Choice of department
For patients considered for epilepsy: children, adolescents, and adults may be considered for neurology; infants or pediatric patients may be considered for pediatrics or neuropediatrics. In some hospitals, there are neurologists or pediatricians who have expertise and specialized training in epilepsy, and these epilepsy specialists may be given priority. For patients who are suitable for epilepsy surgery, the above-mentioned physicians will usually present to the patient and family at the appropriate time and recommend or refer to the epilepsy surgeon. Usually, surgical treatment is not the first choice for the treatment of epilepsy. However, in patients who are truly difficult to control with medication and are suitable for surgery, as well as in patients such as young children whose minds are still developing, women who wish to become pregnant, and patients whose quality of life is severely affected and who wish to be completely cured of epilepsy, treatment can be performed at hospitals capable of performing epilepsy surgery.
The consultation process
At the first visit, the doctor will first take a medical history, mainly to try to understand the nature and type of seizures. This is very important. Because patients often lose consciousness during a seizure, it is often difficult for them to recall the details of the seizure during their visit. Therefore, it is necessary to bring someone who has witnessed the seizure to the consultation, or at least to make sure that the witness has been asked about the seizure before the consultation. In addition, the doctor will ask about previous diagnoses and treatments, especially medications. Subsequently, the physician will perform a general physical examination, including neurological examination, and arrange for necessary ancillary tests (e.g., EEG, imaging, blood tests, etc.). In most cases, the doctor may make a definitive diagnosis and recommend starting treatment when the symptomatology is clear and the ancillary tests are adequate. In a few cases, the patient may need temporary dynamic observation and, if necessary, a second visit or even several visits before the diagnosis is finally clarified.
Questions from the doctor
Specialists often ask patients and families the following important questions during their visits. For more effective diagnosis and treatment, patients and family members should consider the following questions carefully before the visit. Questions that are unclear should be asked to a knowledgeable person. To prevent forgetting, it is a good idea to write them down in a book and bring them to the doctor at the time of the visit. If you happen to have a video of the patient’s seizure (for example, a video taken with a home video camera or cell phone), it is helpful to bring it to the doctor as well.
Does the patient (especially in children) have a normal birth history? Was there a difficult birth, asphyxia, intracranial hemorrhage, etc.?
Is the patient’s growth and development abnormal? Is there hypo-intelligence? Is the age of talking or walking later than peers? What is the academic performance? What is the academic performance?
Is there any history of fever and seizures and the age of presentation?
Any previous history of meningitis or severe cranial trauma? (Was there any coma at that time? How long was the coma?)
Are there others in the family with epilepsy or other genetic disorders?
Were there any triggers before the seizure? Was there any lack of sleep, overexertion or stress, excessive alcohol consumption, use of illegal drugs, or other triggers, etc. Did the female patient have the seizure during her menstrual period?
Were the seizures occurred in the waking state or during sleep? Did the attack occur when she first woke up?
What was the state immediately before the onset? Did the attack occur shortly after standing up? Were you exercising at the time?
Was there an aura (a feeling of impending illness) within a few minutes before the onset? What exactly was the aura?
What was the whole process of the attack like? (Describe in as much detail as possible, e.g., was the person able to speak to bystanders during the attack? Which side of the head and eyes are deflected? Which side of the mouth is twitching? Which side of the mouth is twitching? Which hand is doing the groping?)
How long did the seizure last? (seconds? Minutes? (hours?)
What was the patient’s state at the end of the seizure? (confused? Blurred consciousness? Is there any headache or muscle pain? Do you feel tired or fall asleep quickly after the attack? Did you find that you had bitten your tongue or wet your pants? Can the patient recall the seizure afterwards?)
What is the frequency of seizures? (Frequent? (Rarely?)
Have you been seen before? What kind of tests and results have been done? Are you currently taking anti-epileptic medication? (Specific medication name, dosage, and method of administration) What is the effect of the medication? Are there any significant side effects?
Communication between doctor and patient
It is clear that adequate communication between the patient and family and the doctor is essential. However, sometimes doctors and patients do not share the same concerns or ideas. For example, the doctor believes that taking antiepileptic drugs (Western medicine) is the preferred treatment after the diagnosis of epilepsy, while the patient or family members may be worried about the side effects of the drugs and are thinking about other treatments (such as herbal medicine or direct surgery). Without adequate communication, the patient may still follow his or her own ideas and may take many detours or divergent paths.
Therefore, patients and families should strive to: understand the nature and causes of epilepsy. Patients and family members who are newly diagnosed with epilepsy are often psychologically scared or refuse to accept the reality, which is unwise. They should face the reality of why they have epilepsy and what the possible causes are. Once the nature of epilepsy is understood, most patients are able to accept their doctor’s treatment recommendations. Understand the nature of seizures and how they affect daily life. Understandably, it is normal for patients to have a fear of seizures, but at the same time, patients should understand that antiepileptic medications can help control seizures. And, in fact, most patients can lead a normal life after regular treatment. Of course, seizures do affect the patient’s daily life and family to some extent, so it is important to be prepared for this. Understand your doctor’s treatment strategy. Once epilepsy is diagnosed, the doctor will usually begin treatment on a case-by-case basis, but many patients do not understand the options chosen by the doctor. It is important for patients and families to ask and receive explanations for any questions they may have, and only when they truly understand the doctor’s intentions are they likely to cooperate effectively with long-term treatment. Tell your doctor the truth about your real thoughts and questions. For example, epilepsy medication is usually maintained for at least 2 years. If the family is not financially well off and cannot afford the higher cost of the medication, they should tell the doctor at the beginning and the doctor will choose a cheaper medication according to the situation, which is better than being forced to change the medication again during the treatment. Another example is that young female patients who intend to get pregnant and have children in the near future should also tell the doctor in advance, who will give specific guidance on drug selection, pre-pregnancy preparation, and precautions during pregnancy.
About follow-up examinations
First of all, remember to always bring your previous medical records (e.g., inpatient records or outpatient medical record book) as this is the primary basis for your doctor’s understanding of your previous diagnosis and treatment. Do not expect doctors to remember patients, as it is very difficult to remember a specific patient’s condition even with the same treating doctor, let alone changing doctors during a follow-up visit. Second, give the doctor a clear account of the patient’s main conditions since the last visit. This includes seizure control, medication adherence, side effects, and major lab results. It is also important to take the initiative to ask the doctor any questions, even if some of them are sensitive, in an appropriate manner. To ensure effective communication, it is recommended to limit the number of questions to five. If you are afraid of forgetting, you can write the above in a book beforehand and bring it along with you to the consultation.
Finally, make sure that you really understand the doctor’s explanation and recommendations at the follow-up visit. In particular, if you are worried about forgetting the altered treatment plan, you should promptly record it in the book in a way that you can understand.