Coping With Epilepsy Neurofeedback Scotland
10% off neurofeedback training for CWE members - Glengarnock, North Ayrshire, Scotland
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Our House > Back Fence


View Poll Results: How many different AEDs have you tried?
1 32 9.73%
2 47 14.29%
3 43 13.07%
4 42 12.77%
5 31 9.42%
6 24 7.29%
7 19 5.78%
8 21 6.38%
9 6 1.82%
More than nine 64 19.45%
Voters: 329. You may not vote on this poll

Reply
 
LinkBack Thread Tools
  #141  
Old 10-03-2011, 12:02 PM
Joined the Party
 
Join Date: Dec 2009
Location: Boise, Idaho
Posts: 31
Thanks: 2
Thanked 4 Times in 4 Posts
O my I don't know how many iceberg on
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #142  
Old 10-03-2011, 12:03 PM
Joined the Party
 
Join Date: Dec 2009
Location: Boise, Idaho
Posts: 31
Thanks: 2
Thanked 4 Times in 4 Posts
I've been on. Lol
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #143  
Old 10-10-2011, 11:14 AM
Blythe's Avatar
CWE Supporter
 
Join Date: Oct 2011
Location: Oregon
Posts: 29
Thanks: 13
Thanked 3 Times in 2 Posts

Just Three


I have been so fortunate to have been able to function with no side affects that I knew of accept for the slow degredation of my bones. I am 57 now and started anti seizure meds at 17. Yes I threw away the bottle at 20 but 22 I knew I needed to start dilantin again. Then at 37, Tegralol/carbamazapine. Always needed phenobarbitol too.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #144  
Old 10-12-2011, 06:48 AM
New Here
 
Join Date: Sep 2011
Posts: 8
Thanks: 5
Thanked 1 Time in 1 Post
Started on tegretol stopped the seizures but was destroying my liver, so was put on lamictal which i'm still on at the moment
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #145  
Old 10-12-2011, 04:23 PM
Loopy Lou's Avatar
Venerable Voice of CWE
 
Join Date: Apr 2009
Location: Ballymena N.Ireland/Blackpool England
Posts: 1,700
Thanks: 150
Thanked 133 Times in 118 Posts
Lamictal (hair fell out, dizzy, did nothing for seizures), Keppra (which I'm still on), Vimpat (made me an insomniac suicidal wreck), Tegretol (also on at the moment but not tolerating well at all).

So... yeah, four but possibly another one to add to that list soon.
__________________
Gach óir is é sin nach glitter...
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #146  
Old 10-13-2011, 07:33 AM
lureswinger's Avatar
Weaving the Community Fabric
 
Join Date: Feb 2010
Location: worksop nottinghamshire united kingdom
Posts: 270
Thanks: 2
Thanked 13 Times in 11 Posts
Send a message via MSN to lureswinger
Didn't need any tabs to help my hair fall out , getting run over by a transit van meant I wound up with 13 stitches in my head which meant they had to shave it off to get to injury but I just blame wife an kids for going bald wifes thumb print an kids just make it worse lol
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #147  
Old 01-17-2012, 09:27 AM
Belinda1961's Avatar
Joined the Party
 
Join Date: Jan 2012
Location: Atlanta,GA
Posts: 99
Thanks: 0
Thanked 39 Times in 21 Posts
I've taken 21 or 22 different drugs. I'm med resistant to a lot of drugs and also allergic to a lot of drugs.
If it's in the Tegretol family I can't take it unless it's the original Tegretol,Topamax is also one of the few drugs I can take

I'm finally coming off a drug Diamox and I'm more alert .
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #148  
Old 01-19-2012, 01:04 PM
New Here
 
Join Date: Jan 2012
Location: Nashville
Posts: 5
Thanks: 1
Thanked 1 Time in 1 Post
Dilantin- First drug prescribed. Made me rageful, weight gain, did a number on my teeth in a short time. Worked against my sizures for 2 years after continuously upping my dose.
Topomax- Exhausted, cranky, weight gain. Depression was so bad I quit taking it.
Tegretol- worked for about 4 years. weight gain was terrible.
Depakote- worst med ever. I gained weight, I lost my hair, I was bat-shit crazy.. really. I was very very violent.
Lamictal- loss of sex drive, no weight gain, didn't control my seizures at all.
Phenobarbital- you must be very careful with this drug. This biggest effect this had on me was it contributed to my alcoholism in a really really bad way. alcohol and pheno run off the same recedptors in your brain so I abused alcohol because it made me feel the way pheno did- like I wouldnt have a seizure.
Trileptal- i crave salty foods, i am very depressed

