Q: What is the criteria used by doctors to end medication---or is there any?? I am 49 years old, had one seizure when I was 15, and if it was left up to my doctor, I would STILL be medicated. I had another EEG when I was 22 and been off the meds (on my own) for 5 years. The test still was abnormal. Now, I have a daughter who had "status epileptus" and she was really out of control with seizures. In 1995, she had a left temporal lobectomy, and has been on medication ever since. She had one seizure about a month or two after surgery, but that's all. The EEG is still abnormal, so they won't take her off the meds. (Once, when she went back East to visit her grandma for a month, she didn't take her meds the whole time--my mom called me later to tell me that she found pills hidden all over the house) She never had a seizure. I'm trying to work with the neurologist to taper her off the drugs,as it seems to be the only way to tell if she can get along without them. (he seems surprised that I would even suggest a thing). I don't want her to be medicated all her life if it isn't necessary, (like I would've been, had I listened to MY doctor. (He did lower her dosage for a trial period--it's been3 months now--so far, so good) (I don't have medical coverage either, and have to go through government services which I would like to get away from.)
A: As you have surmised, there are no firm criteria for antiepileptic drug withdrawal, and the decision is ultimately left to physician and patient judgement. This is because there are no factors that absolutely tell us whether withdrawal will be successful, and there are potentially high consequences if seizures return.
In general the following are considered favorable factors for drug withdrawal. However, in the end, it is a sink or swim propositon. Thus, the risks of uncontrolled seizures that may occur as medication is removed must be weighed against the potential benefits of being off medication.
The fact that your daughter is not seizure free suggests that she will have many more off medications, hence your doctors' reluctance. Since people have "good days and bad days" (even good years and bad years), the fact that she did not have seizures for a short time off medications does not prove that she does not need them. If she is having problems with her seizure medications, the answer may be to switch, rather than stop, her seizure medications.