Lottie Ashby

5 years ago my son was 17 and had grand mal seizures as well as partials (dizzy spells) and auras which were also considered seizures. He went on a double blind study with Glaxo-Welcome of either Depacote or Lamictal. Very soon into the study we figured out that he was on Lamictal. Of course, the doctor did not know what medication he was taking either until the 9 month study was over. After that, Glaxo notified the doctor which medication my son was taking. They started at 25mg and ended up at a therapeutic level of 200mg 2X daily. He's been on this dosage all this time and without any side effects. This is the only medication he has ever been on. He decided that he would try halfing the dosage and found out in a couple of days that he could have another seizure. So, he does not miss his meds ever.
Before he was diagnosed at 17, he went to a hospital and they put 23 electrodes on his head for 8 days under a camera, hoping that he would have a seizure. It didn't work but they did get documentation of recorded waves when he was near one. He then got hooked up to 13 electrodes and took home a computer. We were successfull to get a seizure on that plus home videos. They do not know the cause or how they happen, even from this kind of exploring that does help some people and tells where the seizure begins and end. The doctor did not find an area that he thought could be operated on so that the seizures would possibly be eliminated. Make sure that your doctor uses this option before he thinks he should operate. My son has been very fortunate. He is able to drive and runs a computer store.

I have observed with people who are on many medications for seizures and maxed out to the point that they cannot function without assisted helpers, they hesitate to change medications because it is so risky & everyone around would prefer for the person with the seizures to just be happy like they are. Sad to say, these people are not functional in their life and unless family advocates & supports for them to try another medication, some healthcare workers would rather skirt around it and not risk the possible dangerous seizures that could come out of changing medications as well as risking the possibility that this person might very well get functional and not need the services that employ caregivers and services from facilities who offer services for these individuals.

I have watched this happen and the doctor which is the primary care physician said that the patient was maxed out on the medication and needed a change. The neurologist said that they would up the amperage of the little divice in his chest that he swipes a magnet over so that it activates it and the beginning of a seizure is stopped. Well, that's nice for everyone but the patient. This patient is still dysfunctional and dependent on everyone because is STILL maxed out on the 4 medications that he's been on for a very long time and making him slow to speak and incapable of independent living which doesn't make it very good for this person. I see that this person could possibly take a chance and try this medication with the support of the people around him. Yes, it's risky and switching meds is life threatening due to the risk of a possible seizure. Since this person has had the same kind of seizures that my son had, I think it's worth a try, but no one else sees this situation yet like I do, but time will tell. Medications are changing fast and more effective. They see the neurologist as a smart doctor (which he is) that looks after the best interest of his patient. Is that true or is the primary care physician right too for think that he's maxed out on his medication and needs a change? People who are disabled surely need supportive parents or family members as well as advocates that will watch out and speak up for these disabled people (or) the system will trap these people and lock them into their facility or program services because they want them to stay just the way they are, not having seizures but being maxed out on so much medication that normal functioning in daily functions as well as independence is impossible for this person with epilepsy without paid assistance around the clock. This situation is good for everyone but the patient who is in a way trapped around people who either don't speak up or are ignorant to the real situation that exists.

For you, sounds like you have a doctor that will bend to what you want to do and work with you. You are furtunate!

Go for it! Although there may be some risks, life is a risk, and that makes it exciting and worth it!

Lottie