When someone you love has epilepsy, their doctor can help with more than medication refills or test results. Doctors can also connect you with tools, referrals, paperwork, and support programs that make daily life a little easier.

With so many parts of epilepsy care to cover, your doctor may not know which kinds of support would help most unless you ask.

Here are some topics to bring up at your next epilepsy appointment.

Everyone knows that doctors can prescribe medication. But they can also prescribe items you might otherwise have purchased over the counter. Sometimes, this can help you save money on medical costs.

Ask your doctor about prescriptions or programs to get supplies, like epilepsy sunglasses and medical alert bracelets, that may be covered by your health insurance plan or a nonprofit organization.

Even if you can’t get help with the cost, your doctor can suggest reputable brands and tell you what to look for. “I wear a medic alert bracelet,” said one member. “I have since my diagnosis because my healthcare provider recommended it.”

Your doctor can also tell you about helpful new tools. For example, apps can help track seizures, and devices can help with daily tasks. Your loved one’s provider may be able to suggest tools or resources you hadn’t thought of.

Clinical trials may give people a chance to try new treatments. Some anti-seizure medicines and medical devices are still being tested and aren’t widely available yet.

Many new treatments are being studied for epilepsy. From implanted devices to surgeries and targeted medications, it may be worth asking about trials that could be right for you.

“Hi all, letting you know I’m part of a clinical trial. I’m now in the open-label stage,” said a MyEpilepsyTeam member. “Since June, I’ve seen a 99 percent reduction in my almost impossible-to-control seizures. For me, this is a miracle drug,” they shared.

Doctors, especially those specializing in epilepsy, are most likely to hear about these upcoming research studies first. Talk with your healthcare provider before trying a new treatment or signing up for a clinical trial.

You may learn about clinical trials through your provider’s office or your own research. Talk with the healthcare professionals running the trial. Also, ask your doctor for medical advice before signing up.

Some people with epilepsy qualify for disability benefits if they can’t work. However, applying for disability can be complicated. You’ll need to prove your case.

In addition to personal identification and work documents, such as past W-2 forms, you’ll also need medical records and reports from your doctor.

“I have an appointment with a doctor for my disability medical review,” wrote a MyEpilepsyTeam member. “I’m nervous about it. I don’t think the doctor will approve me to get disability benefits because they’ll think I’m not sick enough and could work if I could get a job.”

Be honest with the doctor about how epilepsy and any other health conditions affect daily life. Without that full picture, they may not understand how much support you need at work and home.

Try to be patient with the process. An experienced doctor can help you know what to expect based on other people in similar situations.

Caregivers for children and adults with epilepsy may need extra support. Caregiving can be a challenging responsibility. If a caregiver has a medical emergency or simply needs “the gift of time” to recharge and care for themselves, respite care may be available to help.

Respite care is temporary assistance with caregiving duties, ranging from a couple of hours to a few weeks. Insurance companies don’t usually cover the cost of respite care, but Medicare and Medicaid sometimes do.

Applying for coverage can require some help from your loved one’s doctor. They may need to confirm that respite care is medically needed and provide records about your loved one’s medications and epilepsy treatment.

Respite care for children with epilepsy may happen in the child’s home, a child care center, or a group home. Additionally, there are exchange programs where families can arrange to take turns providing respite care for others in similar situations.

You can find additional information from the Epilepsy Foundation or the ARCH National Respite Network. Asking your child’s doctor about local programs and resources is another proactive way to learn more about your options.

Your loved one’s neurologist or primary care doctor may not have all the answers. But they can connect you with other specialists who can help.

For example, if you’d like to learn more about a ketogenic diet for epilepsy, ask for a referral to a registered dietitian nutritionist. If your loved one is struggling with mental health issues related to their diagnosis, a psychiatrist or counselor could offer great support.

One MyEpilepsyTeam member shared, “I saw my primary doctor this morning. Having a long discussion with her led me to find counseling.”

Your doctor may also refer you to a social worker or case worker. These professionals can help you navigate:

• Paperwork
• Finances
• Work
• School
• Daily life with epilepsy, such as cleaning, cooking, and laundry

“I saw my primary doctor this morning. Having a long discussion with her led me to find counseling.”

— A MyEpilepsyTeam member

They can also direct you and your family members to local support groups and seizure first aid training, so you feel prepared for emergencies.

Asking for help during appointments can help you find other professionals who can offer support.

Living with a medical condition like epilepsy can be scary for you and your loved ones. A seizure action plan designed by a doctor and the people closest to you can give everyone peace of mind. It’ll give them clear steps to follow if a seizure happens.

Your seizure action plan will detail your seizure types, seizure triggers, and seizure activity. It’ll also tell others how to keep you safe if there’s a loss of consciousness.

Having all this information in one place can help you feel more prepared when a seizure happens. The Epilepsy Foundation has several free resources to download, so you can get started on a seizure action plan at home.

Once you complete each section, bring the packet to your doctor’s office for feedback and approval. Knowing your doctor and loved ones have the same plan can make life with epilepsy feel a little less stressful.

Join the Conversation

On MyEpilepsyTeam, people share their experiences with epilepsy, get advice, and find support from others who understand.

What kind of support have you found? Let others know in the comments below.