I was wondering if there is anyone on here who started taking AED's and the seizures stopped completely...for good...never had another seizure?
I read so many posts about people who struggle with meds and seizures; having to change or add to their meds all the time, and that leads me to believe that meds may "help" but not actually "stop" seizures. Is that correct?
My sis is doing fine on the Dilantin her Neuro gave her (so far) but we're just curious if it's possible that she will be seizure free with the first drug they tried. We're still new to this and trying to understand it.
Having said all lof that, we realize there are no guaratees in life, but I'd just be curious to know what the percentage rate is of being seizure free on medication. Thanks.
In my case, when I was started on meds at age 5 after brain surgery (tumor removed) I did much better than expected. Seizures were very well... pick your word...controlled, supressed for the NeXT 12 or so years until about 96.
But go away? Thats hopefull.
Think of the medications as surge protectors; like the one you have your computer plugged into. Usually it catches the spikes. But they can't prevent power outages.
I've been on over 8 meds since 81. I stopped counting all the combinations tried and the exact number of drugs I've had. I will always need to be on some form of treatment so supress the seizures from raising up. However thats MY case. I had a brain injury (tumor) that started my seizures.
With some children AT TIMES if no more than the one or two seizures that started them on medications have occured after 4 years of no seizures at all; they MAY try removing them to see if they will still need the medications or not. However that isn't as common as we would like.
One piece of advice on Dilantin... Don't let your HMO or whoever picks up your meds to change them over to generic. There is a VERY noticable difference between Pfizer (brand) and generic Dilantin. Generic has a solid pill in the capsul rather than powder in the brand name kapseal. If needed her doc will write do not substitute on the script. The medicine content varies in generics as well; as well as the disolve rate.
I like your analogy of surge protectors. That makes it very clear as to what the meds do.
Yes, her Neuro told her to be sure and NOT take the generic ones so she's aware of that. I wish he could tell us more, though, about this whole situation. He seems to just want to give her the bottom line; no details. But she's comfortable with him and he's her Neuro so, being the sister, I'll butt out.
I don't know the statistics on how many people have their seizures controlled by the first med they try, but I do know that for children, if you don't get seizure control with the first 2 drugs you try, you have a very very low chance (something like 5%) of ever having good seizure control at all (although some childen simply grow out of their seizures).
So I don't know if there are good statistics on the number of adults that are seizure free on meds, but you can get your seizures down to liveable levels with meds. If you respond to the first or second drug you try, your chances of achieving seizure control are generally better (even if you do need to change drugs later). Try google or pubmed.gov for more info.
Also, you should discuss this more with your doctor, but it's important to understand that every time you have a seizure, a group of neurons are firing together. Neurons that fire together, wire together. Therefore, repeated seizures will strenghten and grow a "seizure network" that can make seizures even more frequent, effecting more areas of the brain. Its a vicious cycle, which is why these powerful drugs are necessary.