NEXT UP: Part II of “What Is Uncontrolled Epilepsy” by
The team at EFMNY would like to thank you for your questions! After each article we feature, we’ll post answers from our experts to the most frequently asked questions we receive. Please note that these Q&A posts, like our articles, should not be taken as medical advice. Each patient is unique. For medical advice regarding your specific condition, please consult your doctor. For more information about epilepsy (a.k.a. seizure disorder), visit our website by clicking HERE.
Q&A with Dr. Stephen Karceski:
1. ”I have tried every medication; some seem to work for awhile but then my seizures come back. How common is this and why is it only for up to a year, more or less that the medication helps?”
You are not alone. Many people experience an improvement in their seizures. Then, after about 3 months (or more), the seizures gradually return to the previous frequency. No one knows why some people have this experience. However, this is an active area of research – we may know much more about this in the near future.
2. ”I’m not a candidate for surgery and am not interested in the ketogenic diet. I am in a support group where a few persons have VNS but that hasn’t eliminated all their seizures, though it has helped. Is there a point when a doctor concludes seizure reduction is good enough?”
The goal is simple: no seizures and no side effects. However, in people who have refractory epilepsy, most doctors agree that goal changes slightly: minimize the seizures, and cause no side effects. The reason for this is that the liklihood of stopping the seizures in refractory epilepsy, depending on the cause and circumstances, may be low. This does not mean that the liklihood is zero: in some cases, epilepsy surgery has an excellent chance of stopping the seizures.
Most doctors will continue to try to adjust treatment(s) until the seizures are at their minimum – again, with little or no side effects. There is no “cut off” or number. Here again, the answer depends on th eperson and the kind of seizures that they have.
3. This article scares me a bit. Right now I only have seizures when I am dehydrated and my last one was a few years ago. I drive, have a girlfriend and a good job, and have been told by my doctors I don’t need medication. Am I being given bad advice?
When seizures are provoked by specific circumstances, it makes sense to avoid the trigger. This is true for all people with seizures. If there is a specific trigger for their seizures, like sleep deprivation, the person needs to do their best to obtain good, consistent sleep. In other words, it sounds like you are doing exactly what you need to do to prevent your seizures from happening.
4. ”If the percentage of total control is low after two medications don’t work, why does my doctor keep on wanting to try more drugs?”
There are many reasons to continue to try new medicines. Although the chance that medications will completely stop refractory seizures is low, that does not mean that the seizures cannot get better. In addition, a doctor may change medication(s) in order to reduce or stop side effects.
5. ”What percentage of people who don’t respond to medication will gain control with other treatments?”
A tough question to answer. The reason for this is that the response to other treatments often depends on the kind of epilepsy and its cause. The best way to find out how likely your seizures will respond to certain treatments is to ask your doctor.
6. ”I only have an occasional partial seizure and feel good about my life.
You mentioned injury and though rare, unexplained death. I’ve always been told that I am at low risk for serious harm. Should I be worried?”
The risk of sudden unexpected death is rare in people with epilepsy. Although the exact cause is unknown, people who are most at risk for this are those who continue to experience poorly controlled or refractory convulsions (also called generalized tonic-clonic seizures). This is an active area of research. By understanding this rare problem better, doctors will be able to do much more to prevent it.