Women with Epilepsy: Life Beyond the Childbearing Years

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Women with epilepsy present with unique challenges due to cyclical fluctuation of hormone levels from the onset of menstruation to menopause. The menopausal period is particularly challenging for women with epilepsy with a complex relationship between hormones, anti-seizure medications (ASMs), decreased bone strength and an increased fracture risk.

What is menopause?

Menopause is a natural biological aging process that marks the end of a woman’s reproductive years. There are three phases: perimenopause, menopause, and post-menopause.

Perimenopause: is when you experience menopausal symptoms due to hormone changes, but still have your menstrual period.

This usually starts in the 40s and can last several years. Hormonal changes generally begin with a drop in estrogen production and a change to the estrogen: progesterone balance. This leads to changes in menstruation and a range of other symptoms including hot flushes, night sweats, mood changes, joint pains, hair and skin changes, weight gain, loss of sexual desire, brain fog, fatigue and poor sleep.

Menopause: is when you have not had a period for 12 consecutive months.

Menopause usually starts around the age of fifty and is associated with a significant reduction in both estrogen and progesterone production. Symptoms vary widely, and in severity and duration and can fluctuate during the transition phases. It is considered early if it starts before age 45.

During perimenopause and menopause, hormone levels fluctuate greatly,
and this imbalance can result in a range of symptoms, from hot flushes to
aches, pains, and mood changes.

Postmenopause: the time in your life after you have not had a period for 12 consecutive months. In this phase, hormone levels stabilise, and the perimenopause and menopausal symptoms should slowly lessen.

There is no way to predict the age at which a woman’s menopausal symptoms
will start or how long they will last.

Menopause symptoms

Ask any woman who is going through or has been through menopause about their symptoms and they will differ for each. Every woman is affected by menopause in some way – either they experience symptoms or other physical changes (1).

  • Hormonal changes cause the menopausal symptoms.
  • Most women have symptoms for 5 to 10 years

Common symptoms include:

  • Changes in periods
  • Difficulties sleeping
  • Hot flushes and night sweats
  • Joint pains
  • Tiredness and fatigue
  • Mood changes and depression/anxiety
  • Overactive bladder
  • Dry vagina
  • Weight gain

This list is not exhaustive (2).

Symptom management

There are many myths and misunderstandings about menopause. Managing symptoms requires a holistic approach so try to get an appointment with a doctor who is well-versed in women’s health so you can sit down and work out a personalised treatment plan, plus discuss the benefits and risks of different approaches.

Considering women live around one third of their lives after menopause,
optimising physical and mental health during this period is important.

Menopausal hormone therapy (MHT), (previously called hormone replacement therapy, HRT) is a common way to manage menopause symptoms.

Women sometimes seek alternative treatments for the symptoms of menopause if they have not found relief with lifestyle changes or their hormone replacement therapy does not work. Some may be advised against hormones because of a medical condition and others want to avoid them after hearing about health risks (3). Other options people use to manage menopausal symptoms include non-hormonal medications to help with hot flushes,  lifestyle modifications, herbal supplements, and talking therapies to help cope with mood swings, anxiety, and responses to stress during transition periods.

It is important to consult with your epilepsy specialist before commencing
any treatment for menopause.

Menopause related issues in women with epilepsy

Research in this area is limited and the effects of epilepsy on menopause, and the effects of the hormonal changes of menopause and HRT on epilepsy, cannot be reliably predicted (4).

Catamenial epilepsy is when seizures occur at certain times within the menstrual cycle. Having this type of epilepsy may predispose someone to an increase in seizure frequency during perimenopause because of the hormonal fluctuations (5). The ratio of estrogen and progesterone is important as changes in this ratio play a role through the life course of women with epilepsy. For example, for some women, seizures can get worse at certain times during their menstrual cycle (catamenial epilepsy)(6).

Effects of epilepsy on menopause

It is reported that menopause occurs earlier in women with a high seizure frequency (7). There is a higher frequency of premature ovarian failure in women with epilepsy, occurring more commonly in women with catamenial epilepsy (8).

Effects of menopause on epilepsy

There are very limited studies but it has been reported that those with a history of a catamenial seizure pattern had increased seizures during perimenopause and decreased seizures at menopause (9).

Effects of MRT on epilepsy

There is only one very small study of synthetic MRT in epilepsy and it was noted that MRT may be associated with an increase in seizure frequency (10). This study does not necessary imply MRT should not be used, but rather perhaps the older synthetic MRT are not the optimal choice.

Seizure triggers

Common reported seizure triggers include tiredness, lack of sleep, stress, missing medication, and female hormones to name a few. Common menopausal symptoms such as night sweats, disturbed sleep, anxiety, low mood, could also affect seizure control as these are common trigger factors for seizures.

Bone Health

Menopausal women with epilepsy may also face challenges related to bone health. Some medications for epilepsy can increase the risk of osteoporosis and bone fractures.

The exact reason for this is not entirely understood. But it’s thought that some ASMs change the way vitamin D is broken down and used by the body. Vitamin D helps the body absorb calcium, which is essential for bones.

ASMs are more likely to affect the strength of your bones if:

  • you are taking the medication in high doses
  • you have taken a lot of different types of ASMs
  • you have been taking them for many years (11)

Also, the direct effects of ASMs may also increase the risk of falls, by causing drowsiness and unsteadiness.

This is an important concern for women with epilepsy going through menopause, as bone density tends to decrease with age. Women with epilepsy taking long term ASM’s are at risk of low bone density and associated with bone disorders such as osteoporosis and fractures during and after menopause (12).

