IMPORTANT QUESTIONS TO ASK YOUR PHYSICIAN.
Understanding basic epilepsy facts and terminology is important in the management your epilepsy.
Do I really have seizures?
Epilepsy means that you have more than one seizure on more than one occasion. Seizures can be difficult to diagnose because they donít usually occur in the presence of your doctor. Even then, it is difficult to be certain of what is going on in the brain without the use of the appropriate diagnostic tools. Seizures are often confused with other medical conditions such as disturbances in the rhythm of the heartbeat, certain types of sleep disorders, panic attacks, breath-holding spells in children, psychogenic seizures due to certain psychological problems and numerous other conditions. Be sure that your physician has reached a firm diagnosis and can confirm it with the appropriate tests.
What type of seizures do I have?
There are many types of seizures. Different types of seizures respond differently to different kinds of medicines. For example, particular types of generalized seizures may worsen if treated with certain medicines for the treatment of partial seizures. Ask your doctor how accurate your seizure diagnosis is and what his or her considerations were in choosing a particular antiepileptic medication.
What is an epilepsy syndrome and which syndrome do I have?
An epilepsy syndrome is defined by a series of symptoms indicating the type of seizure, the age of onset, and many other factors. The precise diagnosis of an epilepsy syndrome is important in predicting what is likely to happen to the patient and in planning the appropriate treatment.
What is the cause of my epilepsy?
There are many causes of epilepsy. For example, heredity, traumatic brain injury, infection and tumors are just a few of the causes of epilepsy. Your physician may decide to treat the seizures differently depending upon the cause. For example, seizures caused by a brain tumor are best treated by removing the tumor with epilepsy surgery when possible, but if your epilepsy is caused by a childhood infection, chances are you will be treated with antiepileptic medicine. In many cases however, a precise cause cannot be found.
What is my treatment plan in detail?
It is important for you to be involved in managing your epilepsy. You should know your epilepsy seizure type, your epilepsy syndrome, and have a clear understanding of your treatment plan. The details of your plan may include dosing of the medicine, the time of day when medicine should be taken, what diagnostic tests have been done and will need to be done, when will you next be evaluated, and whether or not you are a candidate for epilepsy surgery.
What is an epileptologist?
Physicians come with varying degrees of training. A primary care doctor (family practice, pediatrics, internal medicine) specializes in treating the patient as a whole, looking at all of your medical problems and following them over a long period of time. Sometimes a patient needs to see a specialist such as a neurologist or an orthopedist. These doctors have taken a residency and treat a broader range of problems within a specific disease group. For example, a general neurologist, takes four years of residency (including the one year of general medicine) and treats epilepsy, stroke, headache, back pain, infections of the central nervous system, muscle weakness, peripheral nerve injuries, and others. An epileptologist is considered a sub specialist. He or she is a general neurologist who has taken at least an additional two years of specialized training in epilepsy and treats only epilepsy.
When should I seek a second opinion?
Ordinary cases of epilepsy respond to ordinary doses or ordinary medicines. If your seizures have not been brought under control, either the diagnosis is wrong, the treatment is wrong, or there is some problem in carrying out the treatment. If you see a family doctor, and you are continuing to have seizures, you should certainly ask for another opinion after three months. If you are seeing a neurologist, and the seizures have not been brought under control after 9 to 12 months, then you should insist upon another opinion at a specialized epilepsy center with an epileptologist.
Should I seek specialized care if I am a woman with epilepsy and of childbearing age?
Women with epilepsy and their physicians need to pay special attention to birth control, pregnancy planning, management through pregnancy and delivery, and avoidance of birth defects. If your doctor is not accustomed to treating women with epilepsy who are of childbearing age or pregnant, request a referral to someone who is.
Do I need a referral to see an epilepsy specialist?
In general, no, you do not need a referral. Most epilepsy centers prefer to see patients referred by primary care doctors. If you seek out an epilepsy center on your own, in general you will be welcome, but the epilepsy center will want to work with a primary care doctor or neurologist to be sure that you are cared for by the appropriate team.