  
Old 05-29-2010, 01:44 AM
Crystal11's Avatar
Esteemed Pillar of the Community
 
Join Date: Jan 2009
Location: Austin, TX
Posts: 712
Thanks: 23
Thanked 70 Times in 61 Posts

Unhappy Regular and XR medications


Hello everyone.
I wanted to ask you all something about medications for Epilepsy only.
I used to take Tegretol XR and did notice that I had more trouble keeping good seizure control (missing two dose could cause a seizure.)
I now take Keppra XR but used to have troubles with Keppra but I could be a missed dose or doses that would cause trouble.
Lamictal isn't XR and I can feel when it is out of my system but I don't know if it would make sense to a neurologist or not hehe.
When I went to the ER for two seizures close together- the ER told me that I am one of those patients that are most prone to having seizures when I miss meds even if its one full day (when Im real busy or traveling without paying attention etc)
ER doctor said I have to be careful and make sure I take meds correctly. My neurologist would get mad (which is totally normal) when I reduce my meds when I feel better.

Anyway- do you guys feel that XR lessens the "meds have run out of my system feeling" or do you feel it doesn't cause a change in feeling or sensation at all?

Take care everyone
Crystal
Reply With Quote
The Following User Says Thank You to Crystal11 For This Useful Post:
Endless (05-29-2010)
  #2  
Old 05-29-2010, 06:37 PM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,466
Thanks: 821
Thanked 1,234 Times in 954 Posts
Send a message via AIM to Endless
Crystal,

Thanks for posting this. I was thinking of asking my doctor about the XR version of Trileptal, because 2-3 hours before my dose I start getting an aura, and it doesn't go away until about an hour after I've taken my dose. Since I take my Trileptal every 8 hours that means half the time I'm living with an aura on and off, which stinks big time.

But, if the XR version could have less seizure control, it doesn't sound like a good solution either. Maybe would be worth a try anyway to see what happens.

I was on 1200 trileptal, and backed down to 900 because of adverse reactions. 900 isn't working for me. This is my 4th drug, all the rest abandoned because of adverse reactions including rashes. I'm feeling really stubborn about sticking with the Trileptal because I don't think it'll be better on anything else.

Anybody else out there had adverse reactions including rashes on 4 drugs, adn found one later they could tolerate? If nothing was tolerable at theraputic doses, what did you do? And how about the XR effect that Crystal mentioned?????
Reply With Quote
  #3  
Old 05-30-2010, 10:53 AM
Crystal11's Avatar
Esteemed Pillar of the Community
 
Join Date: Jan 2009
Location: Austin, TX
Posts: 712
Thanks: 23
Thanked 70 Times in 61 Posts
ENDLESS- the XR that I talked about would give you better seizure control because the medication level never changes. The non-XR meds can go up and down in level in your blood if you miss a dose once or twice in the day. Most people don't have a problem if they forget a dose or two but for me, I tend to be more sensitive to it.
Anyway- the XR versions of anything will keep a steady level in your system. It takes longer to start up and longer to get off of it- but its not like weeks or anything hehe.
I wish you well.
Oh, when I talked to my neurologist, he said that because I was on or have tried more than 4 meds, that I might be a condidate for surgery. He asked if I wanted to go through with the testing for it. That would be an video EEG, WADA, MRI/CT, and brain mapping which is just too much for me and I've had 9 surgeries in my life and don't want anymore LOL

Take care,
Crystal
Reply With Quote
  #4  
Old 05-30-2010, 05:15 PM
Endless's Avatar
Super Moderator / Even Keel
 
Join Date: Feb 2010
Location: U.S.
Posts: 4,466
Thanks: 821
Thanked 1,234 Times in 954 Posts
Send a message via AIM to Endless
Wow. I don't blame you about the surgery. You've had enough.

Me, never had brain surgery, don't want it, won't do it.

I take my meds right on time, and I'm still getting an aura for a couple of hours before the next dose.

Everything was under control at a higher dose, but like I think I've said before, my body couldn't tolerate the higher dose. I have no idea what my doc is going to do. I don't think I'm going to tell him yet and give it a little more time. I want to try taurine and see if it makes a difference.
Reply With Quote
  #5  
Old 05-31-2010, 01:21 AM
Crystal11's Avatar
Esteemed Pillar of the Community
 
Join Date: Jan 2009
Location: Austin, TX
Posts: 712
Thanks: 23
Thanked 70 Times in 61 Posts
You can go ahead and tell neurologist about you wishing to let and give it more time before increasing or decreasing your meds. You have the right to make suggestions and to ask questions. You are paying the neurologist to help you, evaluate and treat you.
Sometimes these questions or suggestions help things along faster.

Take care,
Crystal
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Medications=Sentences Cinnabar Brain's Games 52 03-20-2012 09:20 AM
regular users please help leeann0483 The Foyer 3 11-07-2008 11:01 AM
medications cbmc The Kitchen 3 10-08-2008 06:10 PM
University Hospital or Regular Hospitals? vtsammy The Kitchen 15 06-20-2008 01:18 AM
medications kittykat2009 The Library 30 01-16-2008 01:17 PM


All times are GMT -5. The time now is 12:33 AM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.