1. The goal is zero seizures and zero side-effects.If you are still having seizures or more than minimal side-effects from your anticonvulsant medication, then you have unfinished business. The holy grail of seizure management is to stop them entirely, and to do so without significant side-effects from
treatment used to stop them.
Continuing seizure activity is not good for either
brain or body. When seizures have not been stopped,
seizures you're still having might change
brain in a way that makes it easier for future seizures to occur. Also, people with uncontrolled seizures are more likely to fall and hurt themselves than people without seizures. Moreover, driving a car will probably not be feasible until
seizures have been stopped.
2. Don't blab.
Your medical information is confidential, and you should play your medical cards close to your chest. Don't volunteer information to non-medical people who don't need to have it. Once
information is out, you have no control over how it is used or mis-used. Unfortunately, some individuals still have backwards ideas and attitudes about epilepsy. Don't give them an opening to mess with your life.
3. Don't lie.
If others have a legitimate need to know about your epilepsy, you should stick to
truth, though you shouldn't necessarily add information that is not requested. People with a "need to know" might include your employer, your insurer and
Bureau of Motor Vehicles.
Here is an example of one of many reasons you shouldn't lie: Suppose you're
driver of a car involved in an accident. If you lied to your insurance company about your epilepsy, they might refuse to pay based on your fraudulent application, whether you had a seizure or not!
One escape clause is that if you have had just one lifetime seizure, then it is medically correct to say you don't have epilepsy. A minimum of two seizures is required to establish
diagnosis of epilepsy.
4. Take your medication regularly.
The best medicine in
world won't work if you don't take it properly. I have
greatest sympathy for people who need to take medication for seizures. When I miss a dose of my antihistamine,
only consequence is that my nose runs, but people who miss a dose of seizure medication might pay for it with a seizure.
However, assuming you're human, at some point or another you'll screw up and forget a dose. Work out a plan with your doctor for what to do when that happens.
5. Don't fixate on drug blood-levels.
Don't confuse a tool with a goal. The goal is to have no seizures and no side-effects, not to produce a certain number on a laboratory report. In selected situations, drug blood-levels can be useful tools, but sometimes
patient, doctor, or both, get fixated on them and lose sight of
big picture.
A neurology professor summed this up nicely: "Managing a seizure disorder by only watching
blood-levels is like driving a car by only watching
speedometer. Sometimes you need to look up and see where you're going!"