Transgender people and epilepsy
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How might epilepsy affect transgender people?
On this page, we will use the term ‘transgender’ (or ‘trans’) to include everyone whose gender identity doesn’t match the sex they were assigned at birth. This includes non-binary people.
Epilepsy affects around 1 in 100 people. This means lots of people in the UK will be transgender and also have epilepsy.
Hormones and Epilepsy
Transgender people may take hormones (gender affirming hormonal treatment) to help them feel more comfortable in their bodies. Taking hormones may impact your epilepsy treatment and seizures. Hormone levels may also vary over time.
Epilepsy itself may cause changes to sex hormone levels in people of any gender. Different types of epilepsy, different hormones and the variety of epilepsy medicines can make things complicated. It’s often difficult to know how a change in your medicines might affect you, and it can be difficult to predict change in your epilepsy over time.
For some people, hormone levels can have an impact on their seizure pattern. As well as this, hormones can change the amount of epilepsy medicines in your blood. So if you take hormones or a hormone blocker, this could cause a change in your seizures. Your specialist might need to change the dosage of your epilepsy medicines to account for this.
Here is some information about epilepsy and hormone therapy.
If you take masculising hormone therapy:
If you have a testosterone injection every few weeks or months, your testosterone levels will be slightly higher in the days just after the injection and lower in the days just before the next injection. This variation in hormone levels may have an impact on your seizures.
If you take feminising hormone therapy:
We don’t know whether oestrogen can impact seizures in people assigned male at birth. It is a good idea to keep a seizure diary and note down any other medications you’re taking each day, and discuss this with your doctor.
If you were assigned female at birth:
If you have periods, you may notice a difference in your seizures at certain points in your cycle (catamenial epilepsy). Taking hormones or hormone blockers that stop the periods may affect your seizures. Epilepsy Action has more information on periods and menstruation.
It’s really important that you talk to your healthcare professional about all the treatments you are having. This includes epilepsy medicines, hormone treatment, herbal medicines, or unregulated medicines. If you don’t take your medicines as prescribed, it may affect your seizure control and cause breakthrough seizures. This can put you at higher risk of status epilepticus, which is a medical emergency.
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Will my hormone therapy affect my epilepsy medicines?
Many people with epilepsy take epilepsy medicines to control their seizures. All epilepsy medicines can have side effects and may interact with your hormone treatment. For example, oestrogen may make some medicines less effective. However, your doctor will tell you if this applies to you. If they haven’t, you should ask them. The National Institute for Health and Care Excellence (NICE) have advised that if you are taking lamotrigine, your specialist may need to adjust the dosage. You will be able to get advice from your healthcare team on this.
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Will my epilepsy medicines affect my hormone therapy?
Some epilepsy medicines are known as ‘enzyme inducers’. This means that they can speed up the way hormones are broken down in your body. Taking these may mean you need a different dosage of your hormone treatment to get the effect you want. More research is needed into newer types of epilepsy medicines and how they interact with hormone therapies.
Some epilepsy medicines may be more likely to have unwanted side effects. These could include weight gain, hair loss or body hair growth. You can talk to your specialist about trying a different medicine if you have concerns about these.
Seizure triggers
Some people with epilepsy find that certain things can trigger a seizure. These can include stress and lack of sleep. So, it’s a good idea to think about how you could try to manage these if they are a problem for you.
There is no evidence that wearing items like binders would impact your epilepsy. But some people find that wearing uncomfortable clothes or becoming too warm is stressful.
Seizure triggers can be different for everyone so it’s worth keeping a diary to track changes. This may help you to spot any patterns around hormone treatments or lifestyle factors that could be seizure triggers for you.
If you have photosensitive epilepsy and are having hair removal treatments, check with the salon if there will be flashing or flickering lights. If it does have these lights, you could find out if it would be visible to you during the treatment. We have more information about beauty treatments.
Managing different health needs
Having more than one health need can be difficult to manage. It is often hard to know which professional to talk to. You might be worried about how a decision about one part of your health could affect the other.
Transgender people can face social stigma and challenges when accessing health care. It is important that the specialists for both your transgender care and epilepsy understand the links.
If you have the support of a gender identity clinic or private trans healthcare provider, make sure they know you have epilepsy.
You should also tell your epilepsy healthcare team the sex you were assigned at birth. This is because your sex can have an impact on your epilepsy or your epilepsy treatment.
They will also need to know about any other medicines you are taking. This is because medicines can interact with each other and have unwanted side effects. Examples of these could be anti-depressants or anti-anxiety medicine.
People with epilepsy are more at risk of having mental health problems. This includes stress, depression and anxiety. These are things that can also be more common in transgender people. Your specialist may try medicines that have a lower risk of mood related side effects.
Getting support
Look for NHS Rainbow badges: these are worn by staff who have pledged to reduce inequalities and provide support to LGBTQ+ people.
Take someone you trust with you to appointments. It can be helpful to have another person listening and supporting you during health treatments or tests.
Epilepsy Action has lots of options to get in touch for support and advice.
Altogether, being transgender and having epilepsy might be a challenge. But there are people you can talk to if you have questions or need support. Some of these are listed below. You can also speak to your healthcare team.
Other sources of support
Gendered Intelligence
Increasing understanding of gender diversity and improving trans people’s quality of life
Tel: 0800 640 8046
Email: supportline@genderedintelligence.co.uk
Mermaids UK
Supporting trans, non-binary and gender-diverse children, young people and their families
Tel: 0808 8010 400
LGBT+ Switchboard
A safe space for anyone to discuss anything, including sexuality, gender identity, sexual health and emotional well-being
Tel: 0800 0119 100
Email: hello@switchboard.lgbt
TransActual
Sharing facts about trans rights, UK law, NHS healthcare and transphobia
Mindline Trans+
A confidential support helpline and signposting service for people who identify as trans, agender, gender fluid, and non-binary. Support for everyone dealing with any transgender issues, be it for themselves, their parents, siblings, colleagues, friends, or professionals.
Tel: 0300 330 5468 (Currently Friday evenings)
Got any questions?
Our expert advisors can help you with any questions you might have about living with epilepsy.
