Did you know that there are 3.4 million people living with epilepsy in the United States? Everyone's experience of living with epilepsy is unique to them. But whatever way epilepsy affects you, the following ten considerations may be helpful for thinking about how you’ll manage the condition at different stages of life.
10 things to think about when living with epilepsy
The following ten considerations may be useful for thinking about living with epilepsy. These are of course general ideas - you should always follow your doctor's advice first. Speak with your treatment team if you have any questions or uncertainties related to your personal situation.
1. Learn as much as you can about your own epilepsy
It is ultimately your doctor’s responsibility to help you manage your epilepsy. However, you can really benefit a lot by learning as much as you can about your own syndrome, the kinds of seizures you have, and what that means for you.
Begin by speaking with your doctor to get as much information as possible. But to learn more, there are several trusted online resources where you can find out more about the condition:
- The CDC’s epilepsy resources
- The Epilepsy Foundation
- The Epsy blog
- American Academy of Neurology
- The NAEC
2. Have a plan to manage your seizures
Whether your seizures are controlled or not, whether they happen frequently or rarely, in the day or at night, it is very helpful to have a plan for when they do happen.
Work with your doctor and your loved ones, so you and they know what to do when seizures happen. That might include getting your family and friends to learn seizure first aid, knowing when to call 911, or spotting your auras.
3. Stick to your medication
Doctors usually prescribe anti epilepsy drugs (AED’s) to help control seizures. Remember to take your medication just as your doctor prescribes - forgetting to take your AED’s is one of the leading causes of breakthrough seizures.
If you find that anti epilepsy drugs aren’t stopping your seizures - or the side effects are affecting you negatively - speak to your doctor about alternative forms of treatment.
Learn more: Why might a medication not work for you?
4. Keep in touch with your treatment team
Staying in contact with your epilepsy treatment team can really help with managing your condition. Make sure you attend scheduled appointments and provide your epilepsy specialist with as much information as you can about your seizures and medication. You can use Epsy to record every time you take AED’s or have seizures and send this information automatically to your doctor.
Find out how to connect with your doctor on Epsy here.I
5. Identify your seizure triggers
If you are living with epilepsy, it is really helpful to identify your seizure triggers. Triggers are things which make it more likely you'll have a seizure. They commonly include things like stress, tiredness, forgetting to take medicine, alcohol and, for some people, things like flashing lights. By identifying your triggers, you can find ways to avoid them.
6. Adjust your home environment
Thinking about the way your home is laid out can be very helpful if you are living with epilepsy. Some simple precautions, such as putting covers on hard edges, avoiding cooking on the front of the stove top (place pots at the back), or taking showers instead of baths can be really helpful.
7. Think about comorbidities
A comorbidity is any condition that arises alongside another illness. A particularly common comorbidity for people with epilepsy is depression – having epilepsy can cause anxiety, stress and low mood (which may also be a side effect of AED’s). Noticing comorbidity symptoms and finding ways to tackle them can really improve your quality of life.
8. Know your rights
While attitudes towards epilepsy are generally improving, it is sadly still true that some employers and other organizations still discriminate against people with epilepsy. It's therefore helpful to familiarize yourself with your rights as a person living with a disability.
9. Prepare for lifestyle changes
Living with epilepsy can mean you will have to make certain lifestyle changes. Having the condition could limit your ability to drive, travel or participate in activities such as drinking alcohol or playing certain sports. In most cases there are alternatives available.
10. Major life events
Epilepsy can interact with some of the big events in life, such as starting relationships, leaving your childhood home, getting a job, starting a family and getting older. It's important to take the time to learn about how the condition could affect these experiences so you know what to expect and how to prepare.
Living with epilepsy
Your experiences of living with epilepsy are just as unique as you are. By learning more about your seizures, preparing for how epilepsy might affect your lifestyle and managing the condition, you can learn to live with epilepsy in the most appropriate way for you.
