Epilepsy affects millions of people around the world, but many patients can control their seizures with the right anti-seizure medications. Close to 70% of people who take these medications can become free of their seizures while they are on the meds. Of course, there are still those who are not helped by antiepileptic drugs and who have to seek other treatments, such as surgery.For those who are helped by the antiseizure drugs, many of them who have been seizure-free for several years will be able to go through a withdrawal process with the drugs and remain seizure-free. However, that’s not always the case. Risks need to be assessed by doctors.
Is There Communication Between Patient and Doctor?
A recent study published in Epilepsy & Behavior looked into just how often patients who are free from seizures discuss the option of discontinuing the drug with their doctors. The study focused on patients in Norway.
One thousand one hundred seventy-two patients started the study. However, not all of the surveys were fully completed. Out of the initial batch, 469 of them reported that they had been free of seizures for at least 12 months, while 211 reported that they had been seizure-free for at least five years. Out of the 211 patients, 186 of them were still taking antiseizure medications.
The bulk of the study focused on those 186 patients. Out of all of those patients, 60 of them had talked with their doctor about the possibility of withdrawing from the medication. The researchers found that the patients who were more involved with the decisions regarding their treatment had a higher likelihood of talking about withdrawing from the drugs.
There have been several studies that have looked into the risks of allowing patients to stop taking antiseizure medications and how to better predict what the risks might be. However, there hadn’t much attention devoted to looking into how often the subject of drug withdrawal comes up between the patients and the doctors.
While some patients had talked with their doctors about the possibility of withdrawing from AEDs, it was not as many as some might have imagined. It was only about a third of the patients who had conversations with their doctors about the possibility of ceasing taking the medication.
It showed that not only were the patients not asking, but their doctors were not suggesting it. This was true even though the patients had not had a seizure in five or more years. One of the biggest reasons for the lack of communication regarding the withdrawal from antiseizure meds is fear.
Despite not having had seizures in years, the patients and the doctors are likely worried about the potential of relapse. They know if they have another seizure, it could cause some additional changes in their life. They may no longer be able to drive, for example. There is also the psychological worry that accompanies the stoppage of these medications. Some patients start to worry that it’s only a matter of time before they have another seizure.
Additionally, developing a plan for withdrawal from antiepileptic medications is not straightforward. No single withdrawal plan will work for all patients. Each patient is unique, and this means that each plan for withdrawal needs to be suited toward that individual and their condition. Before a doctor decides that withdrawal is a good idea, the patient should undergo a risk assessment. There are online tools that can help with the assessment. Doctors and patients should always discuss the benefits concerning the risks they are facing.