Puberty and seizures

Puberty and seizures 
  • The start of puberty is caused by changes in hormones.
  • These hormonal changes may have an impact on some adolescents with epilepsy. This does not always happen, and in some cases seizures lessen.  
  • A small number of females have increased seizures at certain times in their menstrual cycle when their hormones change.1
  • If menstruation is the trigger for changes in seizure frequency, the scientific term used is catamenial epilepsy.2 3 This term refers to the timing of the seizure. It does not change the primary epilepsy diagnosis. 
  • Two main hormones relating to menstruation are progesterone and oestrogen.  
  • The levels of these hormones change during the menstrual cycle. 
Menstrual cycle

Oestrogen lowers the seizure threshold, making it more likely a seizure will occur in some girls. 

Progesterone increases the seizure threshold, making seizures less likely in some girls.

A few treatment approaches may help:
  • Taking progesterone at certain times in the menstrual cycle 
  • Change the anti-seizure medicine(s) 
  • Using a medicine such as clobazam (Frisium) just before the seizures are expected to increase and continuing until the seizure pattern returns to normal 
  • Stopping the menstrual cycle completely using hormones. 
 
Other considerations for girls with epilepsy  

If a child has an intellectual disability, many parents worry about their daughter going through puberty and starting menstruation (or periods). Many parents worry whether their child will understand why they are bleeding and be able to cope with changing pads and tampons.  They may also worry about the risk of an unwanted pregnancy. These concerns should be discussed with your GP and Paediatrician who can counsel you regarding contraception.

There is a helpful Australian website that talks about puberty-related issues in children with a developmental disability. It also covers common worries about periods. For example, the website advises that it is helpful to explain to your daughter that: 

  • The blood is normal 
  • It will happen regularly 
  • It is part of her body changing 
  • She is not hurt.  

The website also explains that periods may not be a big problem. Periods are a normal part of being a girl, and are good for bone and heart health. There are a range of factsheets about periods and puberty available here.  Pictures or storyboards may also help.  

For those girls whose periods are more problematic and who experience issues such as severe pain, irregular periods, or excessive bleeding, you could talk to your neurologist, GP or paediatrician about your concerns.

  • They can explain the different options or suggest that you see an endocrinologist (hormone specialist) or paediatric gynaecologist (women’s health expert).  
  • Various options are available for problematic periods. These include hormone treatments (tablets, devices that can be placed into the body, or injections) or intrauterine devices (IUDs). 
  • These options may help with good menstrual hygiene, decrease the number of periods, and reduce period pain. 
  • As each girl is different, you can discuss your concerns with your neurologist, who knows your daughter and her medical history.
  • Your neurologist may be able to give you more information based on your daughter’s particular type of epilepsy and tailor treatment to her particular situation. They can also check that her seizure plan is up to date.

Some treatments are available for girls with changes in their seizure patterns that are related to the mestrual cycle. 

If your daughters' seizures increase in puberty, your neurologist may change her antiseizures medicines. this may improve seizure control. 

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Content on this page was generated via the GenE Compass project. The following article provides more information about the project: 

  • Robertson EG, Kelada L, Best S, Goranitis, I, Grainger N, Le Marne F, Pierce K, Nevin, SM, Macintosh R, Beavis E, Sachdev R, Bye A, Palmer EE. (2022). Acceptability and feasibility of an online information linker service for caregivers who have a child with genetic epilepsy: a mixed-method pilot study protocol. BMJ Open, 12:e063249. https://doi.org/10.1136/bmjopen-2022-063249 
  • 1Roste (2007). Women and epilepsy: review and practical recommendations. https://www.tandfonline.com/doi/abs/10.1586/14737175.7.3.289?journalCode=iern20
  • 2Epilepsy and Your Changing Hormones. Webmed (June, 2021): https://www.webmd.com/epilepsy/guide/your-changing-hormones
  • 3Catamenial Epilepsy. Cedars Sinai: https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/catamenial-epilepsy.html