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 the treatment used to stop them.
Continuing seizure activity is not good for either the brain or body. When seizures have not been stopped, the seizures you’re still having might change the 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 the 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 the 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 the 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 the Bureau of Motor Vehicles.
Here is an example of one of many reasons you shouldn’t lie: Suppose you’re the 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 the diagnosis of epilepsy.
4. Take your medication regularly.
The best medicine in the world won’t work if you don’t take it properly. I have the greatest sympathy for people who need to take medication for seizures. When I miss a dose of my antihistamine, the 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 the patient, doctor, or both, get fixated on them and lose sight of the big picture.
A neurology professor summed this up nicely: “Managing a seizure disorder by only watching the blood-levels is like driving a car by only watching the speedometer. Sometimes you need to look up and see where you’re going!”
Obsessing over drug blood-levels can lead to sad consequences. For example, if the blood-level happens to fall within the suggested range of numbers printed on the lab slip, the patient and doctor might conclude that everything humanly possible is already being done. But if the patient is still having seizures, more work is still needed.
It is also unfortunate when the patient and doctor assume that a blood-level outside the “normal range” is bad. Some patients might actually do best on a blood-level that is higher than the printed range, or, alternatively, do just fine on a blood-level below the range. The printed range is just a rough guideline.
6. Keep regular hours.
I know that you are an exciting, vibrant human being. But sometimes it’s in your best interest to behave as if you are a dull person, waking up at the same hour every morning and retiring at the same hour every night. Disruptions in the sleep-cycle can lower the threshold for having seizures. As an example, one man in my practice never achieved perfect seizure control while working swing-shifts, but became perfectly seizure-free when he went on straight day-shifts.
7. Keep records.
In the process of medication adjustment leading to perfect seizure-control, an accurate tally of the numbers of seizures per span of time is an essential tool in judging whether or not you are on the right track. Women should also chart their menstrual periods. Sometimes there is a correlation between seizures and the menstrual cycle.
8. Communicate with your doctor.
The smartest doctors in the world can’t fix problems they don’t know about. If you’re still having seizures or experiencing side-effects from seizure medication, chances are that your doctor would appreciate a phone call about it. The advice you receive will allow you to make better use of your time than if you wait until the next appointment to report problems.
9. Talk to your doctor about pregnancy.
If you’re planning on becoming pregnant, then the time to mention this to your doctor is before you become pregnant. Your medication might need to change in order to optimize your outcome. Once you are pregnant, this option is less available. In any case, you and every other woman of child-bearing potential should take at least 800 micrograms (0.8 milligrams) of folic acid (also known as folate) daily in order to minimize the chance of fetal malformation. Once you discover you are pregnant, you might already be past the time at which the folic acid was most needed. Taking it regularly is the safest course of action.
10. The goal is zero seizures and zero side-effects.
Yes, I know I’m repeating myself, but it’s just that important!