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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Tried 3 meds

Hi,

I started off with dilantin after the first grand mal in 1988. After having 2 more, I switched to 600mg/day of tegretol and have been seizure free for 20 years. However, I didn't know that the medicine was robbing my bones in the process. After a mountain bike crash last June, I was diagnosed with osteoporosis and am currently in the process of switching to Keppra. Once on that for a month, I'll begin ramping down on the tegretol.
 
Well, the Keppra side effects (extreme drowsiness, low energy, etc) didn't work well for me. The medicine created a tired zombie so I'm now ramping down on it and will try ramping down on all seizure meds. I hope this works since the best medicine, is no medicine.
 
It seems to me that all prescriptions have value, but the right ones
need to go to the right persons. Sometimes the method used to prescribe like throwing mud at the wall - -if some sticks, well! that proves it works, while the other verdict is "tough luck".
Dilantin was my first prescription and I was in a constant state of vertigo. On Keppra I would erupt in awful rages. I was in a constant fog, living in a tri-level house, having no idea there were other drugs on the market. Then a new Dr. talked to me at length. She described the characteristics of drugs she knew and how they worked on different levels. I asked to be put on Topomax and, even on the substitution method, I felt the difference within a week-and-a half. My energy has returned, I'm beginning to feel, (guess what!) "Hey, that's me!"
Experiences with food allergies help me understand some of this. I love fish, but can't eat shell fish. Once I took fish oil capsules which made me dreadfully ill,because one ingredient, listed on the bottle in tiny, tiny, print, was marine oil. I've found only one fish oil on the market gauranteed to be totally pure. I'm allergic to sun and take Vitamin D which helps me sleep better...the list is endless. I'm sure other vitamins and minerals, which I take, helped me keep my hair when I was on Keppra.
Its possible that "ingredients" in some medications have an adverse effect on some people, like a food allergy. What's good for one patient is very bad for another, but, sadly, no one knows until the effect is seen.
 
I would say most of them do. But the one they just took me off of recently was supposed to be black boxed. A lot of suicides on it. Along with mental disorders and blood disorders. To me it is not worth creating another disease.But I do understand what you are saying and I agree.
 
Maybe Bernard should add

"Walking Pharmacy Here"

To the Poll Line!


:agree:
 
caverdude said:
Well, the Keppra side effects (extreme drowsiness, low energy, etc) didn't work well for me. The medicine created a tired zombie so I'm now ramping down on it and will try ramping down on all seizure meds. I hope this works since the best medicine, is no medicine.
Click to expand...
I have the same problem taking 3000mg keppra xr, but i also take adderall to have some sort of brain activity, and my nuerologist prefers I stay a zombie.. I was on trileptal and was zombied then. I did take concerta which worked great but insurance does not cover it.
 
How Many different epilepsy drugs have you tried

I''ve tried so many medicines Through the years and developing rashes and side effects due to my cerebral palsy I could be a Test Dummy :roflmao: for side effects and what could happen if you take everything on the market and can't take them. so far Lyrica, zonegram have cooperated with my body
 
I don't understand why someone who is not allowed to drive is expected to drive there miserable self to the pharmacy for anti convulsant drugs.. Let see I cant drive...I really really want to know what the heck is wrong the AMERICA except that our govt' sold our souls and heritage to for money.
Why can't it be warmer in Canada!
 
I started a new drug on Tuesday and itis if I can think right now....serequel
 
I've taken phenobarbitol, mysoline, tranxene, dilantin, tegretol, zonegran, lamictal, keppra.
 
depakote is by far the worst AED out there thats what i think i gained about 40 pounds in 10 months couldnt think and slepped all the time right know im weening myself off of keppra and we will see how that goes for a few months
 
neurontin was the worst drug for me I gained 35-40 pounds and was suicidal.
I've been on1 Dilantinwas on for 34 yrs..Depekene turned me into a witch..Depakote allergic to.Felbatol couldn't keep anything down.Gabatril allergic to6.Keppra allergic to.Lamictal allergic to.Lyrica couldn't handle side effects. just worked some.Mysoline made me hard to live with.Phenobarb depresses me real bad.Tegretol XR sent my sz's through the roof.Tranxene Trileptal allergic to. Topamax lost weight Zonegran slept all the tie lost weight.
Valium kept me quiet in H.School
I take Tegretol Clonazepam topamx Diamox

:ponder::banana:
Belinda
 
Drunk on Medications...

Only recently I've found a neurologist who doesn't insist that I take handfulls of pills to stop my seizures. She actually wants to see what happens with vitamin supplements.

The past 25 years I've been on Dilantin, Tegretol, Valproic Acid, Lamactil. I've been on varying doses and combinations. I've tried to quit with disasterous results - now I realize I'll never be able to stop taking them because my nervous system has become so adapted to them.

To date, I've never found anything that reduces the frequency of my seizures. Isn't it about time neurologists come to the conclusion that these meds do NO GOOD AT ALL!

I feel like we are rats in some laboratory being tested with all kinds of dangerous chemicals by mad scientists!

Lately, on a combination of dilantin and lamactil, I've actually been staggering and losing balance as though I were drunk. I forget names and numbers. I'm really out of it and am considering reducing against MD's orders.
 
I have been on them all. And now I am on Vimpat. I feel much better and my seizures are much better under control.Oh. How I know that feeling of dizzyness and not sure what I am doing. But don't quit ok? I do massage therapy to and that helps with my myoclonic seizures. Less stress.
 
I started out with Dilantin and that made me think I was literally loosing my mind, very scary indeed.

Then I was on tegretol and I was getting a few seizures and then they put me on Carbatrol and that worked better.

Then they put me on Topomax which took away all my migraines but made me loose alot of weight and It gave me insomnia and it messed up my focus.

Then they put me on ZOnegran, it was great at first but then it made my stomach hurt and it made me real nervous.

So now I am on Keppra and a little of my Cabatrol and I am feeling a little irritable but the Dr says he wont change me med.:e:
 
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