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What the Doctor Should Say
After the Word “Seizures”
Introduction Dr. Morris: This educational series is produced for the purposes of informing individuals about key areas with respect to seizures and epilepsy. Why is such a series necessary? It is necessary based upon common concerns that are voiced every day in discussions with patients. In any discussion of epilepsy, issues arise that touch many aspects of peoples’ lives. This series is designed to address the initial concerns that individuals and their family members may have when the word “seizures” is first mentioned. The first of this series is a general overview, which we have appropriately named “What the Doctor Should Say After the Word “Seizures””.
For some it seems to begin with “I think after hearing what you have had to say and reviewing your records, the most likely diagnosis for what is going on is that you are experiencing seizures.”
It is hard to say what someone can think at that moment but ”Seizures?”
It is necessary initially to talk about several additional things that are very important following hearing that seizures are a possible diagnosis. You should know seizures are very common in the United States. One in ten Americans reaching the age of 80 will experience a seizure at some point, and well over one percent of the American public at large experiences these seizure activities on a reoccurring basis, and therefore has the diagnosis of epilepsy. Importantly, epilepsy has nothing to do with needing to wear helmets or other stereotypes that people hear of. Well over 185,000 people each year present with recurring seizures, or epilepsy, and many misconceptions exist about seizures and epilepsy. First of all, seizures and epilepsy are for the most part not genetic. They are not a childhood illness, for the majority of individuals, but an illness that starts in adulthood. 80% or more of seizures occur in individuals in adult years. In fact, seizures become more common as individuals become more mature, and may be as often as 2-3% in a population over the age of 65. Most importantly, people with seizures are a very diverse group of individuals, and generally speaking indistinguishable from the population at large.
Patients will be stunned and ask “Certainly they could be something else. Based upon what I have said, couldn’t this be something else?”
Certainly that’s true, and we will do our utmost to exclude other possibilities. The diagnosis of seizures is for the greater part based upon the history that is provided by the patient when they come to see the doctor. We compare the information provided with certain known manifestations of seizures. Seizures generally fall into two categories. The first is generalized. These consist commonly of a staring episode, referred to as absence, tonic clonic seizures, which are episodes of initial stiffening followed by shaking, and on some occasions brief jerks of the body or limbs, referred to as myoclonus. The second major seizure type is partial seizures. Partial seizures begin in a localized area of the brain and then may spread. Their start is reflected by the part of the brain that they start in. So if an area involving memory is where the seizure begins, patients may have sensations of memory described as déjà vu. If they begin in areas of smell, then the patient may actually sense an unusual odor. The histories we take, of course, therefore need to contain questions about the beginnings of the seizure. These questions would include any feelings that may have occurred, and then what other individuals can tell us about the way they appear, for example if someone loses awareness of their surroundings. Certain other illnesses can produce lapses in awareness of surroundings, and we will do a test to exclude illnesses such as diabetes, fainting, or anything else that may mimic a seizure.
With the information we have obtained from the history and physical, we will start to assess the structure and function of the brain. The structure and function of the brain are quite separate issues. We use MRI, which stands for Magnetic Resonance Imaging, to show us how the brain appears. Brains can frequently appear normal, but we perform MRIs to exclude important possibilities such as blood vessel abnormalities like aneurysms or brain tumors, or evidence that a prior head injury has actually produced some damage to the brain. Most MRIs are normal, and that is an important thing for someone with seizures to know. Having an abnormality is actually not a desirable feature. A normal appearing brain often means that seizures may be easily controlled and stopped with medications. The electroencephalogram (EEG), or brain wave test, is something we use to determine how well the brain is functioning. The EEG has normal brain waves. These normal brain waves occur in all individuals, and their absence and the presence of abnormal forms of brain waves, can tell us things about the functioning of the brain. These abnormal brain waves can indicate that epilepsy is a possibility. It can further tell us what kind of epilepsy the individual might be experiencing. The stiffening and shaking seizure, called a tonic clonic seizure, can occur in both the partial and the generalized category. EEG abnormalities that occur between seizures can actually help us determine which of the two situations is more likely. Again, many EEGs, like MRIs, are normal and suggest that the frequency of a brain wave disturbance is smaller. This, in fact, can be a good sign, and so a normal MRI and a normal EEG may in fact be a common thing to occur in the course of evaluating the seizures, and in fact may suggest that seizures won’t reoccur.
The next step is treatment. We have to approach treatment as an issue of the quality of life. Sometimes medications are not necessary. Certain types of seizures may be related to low blood sugar. Of course, the treatment is fixing the low blood sugar. However, in other situations medications are necessary to make the seizures stop occurring. Now, what we have to do is make this treatment enhance the ability to function and not detract from it while being protected from the seizures. The treatment with medications has to be, first of all, effective, second of all, convenient, and third of all, it has to have side effects that the patient finds tolerable if they occur at all.
