Seizures and Period Dates: Preparing a Catamenial Epilepsy Review

If you already have epilepsy and notice seizures clustering around your period, it can be hard to explain the pattern from memory. Bring the seizure dates and bleeding dates together for your epilepsy team. Tell them what you have noticed without changing your prescribed treatment yourself.

What does catamenial epilepsy mean?

Catamenial epilepsy describes seizures worsening at certain times of the menstrual cycle. This may relate to changing estrogen and progesterone levels. The pattern can occur with focal or generalized epilepsy, and increased seizures are not limited to the days of bleeding.¹

Write down the question you want the team to answer: “Could my cycle be affecting when these happen?” You do not need to arrive with a diagnosis or identify a particular hormone as the cause.

Put both records on the same dates

Epilepsy Action¹ recommends recording the menstrual cycle and seizures for three months and discussing patterns with an epilepsy specialist. There is no single test that confirms catamenial epilepsy. Irregular periods can make tracking more difficult, but a diary can still help identify patterns.¹

Ask your team which diary they want you to use. Add the first day of bleeding and any dates when the pattern is unclear to your existing seizure record. If you missed an entry, label it as uncertain. Do not fill in an event just because it seems to fit the pattern you expected.

Bring information from someone who witnessed an event when you have it. NHS² guidance identifies duration, changes in awareness, movements, breathing and recovery as useful observations.²

Keep the witness’s account separate from your own recollection. Tell the clinician how the episodes affect work, plans or the support you need at home. Do not wait until you have three complete months of notes to report increased seizures to your team.

Review treatment with the specialist

A specialist may consider additional medicine or hormonal treatment. Epilepsy Action¹ says evidence for hormonal treatment is not conclusive and interactions with regular epilepsy medicines need checking. Your plan should specify any prescribed changes and their timing.¹

Bring the names of your medicines and any contraception or hormonal products you use. Ask what the proposed change aims to improve, what side effects to report and when you will review the record together. If instructions depend on cycle dates, ask what to do when a period arrives earlier or later than expected.

The emergency plan still applies

Follow an agreed seizure care plan if you know what to do and have been trained. Call your local emergency number for a first seizure, one lasting longer than usual, or one exceeding five minutes when the usual duration is unknown. Also seek emergency help if the person does not regain full consciousness, has repeated seizures without full recovery, sustains a serious injury or has breathing difficulty afterward.²

The diary is for the follow-up conversation. Use the emergency plan when an episode needs immediate help.

Period, Handled includes a Period Scorecard and a Flag It list and visit script. You can use these to organize menstrual dates and appointment questions alongside the seizure diary recommended by your epilepsy team. Have the team interpret the combined record with you.