The daily grind can tax anyone, but when you have epilepsy, you face challenges that most don’t. From the fear of seizures and nasty falls to recurring anxiety and stress, living with epilepsy can be downright overwhelming at times. However, there are ways to manage, diminish and even prevent some of the effects epilepsy has on your day-to-day activities – without feeling as though you’re missing out.
“For many people with epilepsy, living a full, active life is a very realistic goal,” explains Ellen Air, M.D., a neurosurgeon at Henry Ford Health who specializes in epilepsy treatment.
1. Be your own epilepsy expert.
Epilepsy impacts daily life differently for everyone, so the first step to managing your condition is to have a thorough understanding of your individual epilepsy. Ask your physician and pharmacist these types of questions:
- What type of seizures do I have?
- What are the side effects of my medication?
- Who needs to know about my epilepsy?
- How often should I see my doctor?
Then, create an epilepsy plan with your loved ones, including making sure everybody knows how to provide seizure first aid.
2. Monitor your epilepsy.
Keep track of the patterns in your seizures, the side effects of your medication, any shifts in mood and other symptoms. This data can help you and your doctor identify seizure triggers to assess and refine your treatment. Use a standard diary or journal to record this information, or download a smartphone app. With these types of apps, you can manage your epilepsy in several ways. This includes:
- Recording the details of your seizures
- Monitoring your medication intake
- Setting medication reminders
- Configuring alert sounds
If your seizures are frequent or interfere with daily activities – despite taking your medications as prescribed – it may be time to see a seizure specialist. An epileptologist is a neurologist with specific training in the diagnosis and treatment of seizures. They can ensure the type of seizures are correctly diagnosed and match the best treatment.
3. Invest in some tech.
From sleep activity monitors to the latest smart watch technology, there are a number of alarm-sounding and help-summoning devices to assist you in the event you have a seizure.
4. Connect with others.
According to the World Health Organization, an estimated 50 million people worldwide live with epilepsy. Tap into this large community through one of the many support groups in your area. Discuss your story, share coping methods and make new friends – all of which can help improve your mood and dispel feelings of isolation.
5. Be active.
Daily aerobic exercise can improve your mood, health and overall self-esteem, and may reduce the number of seizures you experience. “Exercise can be as simple as taking a walk with a friend or working in the garden,” Dr. Air says. “The key is to find the exercise that’s best for you." Depending on your type of seizures, certain activities such as swimming, rock climbing and contact sports should be avoided as they could place you in a dangerous situation should you have a seizure. Be sure to keep track of your exercises in your journal and share your results with your doctor.
6. Stick to a sleep schedule.
Fatigue is a known seizure trigger in some people, so regular sleep is important. Create a regimented sleep routine and stick with it. If this doesn’t fit with your work schedule, meet with your supervisor to discuss changing your hours.
7. Watch what you drink.
Cut down on highly caffeinated beverages such as coffee and soda, which can also contribute to sleep deprivation. In addition, avoid alcohol as it may interfere with your medications and impair your judgment, leading to potentially unsafe activities.
8. De-stress with aromatherapy.
Stress is another known trigger of seizures. While there are many ways to relax, from exercise to meditation, aromatherapy massage is an effective means of relaxation. While many calming oils, such as jasmine and chamomile, are safe for people with epilepsy, you should avoid certain oils, including:
- Spike lavender
9. Epilepsy-proof your home.
There are many ways to make your home safer in the event you have a seizure. These include:
- Cover or replace tile and hardwood floors with carpeting.
- Use electric appliance and devices with automatic shut-off switches.
- Invest in kitchen and living room chairs that have high arms to keep you from falling off.
- Install a safety strap in the tub or shower.
- Whenever possible, cook meals in the microwave rather than on the stove.
- Use plastic dishes and utensils.
- Purchase cups with lids to avoid spills.
10. Always carry identification.
When you go out, carry a medical ID card or wear a medical bracelet or other piece of jewelry that clearly states that you have epilepsy and lists your medications and emergency contact information. This is particularly important when traveling with epilepsy.
Ellen Air, M.D., is a neurosurgeon who sees patients at Henry Ford Hospital in Detroit and Henry Ford West Bloomfield Hospital.