The good news is we have many medications that are very successful in carrying out the requirements that described. Modern medical therapy for thetreatment of seizures began as late as 1912 with the use of Phenobarbital. Now, a dozen other medications are used today and are very successful. These treatments generally need to be taken either once or twice a day so people remember to take them. They shouldn’t interact with other medications used for other illnesses, and their side effects should be minimal, if at all. Obviously, if medications cause significant side effects, they are detracting from someone’s life and need to be avoided. Medications need to be taken on a regular basis because effective treatment suppresses seizures best when medicine levels stay at a certain amount in the blood stream. The dosing frequency of medicines is designed so that the amount of medicine in the bloodstream does not fall so low that it cannot protect against seizures. Many of our modern medications can be taken once or twice a day, and this is most effectively done at mealtime. Placing the medication where it will be seen each day is a very effective strategy for remembering it. Once someone has been on the medicine for a period of time, we will draw blood samples. Blood samples will tell us what the level of the medicine is in the blood stream, since the amount of medicine in the blood stream has to be within certain ranges to be effective. Other blood tests that reflect any difficulty the medicine may cause, such as negative effects on the liver, will also be checked with blood tests. These side effects are very infrequent. For successful treatment, a physician will need to supervise medications by seeing the patient on a regular basis. The physician must make sure that there are no undue problems from taking the medication, and that it is working effectively. Of course, if at any time someone forgets or misses medication dosages, it is appropriate to make them up at the earliest convenient time. If several doses have been missed, sometimes it will be appropriate to take additional doses over several additional times.
Patients worry about the future like anyone else. These include concerns women may have about their reproductive health. “But I just got married. I am thinking about starting a family. Will this affect my child?”
First of all, let me assure you that you should be able to lead a successful, normal life and that the treatments that we employ are effective. This success includes reproductive health. It is important for us to keep in mind that some of our seizure medicines can reduce the effectiveness of birth control pills. So if you are a women using birth control pills, then it would probably be wise to make sure that they are not going to interact with your seizure medicines. Both the seizure medicine and the birth control pills can be made ineffective. That, of course, will depend on which medicine you take.
When considering beginning a family, it would be wise to know some things about seizure medicines and pregnancy. For years we have known that women who take large doses of seizure medicines or multiple seizure medicines may be at some increased risk for a maldevelopment of the fetus. These maldevelopments, although rare, may include what are considered minor maldevelopments such as increased space between the eyes and narrowing of the fingertips or small fingernails, or they may be considered major and include abnormalities such as cleft lip and palate or spina bifida. Having heard that there are potentially some serious effects on the fetus, it should be pointed out that many of these effects are seen independently of medication. In fact, these are sometimes seen in the children of men with epilepsy, and so may be potentially, partially genetic in origin. While no seizure medication can be considered “safe”, malformation rates are rarely excessive and major malformation rates are relatively few. The vast preponderance, as much as 98%, of women delivering children on seizure medications are normal. So, while seizure medicines may triple the risk of a major malformation, that tripling of the risk constitutes a very small additional risk for someone having children on seizure medicines. We have certain rules in counseling of women who have seizures. These include encouraging them to avoid alcohol and tobacco, which provide significant risks in and of themselves, and probably more risks than seizure medicines. We attempt to keep drug concentrations in the blood stream at the lowest possible level during the earlier portions of pregnancy. Studies have suggested that smaller doses and fewer medications are related to a lower risk for any fetal abnormalities. In addition to that, we supplement many vitamins including folic acid, and this is an important addition to a pregnant woman’s regimen that will minimize any risks from malformations. Pregnancies sometimes increase seizures, but in fact they tend to decrease them at the same rate. So, if and when asked, I encourage women to pursue a normal reproductive life relative to their seizures and to simply allow their physician the opportunity to help them do that at the earliest possible time.
Well, fortunately this is potentially not forever. Patients will ask, “So, that’s it? This is forever? I have epilepsy?” In many situations, individuals who initially have a seizure that is well-treated and additional seizures do not occur, the brain undergoes a healing process. During this healing process brain cells that have learned to make seizures can forget how to make seizures, and after periods of two – five years we often find that discontinuation of seizure medicines is possible on a gradual basis, as the brain has clearly had this healing process take place. It is, in fact, very important that good treatment occur early on so that this can be more likely for a given patient. Obviously I tell patients this so that it will encourage them to be conscientious taking the medicines, so that they can experience this period of seizure freedom and allow the brain to heal. The MRI and the EEG help us make predictions about who will be a good candidate for being off medications or in remission. If the EEG or the MRI were abnormal and become normal, this is certainly very good evidence to suggest that medication can be withdrawn. While it is certainly possible that a patient may experience a remission of the seizures, it is also possible that seizures will continue, and we will have to change medications. Please keep in mind that this process of treating seizures is going to be something that you and the physician are going to work on over a good length of time. If seizures occur, which they do in as much as half the patients who start medication, that either higher doses of the medication or other medications will be the appropriate course of action to take.
While there are many other things that need to be discussed over the course of the visits, hopefully this answers most of the questions for the time being. I do recommend that you write down additional questions and bring them to the next appointment.