How to stay cool in the heat

Climate change means that the UK is experiencing hotter temperatures than ever before and we all need to adjust our behaviour to maintain our wellbeing.  For people with epilepsy this is particularly important, and we have collated some good advice below.  In summary:

- Keep yourself as cool as you can

- Keep your medication cool

- Water for wellbeing

Keep Yourself Cool

For people with neurological conditions, rising temperatures can be a cause for concern. In fact, a survey carried out by the Epilepsy Society showed that the majority of people with epilepsy experience an increase in their seizure activity during unusually hot weather.

If you have epilepsy, particularly if you know your epilepsy is sensitive to heat, you may be feeling worried this summer.  If you are experiencing more seizures during extreme temperatures, speak to your healthcare team. If you are worried and want advice promptly, you may need to call 111 for advice.  In an emergency, always call 999.

There is great Government advice here on their heatwave checklist on how to stay safe during hot weather.

For people with epilepsy there are also some particular concerns.  For example, some anti-seizure medicines, such as topiramate and zonisamide, can affect your ability to regulate your body temperature. If you are taking these and have any issues, it’s important you raise them with your doctor.

It can be tempting to head to a lake or the beach when the temperature rises. But even on warm days, water temperatures can remain dangerously cold. Entering cold water suddenly can trigger cold water shock, causing an involuntary gasp, rapid breathing and loss of control in the water.  And as always, if you have epilepsy, it’s important not to swim alone and always to tell the lifeguard you have epilepsy. For more advice on how to stay safe around water see also this from the  UKHSA's Chief Scientist.

The main message is this: listen to your own body.  You know the warning signs.  Don’t try to ‘push through’.  If you are feeling in any way weak, dizzy, or overheated, take a break.  Tell someone how you are feeling.

Speak to your doctor, ask your employer and family and friends for support, or call our Helpline on 0300 102 0024.

Keep your Medication Cool

Where do you normally store your medicine?  Many of us have a go-to place at home that’s easy for us to remember and access, but that location might not be suitable for summer. 

Find a cool, dark place to store your medicines, where the temperature is always below 25°C. If storage instructions state it needs to be refrigerated, then please follow that guidance.

Think carefully about how best to travel with your medication too in order to keep it below 25°C.  It’s crucial to keep medicines out of hot cars and direct sunlight.  Bags and pockets can also get warm enough to cause problems.  A cool bag will help protect your medication from the effects of overheating. Insulated bags are widely available through many different retailers.  Speak to your pharmacist if you have questions about how best to store your specific medication.

Water for Wellbeing

Keeping hydrated is important when temperatures rise.  Dehydration affects many processes in the body and can make epilepsy worse. Always keep a supply of water with you wherever you go and be aware you will need to drink more than normal.  Alcohol intake should also be limited since it can lead to dehydration.

Some people can develop an electrolyte disorder called hyponatraemia from certain anti-seizure medications and they may have been advised to restrict their fluids, so please discuss this with your doctor if this is the case for you.