My Epilepsy Story

A Story of Pregnancy and Epilepsy

Cinthia L. Harden, M.D.NeurologyShe was young, beautiful, and newly married. I was the third doctor she saw, because she did not want to hear what the other neurologists had told her. The first neurologist told her she had epilepsy and that she needed to take medication. The second neurologist told her to consider brain surgery. I told her not to get pregnant. Apparently, she did not want to hear that either; on the day she was scheduled for her next diagnostic test, she called to tell me she was 8 weeks pregnant.

Her already frequent daily partial seizures became even more frequent during pregnancy, a phenomena that occurs for a minority of pregnant women with epilepsy, and is mainly due to induction of metabolism of antiepileptic drugs during pregnancy (1). Although we tried to manage her as an outpatient, I received a frantic call that she had had a secondarily generalized convulsion. I admitted her to the hospital for further treatment.

Upon visiting her in the hospital that first day, I found myself in the midst of a storm of conflicting emotions and concerns expressed by the patient and her family. All were motivated by love, and all pretty much agreed that I had to do something, and urgently, to stop the spells. I term her events “spells” because there was still denial as to the nature of the events, and there was family faction who were adamant that surely if the patient was not so stressed, the spells would resolve. Further, in the setting of ongoing seizures, medication changes and overall uncertainty, there was another vocal family faction who were adamant that she should not continue the pregnancy, that it was too dangerous for her, and I should urge her to consider this option. Several other family members were not at all concerned about medication risks during the pregnancy, and stated that if we could help the patient so that she was doing fine, the pregnancy would also be fine. I guess this is last part represents love mixed with superstition.

Which brings me to the patient herself, who was calm and thoughtful and who was valiantly trying to control her fears during this stressful hospital visit. She wanted to continue the pregnancy, yet was appropriately concerned about the medication risks to the pregnancy. She was as much in the middle of the storm as me, and was trying to honor her families’ views.

As the doctor in charge, my head was spinning in the midst of these vigorously stated opinions. And yet clearly, when epilepsy patients continue to have seizures, stopping the seizures becomes the overriding issue. When the seizures stop, decision making becomes easier. Here is my breakdown of this complex situation: The patient is my priority, and I must incorporate additional medical considerations for the pregnancy. There is a good chance overall for a normal pregnancy outcome. The patient’s priority is her pregnancy. The families’ priority is the well-being of the patient and their outlook is complicated by dealing with the implications of a new neurologic diagnosis in a beloved family member.

We navigated through the storm and with treatment, the seizures stopped readily. This enabled us to all get on the same page and decreased the anxiety that had become so pervasive in our communications. Is everything going to be fine? I think so, and I have statistics on my side, but we will know more about this when the bun in the oven is baked, so to speak. She is also considering enrolling in the MONEADs study (2) so that a chronicle of her journey could be helpful to other women with epilepsy. I probably share with other doctors the characteristic of wanting to be involved in substantial and meaningful decisions with patients; we treasure the thrill of being so close to our patients, and through knowledge and good sense, having the opportunity to help them. I would not want to be anywhere except in the eye of this storm.

[success]This article was written by Dr. Cynthia L. Harden.[/success]

1. Tomson T, Landmark CJ, Battino D. Antiepileptic drug treatment in pregnancy: changes in drug disposition and their clinical implications. Epilepsia. 2013;54(3):405-14.

2. https://web.emmes.com/study/monead/about.htm

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Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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