Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

New released AED. Does anyone have experience with it?

Mon, 03/21/2005 - 15:07
I'm intractable and it might be because I have gigantic, in some cases not only severe but extremely bizarre side effects to all AEDs but two. One doesn't help me. It's like taking water. The other helps minimally. I take Klonopin too, which I'm never sure if that's considered an AED or not. I know many take it. For me it quiets the many jerks and twitches I have and is supposed to enhance the one AED I can take. It's always a concern that I'm so limited and now has become a necessity that I change my primary AED, get off of it and onto another and I'm in a real panic. I can barely stand to think about going through AED trials again, after two miserable years of AED trials that left me sick, dysfunctional. My family doctor and I have talked about this necessity as well as my epileptologist for me to switch AEDs. There was one attempt just to get me off in a slow wean with IV sedation the current AED I take (Dilantin) and onto my epileptologist said probably two others, but I went seriously status and the attempt was aborted for then. I was sent home, and was put on an extremely slow wean again, the thought being when my blood levels would drop to a certain level, then a new AED would be slowly introduced, but my sz'ing increasd almost immediately so that was aborted. I've since then tried this very slow wean again several times, at home, each time started sz'ing. I can't do it without IV sedation in the hospital, apparently which I'd like to avoid but maybe I can't too. I still have to do this though as I'm having some serious and not reversible problems from Dilantin. Last week my family doctor told me of a new AED recently released that she said is a totally different formula from all the others. I don't like taking newly released drugs. It seems to me that often I've seen new drugs, with their listed potential side effects, not really known well until they are released, many start taking them, and it's then more side effects become known. For instance a very effective antibiotic, Floxin, was released some years ago with a 5% reported incidence of night terrors. I didn't know that. I had nigh terrors ALL night long for 5 days and had to go off of it and the next year the statistic for night terrors on Floxin was increased to 50% incidence, as an example of learning more about new drugs. Keppra is another one. I don't known if deep black hole depression was even known as a potenteial side effect but it started occurring to me and I didn't realize it was the Keppra. I assumed, of course, I was going crazy, again. Again because a lot of the AEDs make me feel that way. Then I started reading posts after Keppra had been released for several years and many were also experiencing this depression so severe, like me, they couldn't take it. So I'm apprehensive always in being one of the first to take a new drug. Still, this drug might be an answer for me. My primary sz problems are with generalized sz's although I have TLE's too. I can't remember this drug's name, I know nothing about it and my pharmacist wasn't sure which one I was referring to either. Does any one know what the name of this drug is? I'd like to do m own research on it but need the name of it, but more I'd like to know if anyone is on it, and how you are doing, also what type of epilepsy it's targeted for. My epileptologist has not mentioned it but for now, we've dropped talking about me switching AEDs because functionally I've moved too far away from him, am supposed to be treating with a different epileptology clinic, had other health problems he wanted me to get resolved before attempting weaning me off Dilantin which appears,and he predicted, would be difficult and starting AED trials, again. He is far away right now but he has gone through so much with me he's the only one I trust, and I'm moving back to his area too soon. Any information anyone can give me will certainly be welcome.thank you.Gretchen

Comments

RE: New released AED. Does anyone have experience with it?

Submitted by batman on Mon, 2005-03-21 - 13:06

Gretchen,

 

Let me see if I can help you with this by starting with this website http://www.epilepsy.org/Visitors/Centre/AEDs/index.cfm

 

It is the AED Database search page through the International League Against Epilepsy. On the AED Database page, you can click and search by three separate routes. Click to select a brand name; Click to select a generic name; OR, click to select a country. See if any of the oneÂ’s listed on the drop down menus sound familiar to the one you donÂ’t remember the name for. Have you tried to re-contact your family doctor to ask her for the name of that new AED? My next shots will also end up being new AEDÂ’s, but IÂ’m NOT going to start any until I spend a great amount of time with the current epilepsy treatment plan, which basically is just making an adjustment of what you eat during each meal.

 

Let me know and IÂ’ll be glad to help you do some searching for new info about it.

 

Just so you know. IÂ’ve been on Lamictal since Sept 1997. But one of my ex-neurologists prescribed me to add an additional AED, Dilantin, which started in the following month of Oct 1997, seeking for a shot to control my cps. The cps didnÂ’t stop they increased greatly in frequency. It wasnÂ’t until Nov 2001 that when I went in for my 2nd VEEG, supervised by a epi, who found that one AED was knocking down the potency of the other. He pulled me right off the Dilantin and replaced it with Divalproex [slow release of Depakote]. It took over a year additional amount of time and the cps stopped completely.

Bruce J

Gretchen,

 

Let me see if I can help you with this by starting with this website http://www.epilepsy.org/Visitors/Centre/AEDs/index.cfm

 

It is the AED Database search page through the International League Against Epilepsy. On the AED Database page, you can click and search by three separate routes. Click to select a brand name; Click to select a generic name; OR, click to select a country. See if any of the oneÂ’s listed on the drop down menus sound familiar to the one you donÂ’t remember the name for. Have you tried to re-contact your family doctor to ask her for the name of that new AED? My next shots will also end up being new AEDÂ’s, but IÂ’m NOT going to start any until I spend a great amount of time with the current epilepsy treatment plan, which basically is just making an adjustment of what you eat during each meal.

 

Let me know and IÂ’ll be glad to help you do some searching for new info about it.

 

Just so you know. IÂ’ve been on Lamictal since Sept 1997. But one of my ex-neurologists prescribed me to add an additional AED, Dilantin, which started in the following month of Oct 1997, seeking for a shot to control my cps. The cps didnÂ’t stop they increased greatly in frequency. It wasnÂ’t until Nov 2001 that when I went in for my 2nd VEEG, supervised by a epi, who found that one AED was knocking down the potency of the other. He pulled me right off the Dilantin and replaced it with Divalproex [slow release of Depakote]. It took over a year additional amount of time and the cps stopped completely.

Bruce J

RE: RE: New released AED. Does anyone have experience with it?

Submitted by Hope19 on Mon, 2005-03-21 - 15:07
I am being slowly taking off of Dialintin, I was on 1,400 mgs but now im on 800 but sence they have started taking me off of it i have been haveing one after another i look up things and wirt in between sz's i am also on triliptal and kolinapian and adavian..hope

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.