Doctors can be a wealth of resources, but sometimes you need to ask for the additional information you need. With so many priorities for epilepsy management, doctors may not realize all the types of support you or your loved one might benefit from. Here are some topics worth bringing up at your next epilepsy appointment. Your doctor may offer connections to helpful programs and set up referrals to improve your loved one’s life with epilepsy.
Everyone knows doctors can provide prescriptions for medication. But they can also prescribe things you might have otherwise purchased over the counter and 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 health care provider recommended it.”
Your doctor can also let you know about the latest helpful technology, like apps to track seizure activity or devices that can make life easier. Engaging with your loved one’s provider can lead to helpful suggestions you may not have thought of alone.
Clinical trials provide opportunities to try cutting-edge treatments, anti-seizure medications, and new medical devices that aren’t otherwise available to the public. You may learn about clinical trials through your provider’s office or your own research. In addition to consulting the health care professionals in charge of the trial, you’ll want to talk to your doctor to see if they have any medical advice or guidance before signing up.
There are a lot of exciting new therapies in the world of epilepsy. From implanted devices to surgeries and targeted medications, it’s worth checking in to learn about emerging trials that might be right for you. Doctors, especially those specializing in epilepsy, are most likely to hear about these upcoming research studies first. So always get information from a trusted source by discussing treatment options with your health care provider.
Some people with epilepsy qualify for disability benefits if they can’t work. However, applying for disability can be complicated because you need to prove your case. In addition to your personal identification papers and work documents (like past W-2 forms), medical records and reports from your doctor are required.
One MyEpilepsyTeam member described feeling anxious about meeting with a doctor for disability approval. “I have an appointment with a doctor for my disability medical review. I am nervous about it. I do not think the doctor will approve me to get disability benefits. I think the doctor will not feel I am not sick enough and could really work if I could get a job,” they explained.
It’s important to be open with the doctor and share your struggles of living with epilepsy and any other health conditions. If they don’t have a clear picture of how your health impacts you at work and home, they may not realize the full extent of epilepsy’s effect on your daily life. Just be honest and patient with the process. An experienced doctor can help you know what to expect based on their experiences with other patients in similar situations.
Caregivers for children and adults with epilepsy may need extra support occasionally. Caregiving is a challenging responsibility. If you have a medical emergency or simply need “the gift of time” to recharge and care for yourself, 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 assistance from your loved one’s doctor to help verify the medical need for care and provide documentation for their medication and epilepsy treatment.
Respite care for children with epilepsy may happen in the child’s home, a day 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 be a gateway to 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. And 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 can connect you with a social worker or case worker to help navigate paperwork, finances, work, school, and other aspects of daily life with epilepsy. 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 the help you need during your appointments can open up the chance to connect with a team of professionals ready to share more support.
Living with a medical condition like epilepsy can be scary for you and your loved ones. That’s why putting a seizure action plan in place with a doctor and the people closest to you can give everyone peace of mind and equip them with the right steps to take when a seizure strikes.
Your seizure action plan will detail your seizure types, seizure triggers, and seizure activity, along with how others should react to ensure your safety during a loss of consciousness. Having one location for all of this information can help you feel more in control of seizures when they occur. 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 that you, your doctor, and your loved ones are all on the same page takes some of the edge off when living with epilepsy.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 115,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
How does your doctor support you and your loved ones in managing seizures? Share your experience in the comments below, or start a conversation by posting on your Activities page.