Frequently Asked Questions
Living with epilepsy can involve a number of specific challenges and concerns that vary from person to person. The below answers could help both patients and loved ones to better deal with epilepsy in day-to-day life.
Q: I just had my second seizure and was sent to the emergency room. My doctor says I have to take medication. Is my whole life going to change?
A: After two unprovoked seizures, the chances of having a third seizure are very high, so neurologists will usually recommend taking a medication at this point. Adjusting to a new diagnosis and having to take daily medication can be very hard. It is true that you may need to make some changes in your life to stay safe, so open communication with your neurologist is essential. The goal is to live without seizures and without side effects from medication so you can pursue the things that matter to you.
Q: I’ve had really intense déjà vu my whole life and recently started spacing out afterward. I am 28 years old and just went to a neurologist who says that all of these episodes were actually seizures. Is that possible?
A: Yes. Not only is this possible, it is not that unusual. Often a person will live with a symptom for years, like jerking of their arms in the mornings or déjà vu, without really thinking anything of it. As epilepsy doctors, it is our job to find out if someone has had small seizures that they have disregarded.
Q: I feel so scared during a seizure because my right arm will jerk back and forth, and I can’t control it. What is happening in my arm?
A: People often tell us that the most frightening part of a seizure is the loss of control. The seizure type you are describing is a focal aware motor seizure. During this seizure there is abnormal electrical activity in the part of your brain that controls your right arm. The most important thing to do during a seizure is to sit down, and if you can, call for help. Medication adjustment may help control these breakthrough seizures. Don’t hesitate to talk this through with your neurologist.
Q: My doctor admitted me for an electroencephalogram (EEG) and now tells me that the events I have aren’t seizures but are psychogenic. Am I going crazy? What do I say to my family?
A: Psychogenic events are a real problem and not under your control. You are not going crazy. This type of event is not uncommon. It is really good that you were admitted and that you and your doctor have a clear diagnosis. Often people with psychogenic events take an anti-seizure medication, which is not usually helpful. These events are confusing, and you don’t need to talk with your family by yourself; we are available to help and answer questions. The good news is these events are highly likely to improve or resolve. Therapy with clear communication between your therapist and your neurologist can be very helpful.
Q: I take three medications for my seizures and still get breakthroughs. My doctor wants me to think about surgery. But I don’t want anyone messing with my brain.
A: The really good news is that other choices may work better for you than medication. Feeling anxious about any surgery, particularly brain surgery, is normal. But don’t let that anxiety stand between you and getting more information. Seizures themselves “mess” with your brain. We recommend you sit down with one of our epileptologists to discuss surgical options and find out if you are a candidate. Once people have had epilepsy surgery, they often wish they’d had it done sooner.
Q: I’ve had epilepsy since I was young. I get one to two seizures per month if I take my medication and five to six seizures per month if I get sloppy. When I’m not having seizures, I have trouble remembering little things. I am only 30 years old; am I getting dementia?
A: Memory complaints in people with epilepsy are common. Ongoing seizure activity can make memory worse, so taking your medication regularly can improve your memory. If you are still having seizures when you take your medication, a change in your treatment might be helpful. An evaluation by a neuropsychologist can help us understand in detail your strengths and weaknesses, and then we can start a new therapy.
Q: My doctor told me that some people die of a seizure, usually at night. Now I don’t want to go to sleep! Is a seizure going to kill me?
Your doctor is talking about sudden unexpected death in epilepsy (SUDEP). This is very rare, occurring in approximately 1 in 3,000 people with epilepsy each year. You can lower your risk of SUDEP by taking your medication and working closely with your doctor to control your seizures. Good sleep is also important. If the anxiety about SUDEP is keeping you up, talk with us and get support.
Q: My wife had a seizure last week for the first time. We went to a neurologist, who said she has epilepsy and gave her medication. I don’t think she should ever be alone. I’m trying to stay in the same room with her at all times. What else should I do to keep her safe?
A: Seeing a seizure occur can be incredibly frightening and traumatic. The most important things for her safety are to take her medication, take good care of herself in general, and avoid driving a car right now. It is probably not necessary for you to stay with her at all times. Living as normal and independent a life as possible is a goal for people with epilepsy. Do sit down with her neurologist to discuss your concerns. It’s essential that you take care of yourself as well.
Q: I’ve had epilepsy since childhood. The good news is that I haven’t had a seizure for years. The bad news is that I don’t like to leave the house because I feel vulnerable. This has been working for me, but this year I want to take an art class and I feel afraid.
A: It sounds like you may have developed an anxiety disorder around your seizures as a child. Now, your seizures are better but your anxiety isn’t. This is not uncommon and you are not alone. It’s wonderful that you are thinking of taking an art class. Therapy, particularly cognitive behavioral therapy, is likely to be very helpful. Medications targeting your anxiety might help as well. The most important thing is that you keep talking about this with your doctors. At Mount Sinai, our psychiatrists are available to help.
Q: I am 38 and was diagnosed with epilepsy last month. I don’t know if I should tell my bosses or the people I work with about my seizures. What if I have an episode at work?
A: There is no right or wrong answer to this question. Telling people around us about our medical conditions is a personal decision. If you do want to tell people in your work place, we support this and are available to provide more information and education if necessary. Regardless of your decision, wearing a medical alert bracelet or necklace can help you get good care should you have an unexpected seizure.
Q: I was recently diagnosed with Epilepsy. My parents are scared because they feel unprepared as they do not know how to help me during and after a seizure?
A: You could share this Seizure Tip Sheet with your parents and loved ones, our Epilepsy team has prepared it with simple and clear instructions on what and what not to do when someone is having a seizure. At Mount Sinai, we are available to help you with a treatment plan that works the best for you and support you and your family to understand life with Epilepsy.