Learning objectives
- Define epilepsy, seizures, status epilepticus and common neuropsychiatric complications of HIV.
- Differentiate epileptic seizures from mimics and identify reversible precipitants.
- Perform an integrated neurological, psychiatric, medical, medication and safeguarding assessment.
- Provide first aid and emergency treatment for convulsive status epilepticus.
- Explain long-term antiseizure treatment, adherence, monitoring, pregnancy issues and interactions with antiretroviral therapy (ART).
- Recognise depression, anxiety, psychosis, delirium, HIV-associated neurocognitive disorder, substance use and suicide risk in people living with HIV.
1. Definitions and why the conditions overlap
| Term | Practical definition | Clinical implication |
|---|---|---|
| Seizure | A transient occurrence of signs or symptoms caused by abnormal excessive or synchronous neuronal activity in the brain. | A single seizure is not automatically epilepsy; look for provoking causes. |
| Epilepsy | A disease of the brain defined by recurrent unprovoked seizures, one unprovoked seizure with a high recurrence risk, or an identified epilepsy syndrome. | Confirm the diagnosis before exposing a patient to years of medicine and stigma. |
| Status epilepticus | A seizure lasting about 5 minutes or longer, or repeated seizures without recovery of consciousness. | Treat as an emergency; neuronal injury, hypoxia, acidosis and aspiration can develop rapidly. |
| HIV-associated neurocognitive disorder | A spectrum of cognitive, motor and behavioural impairment related to HIV after excluding other causes. | Assess function, adherence, depression, delirium, opportunistic infection and medication effects. |
| Delirium in HIV | Acute fluctuating disturbance of attention and awareness caused by infection, metabolic disease, drugs, withdrawal or CNS pathology. | Find and treat the medical cause; do not label it as primary psychosis. |
Epilepsy and HIV can interact in both directions. Seizures may result from opportunistic infection, stroke, tumour, hypoglycaemia, electrolyte disturbance, drug toxicity, withdrawal or immune reconstitution. Depression, anxiety, stigma, sleep loss, substance use and cognitive impairment can worsen seizure control and ART adherence. Conversely, some antiseizure medicines and ART can produce neuropsychiatric adverse effects or clinically important pharmacokinetic interactions.
2. Classifying seizures at the bedside
Focal-onset seizures
Symptoms begin in one network: a rising epigastric sensation, déjà vu, fear, unilateral jerking, sensory change, speech arrest or forced head/eye deviation. Awareness may be preserved or impaired. A focal seizure may spread bilaterally and become a tonic-clonic seizure. A postictal focal deficit (Todd paresis) can mimic stroke.
Generalised-onset seizures
Both hemispheres are involved from onset. Generalised tonic-clonic seizures cause loss of consciousness, stiffening, rhythmic jerking, cyanosis or noisy breathing, tongue biting and postictal confusion. Absence seizures cause brief staring with abrupt recovery; myoclonic seizures cause lightning-like jerks, often after awakening; atonic seizures cause sudden loss of tone.
Important mimics
- Syncope, including cardiac arrhythmia or orthostatic hypotension.
- Psychogenic nonepileptic (functional/dissociative) seizures.
- Hypoglycaemia, panic attacks, migraine, sleep disorders and movement disorders.
- Rigors, dystonia, tetany, intoxication or withdrawal.
Features supporting epileptic generalised convulsion include abrupt onset, stereotyped episodes, lateral tongue injury, cyanosis, witnessed tonic-clonic activity and a postictal period. No single feature is definitive. Video, witness history and, when indicated, EEG or video-EEG are valuable.
3. First assessment after a seizure
Immediate ABCDE
- Airway: place the patient in the recovery position when safe, suction secretions, remove dentures if loose and prepare airway support.
- Breathing: give oxygen for hypoxaemia, monitor respiratory rate and saturation; avoid putting anything in the mouth.
- Circulation: check pulse, blood pressure, temperature, capillary refill and obtain IV access.
- Disability: check bedside glucose immediately, pupils, Glasgow Coma Scale and focal deficit.
- Exposure: look for trauma, fever, meningism, rash, pregnancy, medication patches and signs of poisoning or withdrawal.
