Being told you have epilepsy is a significant moment. It comes with fear — about future seizures, about driving, about work, about what this means for the rest of your life. It also often comes with relief: finally having a name for what has been happening.
The most important thing to know: epilepsy is highly manageable. Approximately 70% of people with epilepsy achieve complete seizure freedom with the right medication. Many lead entirely normal lives. The 30% with drug-resistant epilepsy face more complex management, but modern neurology has more tools than ever before.
You're not alone. Approximately 600,000–900,000 South Africans live with epilepsy.
What to Expect in the First 3–6 Months
Month 1–2: Your neurologist or GP will identify your seizure type (generalised or focal) and start you on a first-line anti-epileptic drug (AED). Sodium valproate, carbamazepine, or lamotrigine are most commonly first. The dose is titrated gradually to minimise side effects.
Month 2–4: Monitoring bloods (drug levels, liver function, full blood count) will be done to confirm therapeutic levels and check for side effects. Some AEDs take 2–3 months to reach stable therapeutic blood levels.
Month 3–6: First formal review — is the medication controlling seizures? Any troublesome side effects? Your doctor will assess whether the first AED is working. If not, dose adjustment or a switch to a second AED begins.
Important: If you have a seizure on medication, do not stop taking your AED without medical guidance. Abrupt withdrawal can trigger severe rebound seizures or status epilepticus.
Five Questions to Ask Your Neurologist or GP
- What type of epilepsy do I have — focal or generalised? This determines which medication is most appropriate.
- Why might I have developed epilepsy? In SA, causes include head injury, NCC (neurocysticercosis), HIV, or unknown (idiopathic). Understanding the cause affects management.
- What are the driving restrictions? In South Africa, people with epilepsy are legally prohibited from driving until seizure-free for a defined period (typically 12 months). Ask your doctor for the current regulations and documentation requirements.
- Am I on the right medication given my profile? If you are a woman of childbearing potential, sodium valproate should be avoided or used with extreme caution due to teratogenicity (foetal harm). Ask whether a safer alternative is appropriate.
- What should I do if I have a seizure? Get a written seizure action plan — what to do, when to call an ambulance, when status epilepticus is suspected.
How Your Medical Aid Covers Epilepsy
Epilepsy is a Chronic Disease List (CDL) condition. This means all registered open medical aid schemes are legally required to cover a defined set of epilepsy treatments for members who register the condition.
What CDL cover means in practice: - Your AEDs (sodium valproate, carbamazepine, lamotrigine, levetiracetam) are covered from the chronic medication benefit — not from your day-to-day (d2d) savings or above-threshold limit. - GP consultations and neurologist consultations related to epilepsy are covered as specialist visits. - Blood monitoring (drug levels, FBC, LFTs) is covered. - EEG is covered as a diagnostic procedure. - Status epilepticus is a PMB emergency — your scheme must cover emergency treatment regardless of plan.
What to Do About Your Medical Aid Right Now
- Register epilepsy as a CDL condition. Contact your scheme or ask your GP/neurologist to complete a CDL chronic condition application form. Without registration, your AEDs come from your d2d savings — a much smaller pool. The application process typically takes 7–14 working days to activate.
- Check your scheme's CDL AED formulary. Ask your scheme specifically: is levetiracetam on the CDL formulary? Is lamotrigine? These are preferred modern agents with better tolerability than older AEDs. If not on the formulary, your neurologist must submit a clinical motivation for exceptional needs approval before the scheme will fund them.
- Get pre-authorisation for any specialist investigations — including EEG, MRI brain, and neuropsychological testing — before the procedure. Disputes are far harder to resolve after the fact.
- Ask your scheme about driving restriction documentation — some schemes may require notification of driving restrictions that affect risk classification.
- If you are a woman of childbearing potential: notify your scheme and your neurologist immediately. Sodium valproate is highly teratogenic. Your scheme may need to be involved in medication-switching decisions if you are planning pregnancy. This is a time-sensitive clinical and administrative priority.
Do You Need Gap Cover?
For most epilepsy patients on stable, well-controlled treatment: gap cover is useful but not urgent. The primary use case is neurologist shortfall on routine visits.
If your epilepsy is refractory (drug-resistant) or you have experienced status epilepticus: gap cover becomes more important. ICU admissions for status epilepticus carry significant specialist shortfalls that gap cover addresses. The annual gap cover payment limit is approximately R220,000.
SA Support Resources
- Epilepsy South Africa (ESA): 0860 EPILEPSY (0860 374 537) | www.epilepsy.org.za — counselling, support groups, and legal information on driving and employment
- South African Epilepsy Society (SAES): Professional body; specialist referrals
- SADAG (mental health support): 0800 456 789 — epilepsy carries significant depression and anxiety comorbidity
Check your epilepsy cover today → AURA medical aid check
This page is general information about medical schemes. It is not medical advice: speak to a healthcare professional about your own treatment. Medical aid and gap cover advice is given by Eldon de Waal, a Supervised Representative of Approach Administration (FSP 23579).