Epilepsy: A Complete Guide for International Patients in Shanghai

Introduction

Epilepsy is one of the most common neurological disorders in the world, affecting approximately 50 million people globally — around 1% of the world’s population. It is characterized by recurrent, unprovoked seizures caused by abnormal electrical activity in the brain. Despite its prevalence, epilepsy remains widely misunderstood and stigmatized, often preventing people from seeking the care they need.

The good news: with appropriate treatment, approximately 70% of people with epilepsy can achieve seizure freedom. Modern antiseizure medications, surgical options, and neuromodulation therapies have transformed outcomes for many patients.

For international patients and expatriates living in Shanghai, epilepsy presents unique challenges — from navigating medication access and driving regulations to managing seizure risk in a busy urban environment. This guide provides a comprehensive overview of epilepsy, tailored to the needs of the international community in Shanghai.

What Is Epilepsy?

Epilepsy is defined as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures. Practically, this means:

• Two or more unprovoked seizures occurring more than 24 hours apart, or
• One unprovoked seizure with a high probability of recurrence (greater than 60% over the next 10 years), or
• Diagnosis of an epilepsy syndrome

A single seizure triggered by a reversible cause — such as fever, alcohol withdrawal, low blood sugar, or a head injury — is not epilepsy. These are called provoked seizures and require different management.

Types of Seizures

Understanding seizure types is fundamental to epilepsy diagnosis and treatment. The International League Against Epilepsy (ILAE) classifies seizures based on their onset:

Focal Onset Seizures (previously called partial seizures)

Begin in one area of the brain. Symptoms depend on which part of the brain is affected:

• Focal aware seizures: The person remains conscious. May experience unusual sensations, emotions, smells, tastes, or involuntary movements in one part of the body.
• Focal impaired awareness seizures: Consciousness is affected. The person may appear confused, stare blankly, or perform repetitive automatic movements (automatisms) such as lip-smacking, hand-wringing, or walking in circles.
• Focal to bilateral tonic-clonic seizures: A focal seizure that spreads to involve both sides of the brain, resulting in a generalized convulsion.

Generalized Onset Seizures

Involve both hemispheres of the brain from the outset:

• Tonic-clonic seizures (formerly “grand mal”): The most recognized seizure type. Involves sudden loss of consciousness, stiffening of the body (tonic phase), followed by rhythmic jerking movements (clonic phase). Typically lasts 1–3 minutes. May be followed by a period of confusion and fatigue (postictal state).
• Absence seizures (formerly “petit mal”): Brief episodes (5–30 seconds) of staring and unresponsiveness, often with subtle eye blinking. The person resumes normal activity immediately after. Common in children.
• Myoclonic seizures: Sudden, brief muscle jerks, often occurring in the morning shortly after waking.
• Tonic seizures: Sudden stiffening of muscles, often causing falls.
• Atonic seizures (drop attacks): Sudden loss of muscle tone causing the person to collapse.
• Clonic seizures: Rhythmic jerking movements without a preceding tonic phase.

Causes of Epilepsy

Epilepsy has many causes, which are now classified into six categories:

• Structural: Brain abnormalities visible on MRI, including hippocampal sclerosis (the most common cause of focal epilepsy in adults), cortical dysplasia, tumors, stroke, traumatic brain injury, and vascular malformations
• Genetic: Mutations in genes encoding ion channels, receptors, or other proteins critical to neuronal function. Includes Dravet syndrome, Lennox-Gastaut syndrome, and many others.
• Infectious: Neurocysticercosis (tapeworm infection of the brain — a leading cause of epilepsy in developing countries), viral encephalitis, bacterial meningitis, tuberculosis, HIV
• Metabolic: Disorders of metabolism affecting brain function, including pyridoxine deficiency, glucose transporter deficiency
• Immune: Autoimmune encephalitis (e.g., anti-NMDA receptor encephalitis, LGI1 encephalitis) — an increasingly recognized and treatable cause of new-onset seizures
• Unknown: No identifiable cause despite thorough investigation — accounts for a significant proportion of epilepsy cases

Diagnosis

Epilepsy diagnosis requires a careful clinical history, neurological examination, and targeted investigations. A detailed eyewitness account of the seizure is invaluable.

• Electroencephalogram (EEG): Records electrical activity in the brain. Can detect epileptiform discharges (spikes, sharp waves) that support the diagnosis and help classify the epilepsy type. A normal EEG does not exclude epilepsy — many patients require prolonged or sleep-deprived EEG recordings.
• Video-EEG monitoring: Simultaneous video and EEG recording during a seizure provides the most definitive characterization of seizure type and localization. Available at major Shanghai epilepsy centers.
• Brain MRI: High-resolution MRI (epilepsy protocol) is essential to identify structural causes. Should be performed in all patients with new-onset epilepsy.
• Blood tests: Full blood count, metabolic panel, glucose, calcium, liver and kidney function, and specific tests for autoimmune and metabolic causes as indicated.
• Cerebrospinal fluid (CSF) analysis: If infectious or autoimmune encephalitis is suspected.
• Genetic testing: For patients with suspected genetic epilepsy syndromes, particularly children and young adults.
• Neuropsychological testing: Assesses cognitive function and helps localize epileptic focus, particularly in surgical candidates.

