Know to Prevail

Screenings by age and gender

Screenings if you have epilepsy

The NHS says people with epilepsy are supported by their GP and a team of specialists and have check-ups at least once a year. (NHS) NICE says people with epilepsy are at higher risk of depression, that anxiety is also associated with epilepsy, and that some long-term epilepsy medicines are linked with lower bone density. (NICE NG217, section 9) (NICE NG217) This page covers the checks tied to epilepsy, not seizure medicines, doses or treatment.

The regular review

For children and young people, NICE says to agree a frequency for regular reviews that is tailored to the child and at least every 12 months. (NICE NG217) For adults, NICE says to arrange regular (at least annual) monitoring reviews for people with epilepsy and any of the following: (NICE NG217)

  • a learning disability
  • drug-resistant epilepsy
  • a high risk of sudden unexpected death in epilepsy (SUDEP)
  • a serious comorbidity, such as complex psychosocial, cognitive or mental health problems
  • antiseizure medications associated with long-term side effects or drug interactions, including sodium valproate
  • being able to get pregnant while taking sodium valproate, topiramate or another high-risk antiseizure medication for pregnancy

NICE also says that people who continue to have seizures should be offered epilepsy specialist nurse sessions at least twice a year and after emergency department visits, and that these sessions cover topics such as low mood, memory, sleep, safety and reproductive health. (NICE NG217, section 11) Anyone with epilepsy can ask for a review if they have concerns or their care needs change, for example when planning a pregnancy. (NICE NG217)

Depression, anxiety and memory

NICE says to review neurodevelopment, cognitive function, mental health, social and emotional wellbeing and learning disabilities as part of routine care for people with epilepsy, to offer assessment for people with epilepsy and depression, and to be alert to anxiety, other mental health difficulties and the risk of suicide. (NICE NG217, section 9) For children and adolescents with epilepsy, the International League Against Epilepsy (ILAE) task force recommends: (ILAE, 2024)

  • universal screening for anxiety and depression
  • closer surveillance for children after 12 years, those at higher risk, those with subthreshold symptoms and those whose seizures are getting worse or whose treatment is changing
  • formal screening with more than one source of information, and a clinical interview whenever possible

See depression screening: what to expect, anxiety screening (GAD-7), mental health screenings by age and memory screening (Mini-Cog and MoCA).

Bone health

NICE says to be aware that long-term treatment with some antiseizure medications (such as carbamazepine, phenytoin, primidone and sodium valproate) is associated with decreased bone mineral density and an increased risk of osteomalacia. (NICE NG217) The MHRA says this can lead to osteopenia, osteoporosis and fractures in people at risk, including people who are immobilised for long periods, have little sun exposure or get too little calcium in their diet. (MHRA) Neither NICE NG217 nor the MHRA advice sets a bone density scan schedule for people with epilepsy, so the usual rules apply. See bone density test: how often and DEXA scan: what to expect.

Planning a pregnancy

NICE says to regularly review the information given to women and girls with epilepsy about contraception, conception and pregnancy, tailored to their age. It says to refer women and girls with epilepsy who are planning pregnancy or are pregnant to an epilepsy specialist team for a review, and to refer men taking sodium valproate who are planning a family within the next year. (NICE NG217) NICE also says to consider more frequent reviews in pregnancy for women and girls who are taking antiseizure medication and: (NICE NG217)

  • have a learning disability
  • are aged under 16
  • have active epilepsy (a seizure within the past 12 months)
  • have bilateral tonic-clonic seizures
  • have risk factors for SUDEP that can be changed

The NHS says there is a chance of more seizures in pregnancy, that extra appointments and tests may be needed, and that anyone planning a pregnancy or who finds out they are pregnant should keep taking their medicine and speak to their specialist team straight away. (NHS) See preconception checkup screenings and pregnancy screenings by week.

Usual screening on schedule

Epilepsy does not change the general schedules for cancer, heart and other screening in the sources on this page. See cancer screenings by age and screenings by age and gender.

When to contact a provider

MedlinePlus, epilepsy, when to contact a medical professional: (MedlinePlus)

  • Call 911 or the local emergency number if: This is the first time a person has a seizure; A seizure occurs in someone who is not wearing a medical ID bracelet (which has instructions explaining what to do).
  • In the case of someone who has had seizures before, call 911 or the local emergency number for any of these emergency situations: This is a longer seizure than the person normally has, or an unusual number of seizures for the person; Repeated seizures over a few minutes; Repeated seizures in which consciousness or normal behavior is not regained between them (status epilepticus).
  • Contact your provider if any new symptoms occur: Loss of hair; Nausea or vomiting; Rash; Side effects of medicines, such as drowsiness, restlessness, confusion, sedation; Tremors or abnormal movements, or problems with coordination.

Where they differ:

  • Who gets a yearly review. The NHS says people with epilepsy have check-ups at least once a year; (NHS) NICE sets at least every 12 months for all children and young people, but names at least annual reviews only for adults in certain groups, with reviews on request for others. (NICE NG217)
  • Depression and anxiety screening. The ILAE task force recommends universal formal screening for anxiety and depression in children and adolescents with epilepsy; (ILAE, 2024) NICE asks for mental health to be reviewed as part of routine care and for professionals to be alert to anxiety and suicide risk, without naming a screening tool or interval. (NICE NG217, section 9)

Your doctor decides what your result means for you.

Questions people ask

How often should someone with epilepsy have a review?

The NHS says people with epilepsy have check-ups at least once a year. NICE says to agree a review frequency of at least every 12 months for children and young people, and to arrange at least annual reviews for adults in certain groups, such as those with a learning disability, drug-resistant epilepsy or a serious comorbidity. (NHS) (NICE NG217)

Should people with epilepsy be screened for depression and anxiety?

NICE says to review mental health as part of routine epilepsy care and to be alert to anxiety, other mental health difficulties and the risk of suicide. For children and adolescents, the International League Against Epilepsy recommends universal screening for anxiety and depression, with closer surveillance after age 12. (NICE NG217, section 9) (ILAE, 2024)

Does epilepsy affect bone health?

NICE and the MHRA say long-term treatment with some antiseizure medications, which they name as carbamazepine, phenytoin, primidone and sodium valproate, is associated with decreased bone mineral density. MedlinePlus says many epilepsy medicines may affect bone health. (NICE NG217) (MHRA) (MedlinePlus)

What checks come before a pregnancy with epilepsy?

NICE says women and girls with epilepsy who are planning pregnancy or are pregnant should be referred to an epilepsy specialist team for a review, and men taking sodium valproate who plan a family within the next year should be referred too. The NHS says to speak to the specialist team straight away when planning a pregnancy. (NICE NG217) (NHS)

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