Around half the population will experience menopause at some point in their lives. It can often cause symptoms like hot flushes and brain fog, as well as affecting mood and mental health. For women with epilepsy, it can also affect seizures.
While we need more research on menopause, including how it interacts with conditions like epilepsy, menopause specialist Sian Rees says there is a lot that we can do to manage the impact of perimenopause (when you have symptoms of menopause but your periods have not stopped) and menopause.
As well as being a menopause specialist, Sian is a nurse, with previous experience as an epilepsy specialist nurse (ESN). She answers some key questions around menopause and epilepsy.
What questions do people often ask you in your practice?
People have a lot of questions about whether they can take hormone replacement therapy (HRT), and what the risks are of taking it or not taking it.
I also get a lot of questions around seizures – will menopause affect them, why has seizure frequency changed and how can I tell which symptoms are related to epilepsy and which are related to menopause.
Who might have their epilepsy affected by menopause?
Any female assigned at birth with epilepsy going through the menopause could have a change in seizure frequency. Seizure frequency can be affected in women with catamenial epilepsy (where seizures are linked to the menstrual cycle), as it is affected by their hormones. During the perimenopause, hormones fluctuate and this can change the seizure frequency.
Women who don’t have catamenial epilepsy could also be affected, as symptoms such as night sweats, tiredness due to disturbed sleep, anxiety and low mood could affect seizure control, as these are common seizure triggers.
Also, women who have frequent seizures may start the perimenopause earlier than average.
What tips do you have to help people feel empowered to speak to their doctor about epilepsy and menopause?
My best tip would be to do research around perimenopause and menopause beforehand. There is a wealth of information on the Epilepsy Action and Balance websites. Completing and taking a copy of the Menopause Symptom Questionnaire can be very helpful.
Also, it can help to be aware of the National Institute for Health and Care Excellence (NICE) guidelines regarding menopause and shared decision making (when a person and their health professional work together to make decisions about treatment and care). Going armed with resources can make a big difference.
Many women attend multiple healthcare appointments before receiving adequate menopause treatment. But for women with epilepsy, the situation is more complex – the majority of GPs are not menopause specialists, and often refer patients with perimenopause/menopause and epilepsy to neurology, who in turn are also not menopause specialists.
By having robust information/guidelines, people will hopefully feel more confident to have a discussion with their GP.
Success story
One of my patients has given me permission to share her experience, as I thought it was important to see how successful it can be seeing a GP to discuss epilepsy and HRT.
My patient, a 44-year-old woman, came to visit me in clinic. Her seizures started aged 14, and she had both daily focal seizures and tonic-clonic seizures two or three times a year. She has been advised her epilepsy will never be completely controlled, but she manages her seizures and is very aware of her triggers. My patient became perimenopausal aged 40, her periods changed and her seizure frequency increased with the fluctuating hormones. She had hot flushes, night sweats, disturbed sleep and anxiety. Tiredness is one of her seizure triggers, so this also added to her increase in seizure frequency.
She did a lot of reading around menopause and HRT. Her neurologist was happy for her to start HRT. After discussing it with her GP she is now prescribed transdermal oestrogen and micronised progesterone. She is also now on testosterone and has more energy, focus and says she feels more alive. Her seizure frequency is now the same as it was before her perimenopause. She works full time, exercises daily and feels her quality of life is back to where it was before her perimenopause started.
What treatment options are there?
HRT remains the first-line treatment for menopause symptoms. Non-hormonal prescription medication options include antidepressants, gabapentin or pregabalin, clonidine and oxybutynin, which can help to decrease hot flushes and night sweats. However, they do come with their own side effects, which can limit their use. Also, some of these are anti-seizure medications (ASMs), which may not be suitable for some women with epilepsy, as they may interact with other ASMs or affect their seizure control.
Cognitive behavioural therapy (CBT) is recommended in the 2015 NICE menopause guidance for menopause-related low mood. The new updated guidelines have not been published yet.
Some women may opt to try herbal medicines – there is a very small amount of evidence that St John’s Wort or black cohosh may improve hot flushes and night sweats, however quality and potency may vary, and these may interact with medications. It is not recommended for people with epilepsy as it can interact with ASMs and affect seizure control.
There is a lot that women can do to help manage the impact of perimenopause and menopause, including eating healthily, avoiding too much alcohol and caffeine, staying active, managing stress levels, sleeping well and regularly doing enjoyable things. These measures are also very important for people with epilepsy to minimise triggers and their effect on seizure control.
What do you think needs to change in order to improve our understanding about epilepsy and menopause?
We still need to raise more awareness, even though this has improved greatly over the last few years.
More research is definitely needed, as the majority of studies have been done on the older, synthetic HRT, rather than the safer, transdermal/body identical HRT.
We also need compulsory training for GPs on menopause in general. Many GPs are working with outdated knowledge, so training would hopefully give them more confidence prescribing HRT for women with epilepsy.
More publicity is also needed on the Women’s Health Initiative study, which was stopped in 2002 because of claims HRT caused breast cancer, which turned out to be flawed and incorrect. The media coverage around this has had a huge knock-on effect on women’s health and HRT use.
ESNs are also in a difficult position, as many women go to them for advice regarding their epilepsy and menopause. I feel it is crucial for them to have conversations with their patients and to arm them with the resources and knowledge to empower them to discuss their concerns and wishes with their GP.
Can you tell me a bit more about your work in helping to set up the menopause support groups with Epilepsy Action?
Epilepsy Action set up an online Talk and Support menopause group, and invited me to be a part of in June 2023. I was there for advice and to provide patients with information about the perimenopause and menopause, and treatment. It was very informative for me to listen to everyone’s journey, as they varied so much. Some were very positive some not so.
It surprised me how many of the women I spoke to had a change in their seizure frequency during this time. It reinforced how difficult it can be to differentiate between menopause and epilepsy symptoms, as they can be the same.
Tracking symptoms can be helpful at this time to see if there are any changes in frequency of symptoms or if new ones start.
It was also clear from attending this group how important it is to empower women with epilepsy to have the confidence to have a discussion with their GP at what can be a very difficult time.
Support and information
For more information on epilepsy, menopause and HRT, visit our website.
You can also find information on the Epilepsy Action Talk and Support group on menopause online.
There is also more information and resources on the NICE guidelines website, Balance, Women’s Health Concern and Newson Health.
Sian has also been supporting Epilepsy Action in producing a menopause toolkit and self-help materials for people with epilepsy. This will be available soon on the Epilepsy Action website.