Treatment

Antiseizure Medications (ASMs)

Antiseizure medications (formerly called antiepileptic drugs or AEDs) are the cornerstone of epilepsy treatment. The goal is seizure freedom with minimal side effects. Key principles:

• Treatment is typically started after a second unprovoked seizure, or after a first seizure with high recurrence risk.
• Medication choice depends on seizure type, epilepsy syndrome, patient age, sex, comorbidities, and potential drug interactions.
• Start low, go slow — doses are titrated gradually to minimize side effects.
• Monotherapy (a single drug) is preferred; approximately 50% of patients achieve seizure freedom with the first medication tried.
• If the first drug fails, a second drug is tried. Approximately 13% of patients achieve control with a second drug.
• Patients who fail two appropriately chosen and tolerated ASMs are classified as having drug-resistant epilepsy and should be referred to a specialized epilepsy center for further evaluation.

Commonly used ASMs available in China include:

• Levetiracetam (Keppra): Broad-spectrum, well-tolerated, widely used for both focal and generalized epilepsy. Available in China.
• Valproate (sodium valproate): Highly effective for generalized epilepsies. Significant teratogenic risk — must be avoided in women of childbearing potential unless no alternatives exist.
• Lamotrigine: Effective for focal and generalized epilepsy. Requires slow titration to minimize rash risk. Available in China.
• Carbamazepine / Oxcarbazepine: First-line for focal epilepsy. Important pharmacogenomic consideration: the HLA-B*15:02 allele, prevalent in Han Chinese and other Asian populations, is associated with severe skin reactions (Stevens-Johnson syndrome) with carbamazepine. Genetic testing before starting carbamazepine is recommended in Asian patients.
• Topiramate: Broad-spectrum; used for focal and generalized epilepsy. Available in China.
• Lacosamide: Effective for focal epilepsy. Available in China.
• Clonazepam / Clobazam: Benzodiazepines used as adjunctive therapy.
• Newer agents (brivaracetam, perampanel, cenobamate): Availability in China is expanding; CMCS can advise on access.

Epilepsy Surgery

For patients with drug-resistant focal epilepsy, surgery offers the possibility of seizure freedom. Surgical options include:

• Resective surgery: Removal of the epileptic focus (e.g., temporal lobectomy for hippocampal sclerosis). Achieves seizure freedom in 60–70% of carefully selected patients with temporal lobe epilepsy.
• Laser interstitial thermal therapy (LITT): Minimally invasive laser ablation of the epileptic focus. Available at select centers.
• Corpus callosotomy: Disconnection of the two brain hemispheres to prevent seizure spread; used for drop attacks in patients not suitable for resective surgery.
• Hemispherectomy / hemispherotomy: For severe unilateral epilepsy in children.

Surgical candidacy requires comprehensive presurgical evaluation including video-EEG, high-resolution MRI, neuropsychological testing, and often advanced imaging (PET, SPECT, MEG). This evaluation is available at Shanghai’s leading epilepsy centers.

Neuromodulation

For patients who are not surgical candidates or who prefer non-resective options:

• Vagus nerve stimulation (VNS): A device implanted under the skin that delivers regular electrical pulses to the vagus nerve, reducing seizure frequency. Approved in China and available at major centers.
• Responsive neurostimulation (RNS): A brain-implanted device that detects abnormal electrical activity and delivers targeted stimulation to abort seizures. Available at select centers in China.
• Deep brain stimulation (DBS): Electrical stimulation of the anterior nucleus of the thalamus. Available at leading neurosurgical centers in Shanghai.

Dietary Therapies

The ketogenic diet — a high-fat, low-carbohydrate diet — is an evidence-based treatment for drug-resistant epilepsy, particularly in children. Modified Atkins diet and low glycemic index treatment are less restrictive alternatives. Dietary therapy requires close supervision by a neurologist and dietitian. Available at specialized pediatric epilepsy centers in Shanghai.

Living with Epilepsy in Shanghai

Medications

Most commonly used ASMs are available in China, though brand names and formulations may differ from Western markets. Bring a sufficient supply of your current medications when relocating, along with a letter from your neurologist specifying the generic (INN) name and dose. CMCS can assist with medication identification and procurement in Shanghai.

Driving

Chinese law prohibits individuals with epilepsy from holding a motor vehicle driving license. This is a significant practical consideration for expats in Shanghai. Public transport (metro, taxi, ride-hailing apps) is extensive and reliable. Discuss your specific situation with your neurologist.