Check glucose and correct severe hypoglycaemia according to local emergency protocol. Give thiamine before glucose when severe alcohol dependence or malnutrition is likely, without delaying life-saving glucose. Treat fever, sepsis, electrolyte disturbance, eclampsia or poisoning specifically.
Focused history
- What happened before, during and after the event? Obtain a witness account or phone video where available.
- First seizure or known epilepsy? Previous status, childhood seizures, head trauma, stroke, CNS infection or family history?
- Missed antiseizure medicine, vomiting, sleep deprivation, alcohol or stimulant use, fever or new medicines?
- HIV status, ART regimen, CD4/viral-load history, recent opportunistic infection, TB treatment or immune-reconstitution symptoms?
- Pregnancy possibility, contraception, menstrual pattern and safety-sensitive work such as driving or operating machinery?
Investigations
Choose tests based on the clinical question: glucose, full blood count, electrolytes (including sodium, calcium and magnesium), renal and liver function, pregnancy test, toxicology when relevant, ECG for syncope/arrhythmia, and antiseizure drug levels when a level is interpretable and will change management. In a person with HIV, consider CD4/viral load, blood cultures and targeted tests for meningitis, cerebral toxoplasmosis, cryptococcosis, TB, malaria, bacterial infection or neurosyphilis according to symptoms and local prevalence. Brain imaging and lumbar puncture require assessment for raised intracranial pressure and focal lesions; seek senior/neurology/infectious-disease advice.
EEG supports classification but a normal interictal EEG does not exclude epilepsy. MRI is preferred for structural epilepsy when available; CT is appropriate urgently for trauma, acute focal deficit, suspected haemorrhage or mass effect.
4. Convulsive status epilepticus: an emergency algorithm
First-line benzodiazepine
Use one protocol-appropriate option, with airway equipment ready:
- Lorazepam: 0.1 mg/kg IV (usual adult 4 mg), may repeat once after 5–10 minutes; maximum commonly 8 mg in the initial treatment.
- Diazepam: 10 mg IV slowly in adults, repeat once if needed; if no IV access, rectal diazepam or buccal/intranasal midazolam may be used according to local protocol.
- Midazolam: 10 mg buccal/intranasal or an age/weight-based IM dose where recommended.
Watch for respiratory depression, especially with alcohol, opioids or other sedatives. If seizures continue after an adequate benzodiazepine dose, do not keep repeating small doses indefinitely.
Second-line antiseizure loading
Follow local availability and senior advice. Common options include IV levetiracetam 60 mg/kg (maximum 4,500 mg), IV sodium valproate 40 mg/kg (maximum 3,000 mg) or IV phenytoin/fosphenytoin using a weight-based protocol and cardiac monitoring. Avoid valproate in pregnancy or in people who may become pregnant unless a specialist judges that benefits outweigh risks and safer options are unsuitable. Phenytoin has important arrhythmia, hypotension and interaction risks.
Refractory status
Persistent seizures require ICU/anaesthetic management, airway control, continuous EEG where available and infusion therapy according to a specialist protocol. Look again for hypoglycaemia, sodium abnormality, infection, toxicology, non-convulsive status and an intracranial lesion.
5. Long-term epilepsy management
When to start treatment
Start an antiseizure medicine after confirmed epilepsy or after an individual risk–benefit discussion following a first unprovoked seizure with high recurrence risk. Consider seizure type, EEG/imaging, occupation, driving, pregnancy potential, comorbidity, access and adherence. One medicine at an effective tolerated dose is preferred; review the diagnosis if treatment fails.
