How do you know that you're getting good epilepsy care? Let me start with one way you cannot tell. Just because you are continuing to have seizures does not necessarily mean that your epilepsy care is deficient. About one-third of people with epilepsy are not controlled by existing medications. However, if your seizures are continuing, if you have bothersome side effects of antiepileptic medications or if the quality of your life, school, work or relations are negatively impacted by your epilepsy, then it might be time to consider whether more could be done. The following indicators of good care are only my opinions, not those of any official body; other healthcare professionals might take a different approach. I have boiled them down to a baker’s dozen (13) points.

Diagnosis of your epilepsy

The most important tool for diagnosis of epilepsy is obtaining a description of the episodes that might be seizures. What do you feel at the start? What happens next? What do others observe you to do? How long does it last? How do you recover? What tends to bring these on or keep them from happening? Point 1.Your doctor should obtain a good description of your episodes, to get a picture of your typical seizures and determine whether they seem like epileptic seizures. Your general medical history and family history also are relevant to diagnosis, because you may have medical or genetic conditions that predispose you to seizures. Point 2. Your doctor should take a general medical and family history. The neurological physical exam may indicate abnormal strength, coordination, sensation or reflexes in a part of the body, suggesting a problem in the corresponding part of the brain linked to that part of the body. This may lead to clues to where and why the seizures originate in the brain. Point 3. Your doctor should perform a neurological physical examination.

Tests results alone cannot prove or disprove the existence of epilepsy, but they can help to clarify the diagnosis. The two most important tests are EEG and MRI. An EEG (electroencephalogram, brainwaves) measures the electrical activity of the brain. Brain regions that give rise to seizures may show high voltage discharges called spikes (as illustrated in the figure), sharp waves or spike-waves.

The EEG also can exhibit diffuse or focal slowing of the normal EEG frequencies, which is a somewhat nonspecific indicator of something being wrong with that part of the brain. EEGs are usually taken between seizures, and they are normal half of the time among people with definite epilepsy. If an EEG shows an abnormality then it is informative, but a normal EEG does not rule out epilepsy. Point 4. Sometime in your evaluation, you should have an EEG. Neuroimaging tests such as MRIs and CT scans portray physical structure. MRI is a better and more expensive test, but sometimes a CT scan can suffice. Again in about half of cases, brain neuroimaging reveals an underlying structural abnormality that could cause seizures: scars from trauma, stroke (as shown in the figure), prior bleeding, infection, abnormal blood vessels, tumors or birth defects in the brain called dysplasias. Point 5. Sometime in your evaluation, you should have an MRI or CT scan. EEGs, MRIs and CTs need not be done at every visit. Multiple EEGs or prolonged EEGs can be done to try to “catch” spikes. MRIs and CT scans may only be necessary once in a lifetime. However, if a problem is found, then an individualized schedule of follow-up exams should be established. A repeat MRI may be warranted if the seizure pattern deteriorates.

Blood tests can be useful to verify that your blood counts, salt levels, liver and kidney functions are not being adversely affected by the seizure medicines, and also to measure blood levels of the drug. There is no set schedule for performing blood tests, since the need varies with the clinical circumstances, the medicines being used and how long blood tests have been stable. Frequency of obtaining blood tests can range from weekly to yearly tests. Some doctors argue that blood tests do not help forestall complications, and are not necessary at all, but my own opinion is that they can be useful. Point 6. If you are on anti-seizure medicines, you should have occasional blood tests.

Some epilepsy specialists obtain other tests in particular circumstances. An electrocardiogram (ECG, EKG) can reveal heart rhythm problems or problems with the heart’s electrical conduction system. These can be risk factors for heart complications of having seizures or taking seizure medicines. A spinal tap, also called a lumbar puncture, may be done if infectious meningitis, bleeding or tumor is suspected as a cause for seizures. Good practice does not require these tests for everyone.

Treatment

Not every seizure requires treatment. Some produce only mild sensations or movements that are less bothersome than are side effects of medicines. A first generalized seizure with an otherwise normal history, exam, EEG and MRI commonly is not treated, since a second follows only about a third of the time. Some seizures are provoked by causes that can be eliminated, such as alcohol, low blood sugar or low oxygen, for example with sleep apnea. In these cases, the underlying condition should be treated and anti-seizure medicines may not be required. Point 7. Your doctor should look for and treat the underlying cause of your seizures, recognizing that at least half of the time, no cause can be identified, and in other cases a known cause cannot be treated.

