Print out this handy checklist (PDF)
While many seizure medicines are tolerated well, any medicine has the potential to cause side effects. Before you start a new medicine, make sure to learn about the benefits of each medicine (how well it will work for your type of seizures), what side effects may occur, and steps you can take to prevent or lessen some side effects from occurring.
Start educating yourself by printing out a medicine sheet about your AEDs, found at http://www.epilepsy.com/medicine_sheets, if your doctor's office hasn't given you one. Make sure to review the information with your doctor.
Tips for managing medication side effects:
- Record your side effects, either in a journal, or ideally right on your seizure calendar. This will help your doctor know what's happening and when.
- Make note of how bothersome side effects are (for example mild, moderate or severe) and how long they last (a few minutes, 30 to 60 minutes, hours or days at a time, or if it's a constant problem).
- If side effects are happening very frequently or constantly, or are causing problems in your mood, safety or physical functioning, call your doctor. Find out if you can be seen by the doctor or someone at his office, or if you should be seen more urgently.
- If your doctor wants to check a blood test, ask if he or she wants to check a 'trough level', which shows the level of the medicine in your body ust before you take a dose. Sometimes the doctor may want to check a 'peak level', or have blood drawn when the amount of medicine in your system may be at its highest and see how this may be related to your side effects.
- Make sure that you review the way you take the medicine with your doctor or nurse and be consistent each day. Sometimes taking medicine after eating food or adjusting the times of your medicine may make side effects go away.
- If the doctor recommends changing medicines, make sure you set aside enough time to do this safely. Sometimes seizures 'act up' during medicine changes, only to settle down once you reach a good amount of the new medication for you.
- You'll likely not be able to drive if you are having seizures or at risk for more seizures. Make sure to get clear instructions from your doctor about what you can and can't do.
- Often times, AEDs are better tolerated if small changes in dose are made slowly. Talk about this with the doctor in advance as you'll need to plan outpatient visits to make sure you are responding to the changes well.
- If you aren't able to take time for slow medicine changes or just need to get started on a new medicine quickly for some other reason, your doctor may want to choose a medicine that can be started quickly. Remember that any change in medicine will still take time to find the amount that works best for you.
- Talk to your doctor about which medicines are easiest to take. Some AED schedules can get pretty complicated and aggravate side effects. Also complex drug schedules are harder to manage and you'll be more likely to make errors.
- Be honest with your doctor about what side effects you can tolerate and what is just not acceptable. For example, if weight gain is a problem for you, then taking a medicine that's likely to cause further weight gain may not be acceptable to you. If you already have problems with memory, adding a medicine that may make memory worse may not be wise.
- If you notice side effects after you've started changing medicines, develop a plan with the doctor or nurse about what to do. Some side effects go away after a few days or weeks of starting a drug and the doctor may ask you to wait and see how you feel before making any changes.
- Chart your progress – use the seizure diary and/or your journal to keep track of your progress. Note what makes side effects better, what may make them worse and how long they last.
- Don't stop your seizure medicine suddenly and without your doctor's advice. Stopping seizure medicine abruptly can cause serious changes in seizures, mood or behavior.
- If you experience any unexpected or unusual serious side effects, you can report these to the FDA's Medwatch system which helps keep track of medication problems.
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Topic Editor: Patricia O. Shafer, RN, MN. and Steven C. Schachter, MD
Last Reviewed: 7/28/08