[Porkette]

Hi Everyone,
Over the past 35 yrs. I've tried many different AED's for my absence, cp, and sp sz. If you are willing would you list the type of sz. you have and all the AED's you've tried. Here's my list:

Phenobarbital, mysoline (the best)
zarontin, diamox (the best)
dilantin, ativan
tegretol, lamictal
trileptal, neurontin (the worst causing status sz.)


Here's wishing all of you well and May God Bless You!



Sue

[Cedar]

Thanks good idea.

I have had complex and simple and seizures for the last 39 years.

I have been on the following drugs:

Tegretol for 28 years got off it due to toxicity
Dilantin for 35 years. Had to go off it due to being on it so long.
Phenobarbital for 7 yrs, was taken off and put on tegretol.

2004
began trying ot find replacements so tried the following:

Keppra - still on it
Trileptal - Currently on
Lamictal - On low dose for mood up and downs
Deprakote - did not work
Zonagran - made me sick to my stomach

I have also had a VNS inplant and removed as it did not work.

My meds still do not keep my seizures under control.

Hope this helps.
Cedar

[Porkette]

Hi Cedar,
Thanks for sharing what AED's and type of sz. you have. It looks like we have a lot in common with the AED list. I had brain surgery twice to help reduce my sz. where they removed 75% of the RTL and all of the right hippocampus. It was well worth it because now I only have sz. when hormones are changing or if I'm sick with a cold or virus. Here's wishing you well and May God Bless You!

Sue

[Darlene]

I have had epilepsy for a good part of my life. The seizure I hace are absence. I have had 6 gand-mals. Three of those were in a 24 hour period, man that was hard. But I have had a grand-nal in eight years.

Medicines I have been on:

Dilantin
Mysoline
Meberal
Tegretol (that was a no no for me)
Keppra (still on it, but have been reduced some)
Lamital (still on it but also has been reduse.

Also I had a VNS implant, it has help me pretty good. My spells have cut a good bit the communation of these three.

Darlene

[lor]

There are too many for me to list. I could look at a list & tell you what I haven't tried. It looks like ppl are also listing 'what works good'. Different meds work different for everyone.
I do want to say: Lamictal controls my GMs & Topomax was worst for me.

[flopper]

Dilantin, neurontin, zonagran, pheno, lamictal, keppra,tegretol, trileptol & that's just the ones I remember.
Hippocampas removed along w/ rest of the stuff they could remove w/o damaging the speech & some other area. Seizures have now become status & the VNS or neuropace (geiunea pig) are suggested.

[nana1]

I HAVE TRYED ALOT OF AED. I HAVE HAD SEIZURES FOR 50 YEARS NOW. THE MEDS I DO REMEMBER OFF HAND ARE:

DILANTIN (TAKEN OFF CAUSE OF SIDE EFFECTS)
NEURONTIN (TAKEN OFF)
PHENO( BODY GOT USE TO IT, WAS DOING NO GOOD)
TEGRETOL ( WAS TAKEN OFF BY NEURO)
ATIVAN ( TAKEN OFF)

DEPAKOTE ( TAKEN OFF)
KLONOPIN ( NEURO JUST TOOK ME OFF COUPLE WEEKS AGO)
KEPPRA ( JUST UPPED MY MG AND AMOUNT I TAKE A DAY)
LAMICTAL ( DOWNED MY MG AND PILSS I TAKE A DAY)
ZONEGRAN ( JUST DOWN PILLS I TAKE A DAY FROM 3 TO 2)
I AM SURE THERE IS MORE. THERE 50 YEARS WORTH OF THEM.
I DO HAVE GRAN MAL, PEIT, COMPLES, ETC..................
I AM NOT NOT A CANADATE FOR BRAIN SURGERY, THEY DID 3 VEEG
ON ME AND EACH TIME CAME UP THE SAME ANSWER I COULD NOT HAVE SURGERY, MY SEIZURES ARE ALL OVER THE BRAIN NOT JUST ON ONE SIDE.
MY MEDS DO NOT KEEP ME UNDER CONTROL, THE NEURO ARE TRYING TO GET THEM UNDER CONTROL, BUT 50 YEARS AND NO LUCK YET. I HAVE NO IDEA WHEN I AM HAVING A SEIZURE, I NOW I HAVE HAD WHEN WHEN I COME OUT.
NANA1

[mango_goose]

I have been on
Epilim - still on it
Tegretol - still on it
Topamax - just came off it cuz they dont know the effects on my baby
Lamictal - made me hullicinate
Keppra - didnt do anything bad, but didnt help me either

[love2laugh]

Many meds...

Depakote-- primary med from diagnoses till this past March = 14 years
(got off to plan for a baby)

Neurontin
Topomax
keppra
tegretol
Lamictal
klonopin
Lyrica (although I was put on that one for nerve pain)
Zonegran
Keppra (yes, again)
Neurontin (started it primarily for nerve pain, but has been very helpful seizure wise)
Ativan PRN-- for status/clusters

There have probably been a few more, but those are the ones I can remember right now.

*** Most all of the above medications have been used in combination with the Depakote and in various combinations with other meds too ***

The reasons for trying/adding/getting off them varied alot....

Currently on Lamictal, Keppra and Neurontin with Ativan , as needed, for status & major clusters.

I have multiple types of seizures.

L2L