No one medicine is right for every patient and every seizure type – there are over 20 from which to choose. There is no way to give a formula for which medicine to use to treat seizures. Each medicine has a profile of likely effectiveness against various types of seizures, side effects, convenience (for example, once a day or three times a day), years of accumulated experience and costs. In general, the newer seizure medicines have better side effect profiles than do the older ones, such as Dilantin (phenytoin) and phenobarbital. Good practice does not consist of choosing any one specific medicine, but of considering the factors of effectiveness, side effects, convenience and cost in relation to your individual needs. Perhaps you are bothered by a potential side effect of weight gain or of worsening memory. If so, then certain seizure medicines are not for you. Point 8. Anti-seizure medicines should be chosen individually to match your condition and needs. One size does not fit all.

If an anti-seizure medicine is not controlling your seizures, your doctor should be open to trying another. Be aware that medication changes can be stormy, with withdrawal seizures from removing the old medicine and side effects from the new medicine, so don’t change unless there is a good reason to do so. At some point, a decision may be made that medicines in general are not working. Nonmedical therapies may then have a role, including vagus nerve stimulation or brain surgery. Point 9. If treatment isn’t working, your doctor should be open to trying something else, either a different medicine or non-medical treatments.

Safety

Epilepsy is associated with risks, including vehicle crashes, falls, burns, drowning, pregnancy problems, medication side effects and numerous others. Sudden unexpected death in epilepsy (SUDEP) is a subject for a special discussion. You should not expect a full review of every possible risk, or even all the ones listed here. But you should be given enough information about risks so that you can apply common sense and good judgment to your activities. Point 10. Your medical team should discuss the important risks of epilepsy with you. After you hear the facts, it becomes your task to act safely.

Associated Conditions

Epilepsy often is accompanied by other conditions, called co-morbidities. The most prevalent and important of these is depression. Depression can result from limits and uncertainties imposed by epilepsy, but depression also can be due to effects of anti-seizure drugs or biological neurotransmitter changes in the brains of people experiencing seizures. Depression should be recognized and treated. Other co-morbidities can include psychosis with hallucinations and delusions, attention deficit disorder and cognitive (thinking, memory) impairment. Point 11. Your doctor should be alert for co-morbid conditions of epilepsy, such as depression, and treat them when necessary.

Referral

Most people with epilepsy are treated by their primary care physician, including pediatricians. If seizures are persisting, if side effects of medicines are a problem, if quality of life is low because of epilepsy, if you are or wish to become pregnant then referral to a specialist with experience in epilepsy is a good idea. You can find a list of multidisciplinary epilepsy center at www.naeclocator.org/locator/default2.asp, courtesy of the National Association of Epilepsy Centers. Doctors who are members of the premier professional organization, the American Epilepsy Society, can be found geographically at www.aesnet.org/go/find-a-dr. Point 12. If your treatment is not working, seek out an epilepsy specialist.

Conclusion

If your doctor does not cover each of the points in this article, it does not mean that she or he is a bad physician or derelict in duty. There is only so much time in a clinic visit, and talking about one thing may preclude time to discuss another. Epilepsy specialty nurses can provide invaluable information to supplement the clinic visit. Written materials can be educational, and information is increasingly available on-line at such sites as www.epilepsy.com. Become more knowledgeable about your epilepsy and partner with your medical team to achieve the highest possible level of care. Point 13. Become knowledgeable and contribute to your own epilepsy care.

SUMMARY POINTS FOR GOOD EPILEPSY CARE

1. Your doctor should obtain a good description of the episodes
2. Your doctor should take a general medical and family history.
3. Your doctor should perform a neurological physical examination.
4. Sometime in your evaluation, you should have an EEG
5. Sometime in your evaluation, you should have an MRI or CT scan
6. If you are on anti-seizure medicines, you should have occasional blood tests.
7. Your doctor should look for and treat the underlying cause of your seizures,
8. Anti-seizure medicines should be chosen individually to match your condition and needs
9. If treatment isn’t working, your doctor should be open to trying something else
10. Your medical team should discuss the important risks of epilepsy with you
11. Your doctor should be alert for co-morbid conditions of epilepsy
12. If your treatment is not working, seek out an epilepsy specialist.
13. Become knowledgeable and contribute to your own epilepsy care.