Transgender and Epilepsy Health

The medical and social considerations facing transgender people with epilepsy

As a young person with epilepsy, there’s no doubt things that you’ve had to think about and deal with that many other young people haven’t. Taking anti-seizure medications, or ASMs, having regular appointments with your epilepsy doctors and the worry of having seizures may all be part of your everyday life.

If you are also transgender or you’re seeking a diagnosis for your gender dysphoria, then you’ll have other medical and social considerations as well as those concerning your epilepsy.

You may be aware too, that some ASMs can interact with some of the medications used to help you with your transition.

In this article, we’re going to talk about what these interactions might be, and what support is available to you to ensure that all of your medications are providing you with the best support and care.

The possible risks of taking ASMs and hormone medications at the same time

According to the Office for National Statistics, there are between 200,000 and 500,000 transgender people currently living in the UK. This is enough to fill Wembley Stadium 5 times over! Although you might at times feel alone, you’re not on your own in going through the physical, emotional and social struggles you might have had or be currently experiencing.

Being medically diagnosed with gender dysphoria or at any stage of your gender reassignment, you will be receiving medical care. You may be being prescribed medications, in particular, hormonal medications, that will help you through your transition.

A recent study has shown that there are “multiple bidirectional interactions between ASMs and the commonly used treatments for aligning external sex characteristics with identified gender”.

This means that there can be harmful side effects from taking certain medications at the same time, which may cause one or multiple medications to not have the desired effect. For example, taking some hormonal medications alongside ASMs could interfere with the hormone levels in your body, affecting the progress of your transition and can depend on whether you are transitioning from male to female or female to male. Some hormonal replacement therapy might also cause your ASMs to be less effective or impact seizure frequency.

Ensuring that your medications are providing the best support

It can feel overwhelming, knowing that having epilepsy whilst being transgender can mean that your medications can interact with one another. But with honesty and transparency with your medical and support teams allowing them to prescribe the right combination of medications, this can be one less thing to be concerned about.

It’s important that all of your medical teams have all of your medical notes, and that you feel comfortable talking to each of your teams about your whole wellbeing, not just the aspect of your health that they’re an expert in.

You are so much more than your seizures, and with a holistic approach, your appointments with your epilepsy medical teams can be about you as a whole and not just your epilepsy.

Having a chronic medical condition as well as making your way through transition and having the confidence to be yourself can be difficult and challenging. However, with the right support from both your epilepsy doctors and your gender affirmation teams, there’s no need for there to be any danger to you, leaving you to get on with being you.

And don’t forget, here at Young Epilepsy, we’re here for you and nothing is off limits. We already think you deserve congratulating for taking the steps to being the true you. But if you’re having difficulty expressing who you are to your epilepsy team, we can help you with opening up the conversations that will help you lead the life you so thoroughly deserve.