I have been on 9 but Lithium and lorazepam only for a very short period of time.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #149  
Old 02-17-2012, 02:45 PM
New Here
 
Join Date: Feb 2012
Location: Nebraska
Posts: 8
Thanks: 1
Thanked 2 Times in 1 Post
Was given Klonopin because I the episodes were misdiagnosed as anxiety attacks. I felt great for about 5 months then started crashing on drug. Had really bad seizures getting off that drug. Tried Depakote, seizures didn't stop. Ended up on Valium 3 times a day and lamictal. The Valium is currently being cut down and I have been taken of lamictal. I have been taking Keppra XR for about 5 months now.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #150  
Old 02-29-2012, 03:45 PM
Aaleayha's Avatar
Weaving the Community Fabric
 
Join Date: Feb 2012
Location: Summerville, South Carolina
Posts: 296
Thanks: 50
Thanked 37 Times in 33 Posts
Send a message via MSN to Aaleayha Send a message via Yahoo to Aaleayha Send a message via Skype™ to Aaleayha
I first tried Dilantin and went into shock and almost died. Took me off that. Tried Tegretol, Keppra, Depakote, [unknown name] , and now I have Lyrica. The one with the unknown name made me so sick that I couldn't walk, talk, be in any kind of light, hear anything and I was throwing up.... so I didn't stay on that for long.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #151  
Old 02-29-2012, 03:47 PM
Aaleayha's Avatar
Weaving the Community Fabric
 
Join Date: Feb 2012
Location: Summerville, South Carolina
Posts: 296
Thanks: 50
Thanked 37 Times in 33 Posts
Send a message via MSN to Aaleayha Send a message via Yahoo to Aaleayha Send a message via Skype™ to Aaleayha
And the Lyrica... i think I might be having some really bad problems with it... or It could be cutting my seizures down to just partial seizures.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #152  
Old 03-06-2012, 12:59 AM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Australia
Posts: 1,523
Thanks: 149
Thanked 138 Times in 104 Posts
Originally Posted by CQ:) View Post:
Five years ago when I was rediagnosed with epilepsy I was put on Tegretol.

Three years ago I was taking regular turns so the neurologist was going to gradualy take me of the Tegretol & put me on Lamictal. But while I was going of the Tegretol I had a grandmal seizure at my place of employment at the time. My neurologist ended up keeping me on both the Tegretol & Lamictal.

Last year I was taken of of the Lamictal & put on Topamax, I am now on Tegretol & Topamax.
Since my original post to this poll I have tried 2 other Anti Epilepsy Meds so all up I tried 5 Anti Epilepsy Meds.

Tegretol 2002 - Current
Lamictal 2004 - 2006
Topamax 2006 - 2008
Keppra 2008 - current
Neurontin 2009 - 2010

I only noticed side effects from 2 of the meds -
When I was on Topamax I didn't have a big appetite & ended up losing about 20kg.
Neurontin made me extremely tired & I had bad mood swings, could snap at someone or cry at the drop of a pin.
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #153  
Old 03-06-2012, 08:01 AM
New Here
 
Join Date: Mar 2012
Location: Scotland
Posts: 3
Thanks: 0
Thanked 0 Times in 0 Posts
Hello all, new-ish here, lurking for a while & just thought I'd add my list to the growing number.

Carbamazepine (2400mg/day)
Gabapentin (Caused me to stutter, forget words in mid sentence, weird facial stuff)
Lamotrigine (Aggression)
Vigabatrin (Don't recall side effects but it had no effect on seizures)

Have been on Tegretol PR since 1994 when I was diagnosed and had my first tonic clonic, had absence seizures since an extremely long operation to reattach my arm after an accident in 1986, 11 hours in surgery under general anaesthetic. Carbamazepine has been my constant but I've had the other three above added at various times.

