Epilepsy And Employment

Overview

Epilepsy is a condition where a person has repeated seizures. A seizure is a sudden, temporary change in how the brain works, caused by a burst of unusual electrical activity. Seizures can look very different from person to person — some people briefly 'go blank', while others fall and shake. Many people with epilepsy work full-time in all kinds of jobs. This article looks at how epilepsy can affect work, and how to get the support you need to do your job safely and well.

Yes. Epilepsy is common — roughly 1 in 100 people in the UK, and around 50 million people worldwide, live with it. So if you have epilepsy, you are far from alone, and most employers will have dealt with similar situations before.

Epilepsy can start at any age. It is often first diagnosed in children and in people over 60. It affects men and women about equally, and people of all jobs, backgrounds and abilities. Some types of epilepsy run in families, but most people with epilepsy have no relative with it.

Symptoms

Common symptoms

• Tonic-clonic seizures (sometimes called grand mal): the person stiffens, falls, shakes and is confused afterwards.
• Focal seizures: a change in awareness, strange feelings, a 'rising' feeling in the stomach, unusual smells or tastes, or a strong sense of déjà vu.
• Absence seizures: brief 'switching off' for a few seconds, sometimes mistaken for daydreaming.
• A warning feeling (aura) before some seizures — for example a smell, a feeling of fear or a tingling sensation.
• After a seizure: tiredness, headache, confusion, muscle aches, or needing to sleep.
• Memory problems, tiredness or low mood between seizures for some people.

Symptoms in children

• Brief staring spells that can look like daydreaming.
• Sudden jerks, head drops or body stiffening.
• Seizures during sleep or just after waking.
• Bedwetting or a sudden loss of skills in a young child — always worth checking with a doctor.

Symptoms in older adults

• Seizures caused by other conditions such as strokes, memory problems or brain infections.
• Confusion or 'funny turns' that are not always recognised as seizures at first.
• Seizure medicines may need extra care because of other medicines and health conditions.

Causes

Main causes

• In many people the cause is not known, even after tests.
• Genes — some types of epilepsy run in families.
• Head injury or injury to the brain at birth.
• Stroke, a brain tumour or bleeding in the brain.
• Infections of the brain such as meningitis or encephalitis.
• Problems with how the brain developed before birth.
• Some people have seizures triggered by lack of sleep, alcohol, flashing lights or illness, even if the underlying cause is unknown.

Risk factors

• A close family member with epilepsy.
• A previous head injury or brain infection.
• A stroke or other condition affecting the brain.
• Certain genetic conditions or developmental differences.
• Sleep deprivation, heavy alcohol use and stress can make seizures more likely in someone who already has epilepsy.

When to see a doctor

See a doctor urgently if:

• You have had a seizure and it was your first one — get medical advice the same day.
• Your seizures are becoming more frequent or different from usual.
• You are pregnant or planning a pregnancy and take seizure medicine.
• You feel unsafe at work because of your seizures and need advice quickly.

Book a routine appointment if:

• Your seizures are not fully controlled and you want to review your treatment.
• You are worried about how your epilepsy might affect a job, shift work or a job offer.
• You feel anxious, low or overwhelmed about managing epilepsy at work.
• You need a letter or medical advice for your employer or occupational health team.

Diagnosis

A doctor will ask in detail about what happened before, during and after your seizures. Descriptions from people who saw the seizure are very helpful — this is often more useful than any test. Your doctor will also ask about your health history and may arrange tests to confirm the diagnosis and rule out other causes.

Tests that may be done

• A full medical history and a description of the seizure from you and someone who saw it.
• An EEG (electroencephalogram) — a painless test that records the brain's electrical signals using small pads on the scalp.
• A brain scan, usually an MRI, to look at the structure of the brain.
• Blood tests to check for other causes, such as low blood sugar or salt levels.
• Sometimes an ECG (heart tracing), because some heart problems can look like seizures.
• In some cases, a longer EEG recording over days, or a video of a seizure.

What to expect at your appointment

Getting a diagnosis can take a little time, and sometimes tests are normal even when someone does have epilepsy. Your doctor may refer you to a specialist (a neurologist) or an epilepsy nurse. Once the type of epilepsy is clearer, treatment and advice can be tailored to you — including advice about work, driving and safety.

Treatment

Treatment aims to stop or reduce seizures while keeping side effects to a minimum. Around 7 in 10 people become seizure-free with the right treatment. Treatment is chosen based on the type of epilepsy, your age, whether you might become pregnant, and your lifestyle — including your job.

Self-care at home

• Take your medicine regularly and at the same times each day — missed doses are a common cause of seizures.
• Keep a simple seizure diary, including date, time, what happened and how you felt — this helps your doctor and can be useful at work.
• Protect your sleep, especially if you work shifts or nights — talk to your employer about reasonable adjustments if you need them.
• Limit or avoid alcohol, as it can trigger seizures and interfere with medicine.
• Learn your own warning signs and triggers, and tell a trusted colleague what to do if you have a seizure.
• Ask your pharmacist before starting any new medicine, including over-the-counter remedies, to check it is safe with your seizure medicine.
• Wear or carry medical ID if your seizures are not fully controlled.