| Medicine | Typical educational adult starting/titration example | Major cautions and monitoring |
|---|---|---|
| Levetiracetam | Often 500 mg orally twice daily; increase by 500 mg twice daily at intervals to a usual maximum of 1,500 mg twice daily, adjusted for renal function. | Somnolence, dizziness, irritability, aggression or depression; ask about mood and suicidal thinking. Few pharmacokinetic interactions, but monitor adherence and renal function. |
| Lamotrigine | Start low and titrate slowly: commonly 25 mg daily for 2 weeks, then 50 mg daily for 2 weeks, then gradual increases. The target depends on seizure type and interacting medicines. | Rash can be life-threatening (SJS/TEN); stop and urgently assess a significant rash or mucosal lesions. Valproate greatly reduces clearance and requires a slower titration. |
| Carbamazepine | Often 100–200 mg once or twice daily, increasing gradually to a usual 800–1,200 mg/day in divided doses when indicated for focal seizures. | Hyponatraemia, diplopia, ataxia, leukopenia, hepatic injury, rash/SJS and many CYP interactions. Avoid in absence or myoclonic epilepsy; consider HLA risk according to ancestry and local guidance. |
| Sodium valproate | Commonly 10–15 mg/kg/day in divided doses, increased cautiously; specialist maximum and formulation vary. | Weight gain, tremor, thrombocytopenia, hepatotoxicity, pancreatitis and major teratogenic/neurodevelopmental risk. Avoid in pregnancy and those who may become pregnant unless specialist-led exceptional use. |
| Phenytoin/phenobarbital | Use when locally indicated and with protocol-based loading/maintenance or specialist supervision. | Non-linear kinetics, sedation, gingival hyperplasia, bone disease, rash and numerous interactions. Phenobarbital is highly sedating and enzyme-inducing. |
Doses vary by age, renal/hepatic function, formulation, seizure type and national protocol. Titrate gradually, do not stop abruptly, and provide a missed-dose plan. Check pregnancy status and contraception; enzyme-inducing medicines can reduce hormonal contraceptive efficacy.
Adherence, lifestyle and safety
- Explain that seizure freedom is the goal, not merely a lower count. Use a pill box, treatment supporter or clinic reminder when acceptable.
- Sleep regularly, avoid binge alcohol and recreational stimulants, treat fever promptly and maintain hydration and meals.
- Discuss driving, swimming alone, heights, open fires, machinery and night work according to Ugandan law and local policy.
- Teach family seizure first aid: protect from injury, turn to the side, time the seizure, do not restrain and do not put objects in the mouth; call emergency help if it lasts 5 minutes, repeats, causes injury, occurs in pregnancy or breathing does not recover.
6. Mental and behavioural disorders associated with HIV
People living with HIV may experience distress from diagnosis, stigma, poverty, disclosure concerns, relationship conflict, sexual-health worries and chronic illness. Brain infection, inflammation, opportunistic disease, ART adverse effects and substance use can also directly affect mood, cognition and behaviour. Ask about mental health routinely and privately, using non-judgemental language.
| Presentation | Clues and differential diagnosis | First clinical actions |
|---|---|---|
| Depression | Persistent low mood or loss of interest, hopelessness, sleep/appetite change, fatigue, poor concentration and guilt. Distinguish from anaemia, hypothyroidism, infection, ART effects and grief. | Ask directly about suicide, self-neglect, violence and access to means; assess function, adherence and support; offer psychosocial care and treat medical causes. |
| Anxiety/panic | Worry, autonomic symptoms, fear of disclosure or progression, panic and avoidance. Exclude hypoxia, anaemia, thyroid disease, stimulant use and medication effects. | Validate, teach grounding/breathing, offer counselling/CBT-based care, and make a safety plan. |
| Psychosis or mania | Hallucinations, delusions, disorganisation, severe agitation, decreased need for sleep, grandiosity or risky behaviour. Consider delirium, CNS opportunistic infection, steroids, efavirenz or substance use. | Assess attention and consciousness, glucose, fever, neurological signs and immediate risk; manage agitation safely and arrange urgent medical/psychiatric assessment. |
| HIV-associated neurocognitive disorder | Slowed thinking, impaired memory, executive dysfunction, apathy, motor slowing or loss of function. Depression, delirium, substance use and CNS infection can mimic it. | Collateral history, functional assessment, medication review, neurological exam, ART review and investigation for reversible causes. |
| Substance use | Alcohol, cannabis, stimulants, opioids or sedatives may worsen adherence, seizures, mood, psychosis and sexual risk. | Use brief intervention, withdrawal precautions, harm-reduction and referral; do not moralise. |
7. Suicide and safeguarding assessment
Ask privately and directly: “Have you wished you were dead?” “Have you thought about killing yourself?” “Do you have a plan, access to the means, or a time in mind?” Explore previous attempts, intoxication, psychosis, severe pain, violence, pregnancy/postpartum status, children or dependants, protective relationships and willingness to accept help. Do not leave a high-risk patient alone; remove immediate means where feasible, involve senior staff and use the local emergency/referral pathway.
