Living with Epilepsy
Epilepsy is a brain disorder responsible for repeated, unprovoked seizures that can disrupt everyday life and your health. The condition affects people of all ages, races, sexes, and ethnic backgrounds. It occurs when neurons, cells in the brain that control actions, send wrong electrical signals, and trigger seizures.
If you’ve been diagnosed with epilepsy, there are many treatment options and strategies that can help you manage symptoms. While there are many myths about epilepsy, most people can manage the condition well and lead fulfilling lives.
“Because this is a neurological disease without a cure for some, and up to a third of people cannot control their seizures with medication, the information you bring to your health care team is essential for your individual treatment,” says Rani Sarkis, MD, Msc, a neurologist and epilepsy specialist with the Mass General Brigham Neuroscience Institute. Dr. Sarkis cares for patients at Brigham and Women’s Hospital.
In this article, Dr. Sarkis describes how lifestyle changes and tailored treatments can help you manage epilepsy symptoms.
Follow your epilepsy treatment plan.
It’s important to follow the treatment plan designed by your neurologist. If you haven’t met with a neurologist, talk to your primary care provider (PCP). They can help find a neurologist close to you.
Every person and every brain is unique, so different treatments may work for different people. Your treatment plan may include:
Surgery
If medications don’t control your seizures, another option is to pursue a brain surgery.
There are 2 types of brain surgeries:
- Resective surgery: This is when a neurosurgeon removes part of the brain. Your epilepsy care team first identifies the exact area of the brain where the seizures are coming from, and then decides if they can remove it safely. Your epilepsy doctor and your neurosurgeon discuss the risks and benefits of this surgery with you. They can share the chances of a cure, or the chances of improvement in seizure frequency.
- Neurostimulation devices. There are multiple devices available that are similar to pacemakers. These devices, such as those used in deep brain stimulation, can send electrical signals to the brain and reduce the frequency of seizures.
How to manage epilepsy with healthy lifestyle changes
These changes to your daily routine may help you stay healthy and reduce the risk of seizures:
- Get enough sleep. Sleep is important for your overall health, including brain health. Poor sleep can trigger seizures. Sleep at least 7 to 8 hours every night to improve brain health and follow these tips to sleep better.
- Take your medications as prescribed. Establish a medication plan so you don’t miss any doses.
- Eat a healthy diet. Diets rich in nuts, fruits, vegetables are known to be good for brain health. In patients whose epilepsy doesn’t respond to medications, there are certain diets that can be tried in coordination with a nutritionist. These include diets that are high in fat and protein and low in carbohydrates. The ketogenic diet, for instance, forces the body to use fats as energy instead of carbohydrates and reduces seizures for some people. Foods high in fat such as butter, heavy whipping cream, and oils are part of the ketogenic diet.
- Avoid substances that can trigger seizures, such as alcohol, prescription medications used without recommendation, or illicit drugs like cocaine, amphetamine, and certain opioids. When in doubt about a new medication, reach out to your doctor.
- Take care of your cardiovascular health by avoiding smoking and monitoring your blood sugar, cholesterol, and target blood pressure.
- Stay active. Exercise can help improve brain health and lead to other health benefits over time.
- Take care of your mental health and seek out a therapist or psychiatrist if you are struggling.
- Keep in mind that the Epilepsy Foundation has educational resources, and support groups available for you.
Share new epilepsy symptoms with your neurologist.
Each case is unique, so symptoms often vary. Even after your diagnosis, it’s important to tell your doctor about new symptoms or seizures to make sure you're on the right treatment and better understand your condition. If you experience seizures or other symptoms, work with family members or friends to document details of your seizures or your seizure patterns. Consider creating a seizure diary. You can also ask a family member or friend to try to record one of your seizures so you can share the video with your doctor.
Signs and symptoms of seizure
Some common signs and symptoms during a seizure include:
- Losing consciousness or becoming unresponsive
- Involuntary muscle movements
- Generalized shaking
- Auras. These are subjective sensations and can include sudden waves of discomfort arising from the abdomen, sudden anxiety, or deja vu. They may involve visual, sensory, taste, or hearing disturbances.
- Temporary confusion
- Changes in language
Epilepsy and mental health support
How do I respond to an epilepsy emergency?
Not all seizures are emergencies, and most only last a few minutes. However, it is important to know how to identify an emergency. A seizure becomes an emergency when it lasts a long time or when several happen close together.
Some signs of an epileptic medical emergency include:
- Seizures lasting longer than 5 minutes
- A second seizure happens without recovering from the first one, or the person doesn’t regain consciousness.
- A person not recovering well between seizures, such as not regaining consciousness or not breathing at all.
- Trouble breathing
- An injury occurs, or the person asks for medical help
If you or your loved one experiences a medical emergency, trust your instincts, and call 9-1-1.
What questions should I ask my doctor about epilepsy?
An epilepsy diagnosis can feel overwhelming and can raise a lot of questions. If you have concerns about your diagnosis or treatment, bring a list of questions to your doctor.
Some questions you may consider asking:
- How is epilepsy diagnosed?
- What medications may be right for me?
- What are my other treatment options? When would they recommend surgery?
- Can I drive again?
- Can I still participate in sports?
- How can I, or a loved one, maintain or improve my quality-of-life?
- When do I need to seek emergency medical attention?
- What are the symptoms I need to keep an eye on most? When do you recommend I notify your office if I see symptoms change?
- What are my treatment options if my seizures get worse?
- Are there any patient support groups or other resources you may recommend?
Epilepsy requires having a team of health care experts and educating people you trust to ensure your safety. While there is no cure for epilepsy, there are many treatments readily available to fit your condition.
“There are many studies occurring even as we speak with the hopes of finding a cure to epilepsy,” says Dr. Sakis.