Last edited by cogent; 03-06-2012 at 08:09 AM. Reason: Quantity error in meds.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #154  
Old 04-01-2012, 02:00 PM
New Here
 
Join Date: Jan 2012
Posts: 8
Thanks: 3
Thanked 0 Times in 0 Posts
I have been on carbortrol and lamictal. They had to switch me back and forth because I got prego. So my body has a lot of changes and it seems to me I have not been seizure free for four years thats when I was diagnosed. I have simple complex seizures...I also have those auras. A few months ago they put me on keppra and talk about mood swings. after that whole ordeal they kept me on carbortrol 600mg and started me on vimpat 50mg i been feeling great on it! No auras nothing. But yesterday the whole family is sick so I decided to take a vitamin zinc 50mg I took it with me meds all at the same time. 5hrs later felt an aura and had a sezuire. That is the only thing I can think of that would cause me to have a sezuire didnt last long. I know vimpat is a new drug and it usually takes the body 4hrs to absorb. I know some meds you can not take certain viatmins cuz it could intefere. Any thoughts?
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #155  
Old 04-12-2012, 05:44 PM
New Here
 
Join Date: Apr 2012
Posts: 2
Thanks: 0
Thanked 2 Times in 2 Posts
I feel like I was on every medication out there. When I was first diagnosed with myclonic seizures, my neurologist tried all the medications out there (I think Depakote was my first one). Finally, he put me on Clonopin (worst stuff ever invented -- for me that is). I was on that for years, then switched to pheno... and finally tegratol... When I moved I started seeing a new neurologist who questioned all the meds that my previous neurologists had put me on. He said that he didn't understand why I was taking what I was, since it was not designed to control my type of seizures. He had me chart all my triggers, then he took me off medication completely (this whole process took almost 2 years). I am thankfully medication free and have been for 12 years. I still have occasional myclonic episodes, but they are very rare and I am aware of what triggers them. I so hated being a guinea pig for my former neurologists! Thankfully I finally met someone who took the time to get to know me and helped me really keep track of the triggers.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
The Following User Says Thank You to gr8snowflake For This Useful Post:
SQUIRT (04-12-2012)
  #156  
Old 05-18-2012, 10:00 PM
Joined the Party
 
Join Date: Mar 2012
Location: Australia
Posts: 67
Thanks: 10
Thanked 18 Times in 13 Posts
When I had my first 'real' tonic clonic last year I wad put on tegretol before I even saw the neurologist. Unusual I know, but I had had an undefined seizure in my teens while on mushrooms. When I kept having serious migraines it was upped, and then upped again after my second tonic clonic. After complaining to my gp about serious light sensitivity and constant headaches I started the wean onto lamictal. This is my last week of taking both. I'm praying lamictal works because the next attempt is keppra, and with my history of emotional instability, lepers scares the crap out of me.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #157  
Old 05-19-2012, 04:42 PM
RachelinAZ's Avatar
Weaving the Community Fabric
 
Join Date: May 2012
Location: Mesa, AZ
Posts: 110
Thanks: 70
Thanked 19 Times in 15 Posts
Dilantin (ruined my teeth), Depakote (made me almost non functionable -wanted to sleep all of the time) and Tegretol, which I don't have any major side affects. I have gained weight, I can't lose and wonder if it is part of the Tegretol.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #158  
Old 05-19-2012, 05:04 PM
CQ:)'s Avatar
Venerable Voice of CWE
 
Join Date: Aug 2007
Location: Australia
Posts: 1,523
Thanks: 149
Thanked 138 Times in 104 Posts
Originally Posted by RachelinAZ View Post:
I have gained weight, I can't lose and wonder if it is part of the Tegretol.
A friend of mine who also has epilepsy was telling me once how she tried Tegretol for a little while but she gained weight while on the Tegretol. I've seen posts from others on here that say Tegretol has affected their weight aswell.

I've been on Tegretol since 2002 & I can't really say whether it has affected my weight because I was already overweight when I started on it. I am thinner now but that is mainly because I was Topamax from 2006 - 2008 which made me have a lost of appetite.
__________________
I know the meaning of LIFE ... Laughter Is Freaking Essential!
Add Post to del.icio.usNetscape this post!Stumble this Post!
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
lamotrigine, epilepsy drugs and birth defects Bernard The Kitchen 21 09-14-2009 11:04 PM
No Drugs ~ Natural Remedy RanMan The Kitchen 2 10-04-2006 12:15 AM
When weaning off drugs, RAMP DOWN Bernard The Kitchen 2 02-10-2006 11:59 AM
Counterfiet perscription drugs being dispensed at pharmacy RanMan The Lounge 0 06-24-2005 02:35 PM


All times are GMT -5. The time now is 11:25 PM.


Powered by vBulletin® - Copyright ©2000 - 2012, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.