Talk to your doctor about having your vitamin D levels checked, and a bone
density scan to check your bone health.

To help to maintain healthy bones:

  • have a well-balanced diet with adequate calcium rich foods
  • do regular weight-bearing exercise but taking care to exercise within your capabilities particularly if you have any balance problems or physical disability
  • avoid smoking and keep alcohol consumption within the recommended limits.(13)

Summary

Menopause is associated with significant hormonal changes, with decreases in oestrogen and progesterone levels.

  1. Some studies have reported a change in seizure frequency in women during perimenopause and menopause and hormonal fluctuations are likely to play a role.
  2. The use of Menopause Hormone Therapy (MHT, previously known as HRT) is complex and involves weighing potential benefits against risks, including the potential risk of increased seizures. Much needs to be learnt about the which MHT could be the safer option for women with epilepsy.

Future directions

In recent discussions with Associate Professor Lata Vadlamudi, Neurologist and Epileptologist, Queensland University stated “We have very little information on the management of women with epilepsy in peri-menopause and beyond.” A/Professor Vadlamudi went on to emphasis that management needs to include:

  1. How to anticipate potential changes to seizures,
  2. Managing menopausal symptoms, and
  3. Bone health to reduce the facture risk

Women with epilepsy need more support, resources, awareness, and education. Start the conversation early with your neurologist.

There is a great need for more research in this area. Current gaps in knowledge:

  • What is the role of menopause hormone therapy in women with epilepsy?
  • There is a need for practice guidelines to be developed such as:
    • Management of menopausal women with epilepsy
    • How to reduce fracture risk in people with epilepsy.

Women with Epilepsy Beyond the Childbearing Years – Survey

We are seeking the thoughts of women with epilepsy who are approaching the menopausal years, or currently in perimenopause, menopause, or post-menopausal phases of life. By completing this anonymous, 2-minute survey you will be contributing to the scarce knowledge base about the lived experience of women living with epilepsy and how you can be better supported through this period. Epilepsy Action Australia is assisting A/Professor Lata Vadlamudi from Queensland University with this survey. The insights from this survey will form the basis of a collaborative research funding application with the University of Queensland and Monash University.

Please scan the QR code or go to https://survey.app.uq.edu.au/women-with-epilepsy-after-childbearing—consumer-survey

Further information:

Ask an Expert: Women with Epilepsy – Dr Michelle Kiley

https://wellfemme.com.au/

https://www.menopause.org.au/

https://www.menopause.org.au/health-info/infographics/what-is-menopausal-hormone-therapy-and-is-it-safe

 

References:
  • Australasian Menopause Society. Treatment Options. Accessed 16 Nov 2023 https://www.menopause.org.au/hp/management/treatment-options
  • Australasian Menopause Society. Treatment Options. Accessed 16 Nov 2023 https://www.menopause.org.au/hp/management/treatment-options
  • Australasian Menopause Society. What are the Symptoms. Accessed 19 Nov 2023 https://www.menopause.org.au/health-info/fact-sheets/menopause-what-are-the-symptoms
  • Crawford, P. (2005). Best practice guidelines for the management of women with epilepsy. Epilepsia, 46, 117-124
  • Cleveland Clinic. Online Heath Chat with Dr Adele C. Viguera, MD, MPH. Menopause and epilepsy. September 17, 2009 | Reviewed on February 11, 2014 by Dr. Adele C. Viguera, MD, MPH
  • E. Voinescu, M. Kelly, J. A. French, C. Harden, A. Davis, C. Lau, et al.(2023). Catamenial epilepsy occurrence and patterns in a mixed population of women with epilepsy. Epilepsia, Accession Number: 37452790 DOI: 10.1111/epi.17718, https://www.ncbi.nlm.nih.gov/pubmed/37452790
  • Harden, C.L., Koppel, B.S., Herzog, A.G., Nikolov, B.G., Hauser, W.A. (2003), ‘Seizure frequency is associated with age at menopause in women with epilepsy’, Neurology, 61(4), pp.451–55
  • Klein P, Serje A, Pezzullo JC. Premature ovarian failure in women with epilepsy. Epilepsia. 2001 Dec;42(12):1584-9. doi: 10.1046/j.1528-1157.2001.13701r.x. PMID: 11879371.
  • Harden CL, Pulver MC, Ravdin L, Jacobs AR. The effect of menopause and perimenopause on the course of epilepsy. Epilepsia. 1999 Oct;40(10):1402-7. doi: 10.1111/j.1528-1157.1999.tb02012.x. PMID: 10528936.
  • Harden, C. L., Herzog, A. G., Nikolov, B. G., Koppel, B. S., Christos, P. J., Fowler, K., Labar, D. R., & Hauser, W. A. (2006). Hormone Replacement Therapy in Women with Epilepsy: A Randomized, Double-Blind, Placebo-Controlled Study. Epilepsia, 47(9), 1447-1451. https://doi.org/10.1111/j.1528-1167.2006.00507.x
  • Royal Osteoporosis Society. Antiepileptic drugs and bone health. Accessed 14 Nov 2023. https://theros.org.uk/information-and-support/osteoporosis/causes/anti-epileptic-drugs/
  • Bangar, S., Shastri, A., El-Sayeh, H., & Cavanna, A. E. (2016). Women with epilepsy: clinically relevant issues. Functional neurology, 31(3), 127–134. https://doi.org/10.11138/fneur/2016.31.3.127
  • Royal Osteoporosis Society. Antiepileptic drugs and bone health. Accessed 14 Nov 2023. https://theros.org.uk/information-and-support/osteoporosis/causes/anti-epileptic-drugs/