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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Hawke, when you own that pharmacy, will you give me a discount? Just joking. :roflmao:

I am lucky to only have ever needed two epilepsy drugs over 27 years, but take pretty high doses of each. Visits to the pharmacy are cheap. I take 6 other medications/vitamins also.
 
Aed's

Over 5 years,I have had Lamotrigine,which i had no side effects from,but it didnt stop my seizures either.Then I was put on Epilim which made me sleep for 18 hours a day,so i was put on Tegretol,which i was badly allergic to and my liver started to fail,i spent a week in icu (my liver's ok now,i have to have monthly blood tests the vampires). Then I was put on Gabapentin (I think neurontin in america?) and now my doctors put me on topamax at the same time.That makes 5.
 
I've tried 19 different epilepsy drugs had brain surgery and have a VNS.
I've had Epilepsyfor 44 yrs.
I'm allergic to 5 and med resistant to anything in the Tegretol family that's not the original Tegretol.
I take Tegretol, Topamax and clonazeapam.
 
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How many AEDs- it seems like alot

I started with dilantin- which was the miracle drug of the late 60s early 70s. When they realized that I had more than one kind of seizure, they added zarontin. This was fine for 8 yrs, but when my hormones started to change, I had my second seizure. For a short time I was on phenobarbitol, but that made me sleep to much. The doctor sent me to another doctor who dealt with older patients. He took me off the zarontin and but on depakene. The depakene gave me an upset stomach, so he put me on depakote(which was relatively new at the time). After a few years he took me off the dilantin and put me on tegretol and depakote - which I took for almost 20 yrs. Since then I have tried Depakote ER, which I could not afford without insurance, topamax, which gave me side effects. I went back to valproic acid (generic) and carbamezapine (generic tegretol). Now I feel it is time to to look into modern meds that won't keep my metabolism so low, and help deal with my perimenopausal state.
 
I've been on a lot...almost all of them...more than once. First alone and then in medication cocktails.

Too many to count and I'm too drunk to remember :agree: Cocktail anyone? :beer:

-Julie (overmedicated by the under-regulated) :e:
 
I love that , to many to count and to drunk to remember. And I was just talking to somebody about Garth Brooks today! Well, I am going to be a happy camper while I am on my meds, seizures forever. Thank-you for making me laugh.
 
I've been on only one drug but for three diagnoses ! I've been taking sodium valproate started at 200mg , current dosage is 1500mgs a day. As far as side effects go , i've had hair fall out , got fat , irritable, and my liver has lost it's mojo a bit ( liver enzymes elevated.) I applied for life insurance recently and they caught it. They thought i was a drinker!
 
Lets see. Tegretol, valproic acid, toxic on that one. Topamax,Lamictal,zorontin, dilantin,lorazepam, Keppra,zonisamide. I know there are a few more as a kid but I don't remember.My liver had a few spots on it to. I can't believe they accused you of drinking knowing the drug you were on. How often do you get your levels checked?
 
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:e:ummmm, tegretal, klonapin, topamax, depakote, triliptal, keppra, neurontin, ??? I reckon that's all, some meds were used for other purposes at the time, but considered AC???:e:
 
In the very beginning in the 1950's - none, 1980's central florida had no solution for me - said I had reflexive epilepsy - so went to Memphis, TN and was told Temporal Lobe Syndrome and was put on this and that and it took 1 1/2 yrs to stabilize me - then, I went to some church and came off all and was ok until about 6 mos or a yr ago, I forget. This neurologist/neurodiagnostician says TLE - complex partial and partial complex and complex migraine???? If I went to a balloon doctor would they say I had balloon complex??? I hate going to doctors. At least it's not in my head - oops, TLE, I reckon that's in my brain in my head. SHOOT - can't win for losin'!! lol
 
Life goes on though. I am not going to stress . It is hard when you are changing. But Its like taking other meds to . Your body grows . Most of the time you out grow any kind of med.And thank God for other methods.I am 43 and I have been on I don't know how many.But , I have learned to listen to my body. And to teach my son the same. He's getting pretty good at it to, I must say.
 
Yeah chin...especially when you consider that 1 in 100 Americans has epilepsy. I'm now on my 3rd med. Dilantin 300 mg/ day.

I was on phenobarb (low dose) 32.4 mg 5x/day for 20+ years....and depakote (low dose) for 20+ years.
 
3 for me. Been on Depakote for about 12 years. Was on Lamictal for about 6 months. I had a lot of myclonic seizures on it. Just got Keppra added to my depakote due to a couple of seizures i had in the last week.
 
I had to think about this one!

Tegretol: didn't work.
Depakote: horrific side effects, including massive edema.
Klonopin (adjunct): worked at first, then I developed tolerance.
Zarontin: I think this is the one that put me to sleep.
Lamictal: worked for a while, then failed.
Keppra: went psycho.
Topamax: worked for a while, then failed. (Pity, I liked the appetite-suppressant side effect of that one!)
Trileptal: worked for a while, then failed.
Ativan (for emergencies): now deemed unnecessary.

Right now I'm taking a combo of Zonegran and Tranxene for my myoclonic seizures.
 
I was tried on many many drugs before finding out what worked best for me...Most of them I was allergic to, however there were a few that had no effect on seizures.

Lamictal: currently taking 600 mg
Keppra XR: currently taking 2000 mg

Tegretol: allergic
Dilantin: allergic
Depakote: allergic
Topamax: quit working after 9 years
Zonegran: turned me into a psychotic basket case
Felbatol: taken off of due to aplastic anemia concerns
Neurontin: didn't work
Clonazepam: worked, but made me tired
Ativan: for emergencies
 
I have tried Tegretol when I was 14 to two years, then stopped that to take 4 other meds for auto-immune condition in my ears causing deafness. I took Tegretol XR but didn't work well, then tried Dilantin but it didn't work at all, then tried Keppra and Tegretol XR together which I take now. I would not like to try anything else but might have to since meds are not working right. I was taking Dilantin, Keppra and Tegretol XR at one time till I made the change over to Keppra and Tegretol XR together.
 
I am currently taking Keppra, Lamictal and Depakote. So far it has worked fine. Hopefully my body will cooperate...but I think we all agree that sooner or later the meds wont work anymore.
 
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