Epilepsy treatment can involve a number of medications and interventions. In addition to the difficulties in managing this condition, many people face challenges and barriers to getting adequate care. Despite these obstacles, it’s important that you get proper treatment for your epilepsy.
Seizures can be distressing, as well as dangerous to your overall health.1 In some situations, you may need to reach out for help from your medical team, a social worker, your family, a professional caregiver, or a support group to be able to get the care you need.
This article will discuss the barriers to care and how to manage them, including costs, medication side effects, medication consistency, medical appointments, support groups, and associated conditions.
The costs of epilepsy care can be high. Care can include medical visits, diagnostic tests, medication, treatment interventions, and special services.1 Generally, health insurance covers the costs of basic epileptic care, but at times you may feel overwhelmed by the price of your treatment, your co-pays, deductibles, and the accompanying documentation.
“If you don’t have health insurance, or if you are having difficulty signing up for health payment coverage contact your local epilepsy non-profit organization to see if they can assist you. Make an appointment with one of their case managers who can help you learn about your options (EpilepsyU.com)”.
Costs of your care can be staggering if you don’t have adequate health insurance. Because your medical condition may prevent you from working, you may not have access to quality health coverage since many plans are linked to full-time employment.
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You might have minimal or no side effects from your epileptic medication, but, on the other hand, your medication may give you intolerable side effects. Antiepileptic drugs can cause a range of side effects, including dizziness, lightheadedness, balance problems, sleepiness, and trouble concentrating.
You may need treatment for your side effects, or your doctor might adjust your anti-seizure medication. This way, you will have fewer side effect symptoms without compromising your seizure control.
Ways to minimize side effects of antiepileptic drugs include:
- Take your medication at the same time every day.
- Get enough sleep.
- Eat a healthy diet.
- Avoid alcohol and recreational drugs.
Additionally, your doctor might need to order some surveillance tests to monitor for side effects, such as blood count changes.
It can be hard to remember to take your medication daily if you have multiple doses per day. And remembering to get your prescriptions refilled on time isn’t always easy, either.3
Skipping anti-seizure medication is dangerous. It can cause you to have a seizure—even a severe seizure. Medication adherence is one of the most important ways you can manage your epilepsy.
Some tips to take your medications as directed include:
- Consider talking with your pharmacist, a social worker, or another patient-care specialist at your doctor’s office to develop a plan for home delivery or automatic renewals of your prescriptions.
- Pillboxes labeled with the days of the week and times of the day can help you keep track of when to take your medicine and whether you have taken your medicine already.
- You might consider an alarm or another electronic reminder to take your medicine.
- A family member can also fill your pillboxes for you, remind you to take your medicine, or give it to you when it’s time for you to take it.
Getting to the doctor for all of your medical visits can be difficult, especially if you don’t have a car or if you don’t drive.
Complicated issues in epileptic care, such as surgery evaluation, require frequent visits with your medical team. Working with a case manager can help facilitate these issues so you will be able to follow through with your evaluation and treatment plan.2
You might also be able to get some of your medical care via telehealth—healthcare visits from home using electronic devices like a cellphone or computer. While you will need some in-person care, your medical team may be able to provide some of your care remotely.
For example, your doctor may recommend that you or a family member record your seizures while they are happening and send the video to your doctor’s office.3 You may be able to discuss your symptoms and plan for your care via a telehealth visit, which can reduce the need for physically traveling to the doctor’s office for each visit.
Having epilepsy can make you feel isolated and alone. You might not know what to expect and you might feel that most people around you do not understand what you are going through.4
You and your family may benefit from joining a support group for people who have the same type of epilepsy that you have. You can provide each other with encouragement, advice, realistic expectations, and more.
Support groups can be a source of useful and practical tips for navigating your medical condition. However, check with your doctor before following advice concerning your medical care or medication dosing because what works for others may not be right for you. It could even be dangerous. Your doctor will know best what is beneficial in your specific situation.
Epilepsy may or may not co-occur with other medical problems. It can be one aspect of several different medical syndromes that affect physical and cognitive development.4
For example, epileptic seizures are a common characteristic of Down syndrome, and they can occur after a stroke. You might also have other unrelated medical issues along with your epilepsy.
If you are managing other medical problems as well as epilepsy, you could be juggling many symptoms, appointments, procedures, and medications. It can be hard to keep track of everything you need to do to stay healthy, which can compromise management of your epilepsy.
Consider asking your case manager whether you can have a home health aide come in to check on you and assist you with your medical care. And if living at home is not feasible or safe for you, moving to an assisted living facility with nursing care could be a way for you to stay safe and healthy.
Epilepsy is a complex condition and brings with it several challenges and barriers to care. Being aware of these challenges can help you seek support and find solutions in order to receive appropriate care.
Costs can be overwhelming if you don’t have health insurance. Medication may have side effects and you might have difficulty consistently taking it as prescribed. You may need alternative solutions and help getting to appointments. Some people with epilepsy have other health conditions that need to be addressed, as well. Support groups may be helpful.