How many different epilepsy drugs have you tried?

How many different AEDs have you tried?

  • 1

    Votes: 33 8.8%
  • 2

    Votes: 54 14.4%
  • 3

    Votes: 52 13.9%
  • 4

    Votes: 46 12.3%
  • 5

    Votes: 38 10.1%
  • 6

    Votes: 24 6.4%
  • 7

    Votes: 28 7.5%
  • 8

    Votes: 23 6.1%
  • 9

    Votes: 9 2.4%
  • More than nine

    Votes: 68 18.1%

  • Total voters
    375

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tegretol,Dilantin,Valproic Acid,Lorazepam for my Myoclonic s./ vimpat, Keppra acetazolamide to keep the extr fluid out.And other for stomach,ulcer and stomach pain. That is all I can think of wright now..When I was in my coma they they were working day and night to stop the seizures.Ill have to find out what it all was.
 
I think just about every med I was on has been listed, Tegretol,phenobarbital ( and all its related meds),Lamictal,Keppra,epilem ( and all its related meds), I have forgotten the ones when I was younger, I know there are others but I just cannot think, these are the latest
 
Well the first one in 1975 was tegretol. My mom said I was not very agreeable with that, the last one they put me on was a new one called Potiga. But it caused me to have a lot of grand-mal seizures last week.6 or 7. Needless to say I don't take it anymore.
 
Medications: What worked and what didn't .

I was had my first Grand Mal seizure when I was 18. My doctor put me on Dilantin, and Phenobarbital where I had occasional breakthroughs although this was often because of a missed dose. As a high school / college student I wasn't great at medication consistency. I improved greatly as I got older with this, and remained on it for 20 years. Out of no where I started feeling "not right", its hard to describe but like a drunk, intoxicated feeling. They took my blood levels and found crazy high toxicity levels from Dilantin. My neurologist switched me to Lamictal. This also made me feel dizzy, and just not right but I didn't have any seizures. He then added Keppra, and took me off of Lamictal- immediate Grand Mal so we went back to the combo of Lam/Kepp. Seven years seizure free, and I had a breakthrough Grand Mal. I was devastated, and completely freaked out. He upped my Lamictal to 500mg, kept my Keppra at 2000mg and added Klonopin .25 to the mix. I have been fine for the past year, but still have occasional days where I feel intoxicated. I have learned to live with it, but am sometimes scared.
 
I take 1250mg oh lamictal morn n 1250 a nyte n 225 of Topamax morn n nyte I thought I was only on a low dose with me being on 4 otha seizure meds xx
 
I was on a very high dose of Topamax and it gave me many many other issues. I am now on trileptal, and only have a small about of issues.
 
I was on Epilim (sodium valproate) they worked but made me always hungry so i went off them for years now I'm on lamotrigine that also works with no side affects so I have been lucky


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2. Keppra and lamictal. Keppra is screwing with me so I'm being switch to Lamictal only.
 
Dilantin, neurontin, keppra, topamax, carbatrol, zonegran, and ativan as needed.

Dilantin has definitely been the worst one, followed by neurontin (at least for me).
 
Started on Tegretol which was worse than having seizures. Headache, nausea, oatmeal brains. Kind of felt like the worst hangover ever only it went on All. The. Time.

Then I went unmedicated for a stretch. Then tried Phenobarbitol. Then added Valproic Acid and finally got 100% control.
 
Phenobarbital(knocked me out!), depakote,depakene, dilantin, zarontin, tegratol, vimpat(caused double vision!), nerontin(caused increase in seizures!), topamax and I know there were more but I can't remember all of them. It has been over 30 yrs.!
Currently I am on Depakote and Dilantin.

I want desperately to get off of Depakote!
 
My girl has had Epilepsy since the age of 6, she was initially put on Clobazam for quite a while. then her seizures really incereased at 10yrs began with Clonidine & Tegretol which caused so many dramas which did not work for her.
Next was Keppra which made her nuts and I was not warned about certain side effects by the Dr.
I get very frustrated when I am not informed about the full side effects, as a very minor prob can be a major one for my girl.
Now its Trileptal and we have had to increase its dose due to increase in seizures.

Its sort of a love/hate relationship with these meds thats continual.
 
2

I was diagnosed with E 16 years ago and they started me on Tegretol...which didn't do shit...then started me on Depakote...which did shit...in other words prevented me from spontaneously flopping on the ground in a fetal position like a fetus being electrocuted...nvm the sudden unexpected dropping/throwing things, feeling like I was kicked in the back of the leg, and uncontrollable eye spasms...oh and can't forget the nasty palpitations/tremors...which caused me to have horrible anxiety and sometimes hyperventilate...did I mention the disgusting dizziness/bowel issues...I honestly think a lot of my memory has been wiped or suppressed somewhere due to all the trauma...or maybe it's caused me to lose my freakin marbles...only to find that life is a gift wrapped in a curse...oh the irony never ends my friends...


Anyway...recently they wanted to give my Depakote a friend...Keppra to be exact...and they did...but I never took it...instead my new friend is Ativan...

I'm suppose to be taking Remeron to help me sleep but Depakote and Ativan don't want to share :rolleyes:
 
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I was diagnosed in 1949 at 6 years of age. They started me on Dilantin. I broke out in a rash. About 2 weeks later, my Mother rushed me to Children's Hospital in San Francisco, CA. I was losing my skin. I had Steven's-Johnson Syndrome. My parents were told that I was going to die.

I cannot count how many medicines I have been on or remember most of them. I will give it a try. I doubt if they will be in order.

After Dilantin, Zarontin (12 yrs), phenobarbital (20 yrs something), Lamictal (50 yrs something), Neurontin, Keppra 60 yrs), clonazepam, Primidone, Lamotrigine,Lorazepam, Ativan, Tegretol, Depakane and more that I do not remember.

I am being taken off of Neurontin and Keppra now. She is going to take me off slowly so I do not have status seizures.
 
I don't know what drug I started on but I was dx'd in 1964.My seizures started well before I was dx'd from what I heard from my Older sister.:twocents::agree:
 
LAMICTAL,PHENOBARBATOL ,KEPPRA . ZORONTIN ,DILINTIN , LORAZEPAM, NOW I JUST TRIED ONFI. Has anybody tried that? I don't like it personally.It's for people who have a lot of different kind of seizures.
 
seizures starting 24 years ago and problems that cannot be fully taken away, many drugs have come and gone
 
Hi,

I've been on over 10 different AED's and then my Dr. did a DNA test on me and found out I was drug resistant to a AED's out on the market right now.
The worst drug was Neurontin it caused my absence sz. to go into absence status sz. where I would be out of it from 30 min- 3hrs. I later found out that the drug can cause epilepsy after watching the NBC DATELINE and how one of Neurontins drug co. employees turned them in because they were doing off market labeling with the drug along with knowing it could cause sz. for some people who never had epilepsy. The last I knew there was a $240 million class action lawsuit against the company. I wish everyone only the best of luck and May God Bless All of You!

Sue
 
Nine in total. Some lasted longer than others. Think I've been on Keppra for about 14 years. The worst were Topamax, which caused extreme weight lost and the dopieness that gave it the nickname Dope-amax, and Zonegran, which I think actually caused me to have nocturnals and made my cps worse.
 
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