8. ART, antiseizure medicines and psychotropic interactions
- Obtain the exact ART, antiseizure and other medicine list, including traditional/herbal products. Never assume that “ARVs” is one medicine.
- Enzyme inducers such as carbamazepine, phenytoin and phenobarbital can lower concentrations of several antiretrovirals, including integrase inhibitors and boosted protease-inhibitor regimens, risking virological failure.
- Some ART, especially efavirenz in susceptible individuals, can cause vivid dreams, insomnia, dizziness, depression or psychosis-like symptoms; distinguish adverse effects from opportunistic disease and do not stop ART without HIV-clinic input.
- Lamotrigine, levetiracetam and valproate have different interaction profiles; check an up-to-date interaction database, Ugandan HIV guideline and pharmacist advice before changing therapy.
- Rifampicin-containing TB treatment is a major inducer and may alter ART and psychotropic concentrations. Coordinate HIV/TB/neurology care.
- Use caution with QT-prolonging combinations, sedatives, alcohol and opioids. Monitor ECG or drug levels when clinically indicated.
9. Integrated care plan for a person living with HIV and epilepsy
- Stabilise the acute event and exclude hypoglycaemia, infection, trauma, pregnancy complications, toxicity and CNS disease.
- Confirm the seizure diagnosis and classify it; avoid chronic antiseizure treatment for an unconfirmed mimic.
- Review ART, adherence, CD4/viral load, TB/cryptococcal/toxoplasma risk, renal/hepatic function and all other medicines.
- Screen depression, anxiety, psychosis, cognition, alcohol/substance use, suicide risk, domestic violence and social support.
- Select the simplest compatible antiseizure regimen; educate on adverse effects, pregnancy and contraception, missed doses and seizure first aid.
- Set a coordinated follow-up date and define emergency return symptoms. Document who is responsible for HIV, neurology and mental-health follow-up.
10. Clinical cases
Quick self-test
- When does a convulsion meet the practical treatment threshold for status epilepticus?
- Name four reversible seizure precipitants that should be assessed in a person with HIV.
- Why should a normal EEG not be used alone to exclude epilepsy?
- Which antiseizure medicines are important enzyme inducers that can compromise some ART regimens?
- List the essential components of an HIV-related suicide assessment.
Answers
- About 5 minutes of continuous convulsive activity or repeated seizures without recovery of consciousness.
- Examples: hypoglycaemia, electrolyte abnormality, CNS opportunistic infection, fever/sepsis, medication toxicity or withdrawal, alcohol/stimulants, sleep deprivation and non-adherence.
- Interictal epileptiform discharges may be absent between seizures; diagnosis rests on history, examination, witness/video information and appropriate investigations.
- Carbamazepine, phenytoin and phenobarbital are major inducers; always check the exact ART interaction.
- Suicidal thoughts, intent, plan, access to means, timing, previous attempts, intoxication/psychosis, protective factors, dependants, immediate safety and a documented referral/supervision plan.
Key take-home messages
- A seizure is a symptom; epilepsy requires a careful diagnosis and classification.
- Convulsive status epilepticus is time-critical: airway, glucose, benzodiazepine, second-line loading and senior/ICU support.
- In HIV, seizures and mental symptoms may reflect opportunistic infection, metabolic disease, ART effects, interactions, substance use or primary disorders.
- Screen depression, suicide, psychosis, cognition and adherence routinely and privately.
- Coordinate HIV, neurology, mental-health, pharmacy and social care; never change ART or antiseizure treatment casually.
References and further reading
- World Health Organization. Epilepsy and seizures: mhGAP evidence-based recommendations: WHO mhGAP epilepsy resource.
- World Health Organization. Antiseizure medicines for management of epilepsy in adults and children: WHO recommendation.
- World Health Organization. mhGAP Intervention Guide, version 2.0: WHO mhGAP-IG.
- World Health Organization. Integration of mental health and HIV interventions: WHO IRIS resource.
- Uganda Ministry of Health. Consolidated Guidelines for the Prevention and Treatment of HIV and AIDS in Uganda, 2022: Uganda HIV guidelines.
- Uganda Ministry of Health. Uganda Clinical Guidelines (current facility edition): Uganda Clinical Guidelines.