Medical treatments

The main treatment is anti-seizure medicine, prescribed by a specialist or your GP. There are many types, and the right one depends on the kind of seizures you have, your age, your general health and whether you could become pregnant. Your doctor will usually start with one medicine at a low dose and adjust slowly until seizures are controlled or side effects are a problem. Regular reviews are important. If seizures continue, other options include trying a different medicine, adding a second medicine, or referral to a specialist centre. Some people are offered a special medical diet supervised by a specialist team, or small implanted devices, for certain types of epilepsy. Never stop or change seizure medicine suddenly on your own — this can cause serious seizures.

When is surgery considered?

For some people whose seizures do not respond to medicines, brain surgery can be considered. It is only suitable when tests show that seizures start in one clearly identified part of the brain, and it is always carefully discussed with a specialist team. Many people who have this surgery see a big reduction in seizures.

Living with this condition

Most people with epilepsy work, drive (once they meet the safety rules in their country), study and raise families. At work, the main practical issues are safety, shift patterns, tiredness and what — and when — to tell people. Planning ahead, keeping a seizure diary and knowing your triggers all help you feel more in control. It can also help to agree a simple plan with your employer: who to call, whether an ambulance is needed, and whether you need to rest afterwards.

Lifestyle tips

• Think about whether to tell your employer. You do not always have to, but you should if your seizures could put you or others at risk, or if you need adjustments. Many people find telling a manager and a couple of trusted colleagues makes work feel safer.
• Ask about reasonable adjustments. Depending on your job, this could include regular hours instead of night shifts, extra breaks, a quieter desk, time off for appointments, safe equipment, or having someone else do tasks that carry risk.
• Ask about a referral to occupational health. They can give independent advice on whether adjustments are needed and how to make them.
• Check your rights. In the UK, the Equality Act 2010 protects people with epilepsy from unfair treatment and requires employers to make reasonable adjustments. Similar laws exist in many countries.
• Think about safety-critical jobs. Some jobs — such as commercial driving, flying, certain work at heights, or jobs where you are responsible for others' safety — have specific rules. Ask your doctor, and check with the employer or the relevant regulator rather than guessing.
• Keep a seizure action plan at work and, if you are comfortable, tell one or two colleagues what to do.
• Know your country's driving rules, since these can affect how you get to work.

Diet and exercise

Regular meals, plenty of water and steady sleep all help. Exercise is good for epilepsy and for your mood — walking, swimming with a buddy, cycling on quiet routes and team sports are all fine for most people. Ask your doctor about any activity that carries a risk if you have a seizure, such as swimming alone, climbing, diving or cycling on busy roads. In the UK, you must not swim alone if your seizures are not controlled. Alcohol and recreational drugs can trigger seizures and interact with medicine, so it is worth discussing them openly with your doctor.

Mental health and emotional wellbeing

Living with epilepsy can be stressful, and worrying about seizures at work is very common. Some people feel anxious about telling an employer, fear losing a job, or feel embarrassed after a seizure. Anxiety and low mood are more common in people with epilepsy, and they are treatable — talking therapies and support from your doctor or an epilepsy nurse can help a lot. If you ever have thoughts of harming yourself, please reach out for help right away: contact your local emergency number or a crisis helpline in your country, or tell someone you trust and ask them to stay with you.

Prevention

Most epilepsy cannot be prevented. You can lower some risks by protecting your head (for example, wearing a helmet when cycling or doing contact sports), managing blood pressure and heart health to reduce stroke risk, limiting alcohol, and getting prompt treatment for brain infections. If you already have epilepsy, good sleep, regular medicine and avoiding known triggers reduce the chance of seizures.

Vaccines

There is no vaccine for epilepsy itself. Some vaccines protect against infections that can affect the brain, such as meningitis and some causes of encephalitis. Ask your doctor or pharmacist which routine vaccinations are recommended for you.

Screening programmes

There is no screening test for epilepsy. If you have a job that requires a medical check — for example driving, flying or safety-critical work — the assessment is about your individual risk, not about screening for epilepsy in general.

Complications

If left untreated

• Injuries from falls or accidents, especially in jobs with machinery, heights or driving.
• Long or repeated seizures, which are a medical emergency.
• Problems with memory and concentration.
• Anxiety, low mood and social isolation.
• Rarely, sudden unexpected death in epilepsy (SUDEP) — this is uncommon, and the risk is lower when seizures are well controlled, so good treatment and regular reviews really matter.
• For some people, seizures during pregnancy carry extra risk, so planning ahead with your doctor is important.

Long-term outlook

The outlook is good for most people. About 7 in 10 people with epilepsy become seizure-free with the right treatment, and some are eventually able to stop medicines after several seizure-free years. Many people with epilepsy build full, successful careers — sometimes with small adjustments, sometimes with none at all. If seizures are hard to control, specialist centres and newer treatments offer real hope, and support is available at every stage.

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