Ask Your Doctor
Living with No Seizures and No Side effects IS a realistic goal. If you are still experiencing either, you should talk to your doctor about:
Treatment Options
When seizures or unpleasant side effects from the medicine are affecting your life, find out if there are other things that you might try. You can explore them with your health care team by asking:
- Would I do better on a higher dose of just one medicine? Is there a different medicine I could try?
- Are there any new drugs for epilepsy that might work for me?
- Should I have a blood level test to see if the dose I am taking is at the right level in my blood?
- Should I see a neurologist or got to a special center for more testing?
- Would the ketogenic diet work for my child? Is there a dietitian who has experience with the ketogenic diet associated with this plan?
- Do I have the kind of epilepsy that might be treated by surgery?
- What are the risks and benefits of surgery?
- Would the VNS (vagus nerve stimulation) device help me (or my child)?
Seizure Management
Ask your doctor what should be done when your child has a seizure. Ask what you should tell members of your family to do if you have a seizure:
- What’s the best first aid for my kind of seizure?
- Should the paramedics or an ambulance be called every time?
- What would be an emergency for me or my child?
- How long should I wait before calling an ambulance if the seizure goes on longer than usual?
- Are there any in-home treatments for clusters of seizures, or seizures that last longer than usual, that I should know about?
- Should I let my doctor or nurse know whenever I have a seizure, or just at check ups?
How You Feel
Many people with epilepsy have memory problems, depression, or anxiety. These experiences may be related to the epilepsy or the type of medicine that is being taken. Learning disabilities and problems with attention, thinking or behavior may also be caused by the same brain condition that is producing seizures, or the medicines that control them. So if you or your child are having any of these problems, tell your doctor or nurse. You might ask:
- Could the fact that my child is not doing well at school be caused by the medicine he or she is taking? Or is it more likely due to the seizures or a learning disability?
- If it might be the medicine, is there another medicine that we could try?
- Could the medicine be making my child act up? Or is this all part of what’s causing the seizures?
- Should I have my child tested for learning or attention problems, and can you tell me where I could get this done?
Pregnancy
If you are a woman who is taking medication to prevent seizures, and you want to start a family, make an appointment to tell your doctor about your plans before you become pregnant. Questions to ask include:
- Should I continue to take my current medication while I am pregnant?
- Are there any changes in my treatment that should be made?
- Would having seizures hurt the baby?
- Are there any risks to the baby from the medicine I am taking now?
- Is there anything I should be doing to reduce any risk? Should I be taking folic acid?
- Will you be checking with the doctor that I’ll be seeing during the pregnancy?
- How often do you want to see me while I am pregnant?
- Will I be able to nurse the baby if I am taking medicine for epilepsy?
Epilepsy Centers
When seizures are very hard to control, you may want to ask your doctor about going to a special center that specializes in epilepsy, or you may decide to look for one on your own. Epilepsy centers offer different kinds of services and staffing. Before making a decision, you may want to ask:
- What services or tests do I need, and does this center offer them?
- Does the staffing include the kind of medical specialists I need? Are there others (for example, psychologists or social workers) to help with special problems?
- Does this center help people with referrals to services offered in other places, such as helping people who want to find jobs?
- Does the center provide patient education? How does it help patients and families with problems related to epilepsy?
- How much does it cost? Are fees fixed or is a sliding scale used?
- What does the center do to help patients pay for the services?
- When you have found (or been referred to) a new doctor or treatment center, you will want to ask your doctor to send copies of your records to the new doctor who will be treating you. Click here to find a comprehensive Epilepsy Center.
Depression
If you think you might be suffering from depression, ask yourself the following questions:
- Do I have long bouts of sadness? Do I cry for no reason?
- Have I lost my interest of joy in life?
- Have I had changes in eating habits resulting in major loss or gain in weight?
- Have I had a change in my sleeping habits resulting in difficulty sleeping or sleeping too much?
- Am I irritable, anxious?
- Do I have difficulty getting things started? Do I have a lack of energy? Am I always tired?
- Do I have low self-worth, or a loss of hope? Do I feel inappropriately guilty?
- Do I have poor concentration? Is it difficult for me to make decisions?
- Do I have thoughts of death or suicide that won’t go away?
If you have answered yes to five or more of these symptoms and feel this way continuously for two or more weeks, you may be suffering from what is called a major depressive disorder (MDD). Treatment may be needed. Additionally, if you are having intermittent or continuous thoughts that life is not worth living, depression may be present as well, and treatment is indicated.
People who have infrequent or less intense symptoms may also require treatment. A good rule of thumb is to watch your own reactions to the world around you. If you feel that some of the listed symptoms are getting in the way of your enjoyment of life, especially the quality of your relationships with others, then you may be suffering from depression.
Fortunately, there are effective ways of treating depression. It’s important to talk to your doctor about how you are feeling and ask about treatments that might help.
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