Safety at Home and Work

• Avoid working at heights, near open water, or with heavy machinery if seizures are not fully controlled
• Take showers rather than baths (drowning risk during a seizure)
• Use safety covers on sharp furniture corners
• Inform trusted colleagues and friends about your epilepsy and what to do during a seizure
• Wear a medical alert bracelet
• Ensure adequate sleep — sleep deprivation is a common seizure trigger
• Limit alcohol consumption

Seizure First Aid

If you witness someone having a tonic-clonic seizure:

• Stay calm. Most seizures end on their own within 1–3 minutes.
• Protect the person from injury — clear the area of hard or sharp objects.
• Gently turn the person onto their side (recovery position) to prevent choking.
• Do NOT restrain the person or put anything in their mouth.
• Time the seizure. Call 120 if the seizure lasts more than 5 minutes, if another seizure follows immediately, if the person does not regain consciousness, or if the person is injured.
• Stay with the person until they are fully recovered.

Women with Epilepsy

Women with epilepsy face specific challenges that require specialist management:

• Contraception: Many ASMs (carbamazepine, phenytoin, topiramate) reduce the effectiveness of hormonal contraceptives. Discuss contraception with your neurologist.
• Pregnancy: Epilepsy and ASMs carry risks during pregnancy. Valproate is highly teratogenic and must be avoided. Lamotrigine and levetiracetam have more favorable safety profiles. Pre-conception counseling with a neurologist is essential.
• Folic acid supplementation: High-dose folic acid (5 mg/day) is recommended for all women with epilepsy who are planning pregnancy.
• Catamenial epilepsy: Seizures that cluster around menstruation due to hormonal fluctuations. Requires specialist management.

Status Epilepticus: A Medical Emergency

Status epilepticus (SE) is defined as a seizure lasting more than 5 minutes, or two or more seizures without full recovery of consciousness between them. It is a life-threatening emergency requiring immediate treatment.

Call 120 immediately if a seizure lasts more than 5 minutes.

Patients with known epilepsy who are at risk of prolonged seizures may be prescribed rescue medication (diazepam rectal gel, midazolam buccal/nasal spray, or lorazepam) for use by caregivers. Discuss rescue medication with your neurologist.

How China Medical Concierge Shanghai (CMCS) Can Help

Managing epilepsy in a foreign country requires consistent specialist care, medication access, and practical support. CMCS provides:

• Specialist matching: Connecting you with experienced neurologists and epileptologists at Shanghai’s leading hospitals, including centers with video-EEG monitoring and surgical epilepsy programs
• Appointment booking: Priority scheduling and full administrative coordination
• Medical interpretation: Professional interpreters for all consultations, EEG studies, and surgical discussions
• Medication access: Guidance on obtaining your prescribed ASMs in China, including newer agents and pharmacogenomic testing (HLA-B*15:02) before starting carbamazepine
• Insurance coordination: Liaising with your international health insurer for investigations, hospitalizations, and surgical procedures
• Women’s health coordination: Facilitating pre-conception counseling and pregnancy management for women with epilepsy
• Emergency support: 24/7 assistance for seizure emergencies and hospital navigation

📩 Contact CMCS today for a free initial consultation.

Frequently Asked Questions

Is epilepsy curable?
Epilepsy is not always curable, but it is highly treatable. Approximately 70% of patients achieve seizure freedom with antiseizure medications. For carefully selected patients with drug-resistant focal epilepsy, surgery can achieve seizure freedom in 60–70% of cases. Some epilepsy syndromes in children resolve spontaneously with age.

Can I drive in Shanghai if I have epilepsy?
No. Chinese law prohibits individuals with epilepsy from holding a motor vehicle driving license. Shanghai’s extensive public transport network and ride-hailing services (DiDi) make car-free living very practical.

Are antiseizure medications available in China?
Yes. Most commonly used ASMs including levetiracetam, lamotrigine, valproate, carbamazepine, oxcarbazepine, topiramate, and lacosamide are available in China. Bring a sufficient supply when relocating and carry a letter from your neurologist with the generic drug name and dose. CMCS can assist with medication procurement.

What should I do if I have a seizure in Shanghai?
If you regain consciousness after a seizure, rest and do not drive. Contact your neurologist. If the seizure lasted more than 5 minutes, or if you are injured, call 120 or have someone take you to the nearest emergency department. CMCS clients can contact our 24/7 emergency line for immediate support.

Is epilepsy covered by international health insurance?
Yes. Epilepsy diagnosis, specialist consultations, EEG studies, brain MRI, and antiseizure medications are typically covered by international health insurance. Coverage for epilepsy surgery and neuromodulation devices varies by policy. CMCS can verify your coverage and manage the authorization process.

I am a woman with epilepsy planning to become pregnant. What should I do?
Pre-conception planning is essential. Consult your neurologist before trying to conceive. Valproate must be avoided if at all possible due to high teratogenic risk. Start high-dose folic acid (5 mg/day). Your neurologist may adjust your medication regimen to optimize seizure control while minimizing fetal risk. CMCS can coordinate specialist pre-conception counseling in Shanghai.