Answers to additional questions

Below are answers to additional questions asked about the epilepsy show.

Beth asks: I had advanced Lyme disease in 1993, resulting in MRI documented demylination of brain and cord. I had a grand mal seizure 4/01. MRI and 24 hr EEG were normal and no seizure source identified, though I was on Detrol at the time. No treatment at that time. I had another grand mal seizure 9/03 while on vioxx. 24 hour EEG normal, MRI at Jefferson showed normal hippocampus and unchanged white matter brain demylination from previous studies. I am under the care of Dr. Stephen Lewis at Abington Hosptal and saw Dr. Joyce Liporace at Jefferson for consult. I have been told that the Lyme disease and resultant CNS damage with other meds being taken at the time of the 2 seizures are the cause of the epilepsy I am diagnosed with. I take Keppra 500 mg BID and tolerate it well. Do you agree with this treatment and how long do you keep patients on this medicine? Thank you.

Dr. Susan T. Herman responds: Beth, seizures can rarely be seen in patients with demyelinating disorders, such as multiple sclerosis and Lyme disease. As you say, this is usually secondary to brain injury from the demyelinating disorder. When a patient has had two or more seizures, there is a high risk of further seizures, and antiepileptic medication is usually prescribed. Keppra is a well tolerated newer antiepileptic drug which is effective for partial-onset seizures. If you are tolerating this well and are not having seizures, this seems to be a reasonable therapy for you. One of the most difficult problems is deciding when to stop antiepileptic medications in people who have rare seizures. We usually recommend a seizure-free interval of at least two years before we would taper and discontinue antiepileptic medications. An EEG test prior to stopping medications is sometimes helpful. If the EEG shows epileptiform discharges, the risk of having another seizure after stopping medications is higher, in the range of 60 to 70%. Even if the EEG is normal, however, the risk of recurrent seizures after medication withdrawal is between 30 and 50%. Therefore, the decision to stop medications must take into account possible ramifications of having another seizure (driving, risk of injury, etc). For further information, call 1-800-789-PENN.

Maureen asks: My son is 10 years old and has had seizures since he was 2 1/2...Infantile Spasms and to date are Myoclonic seizures. He seizes daily(5-10 clusters) and has been on every med, has the VNS and has been on the ketogenic diet. He currently is on Triple Bromide. Still seizes daily. Is there long term side effects from this drug and is there anything left for him as far as meds?? Thank you Zipcode: NJ

Dr. Susan T. Herman responds: Maureen, I am sorry to hear about your son's difficult to control epilepsy. Myoclonic seizures are often the most difficult to treat. It sounds as if he has been tried on most of the available seizure medications, as well as the vagus nerve stimulator and the ketogenic diet. Since I'm not sure exactly which medications your son has taken, so I can't give recommendations. One of the less commonly used medications is a medication called Felbatol. This has good effectiveness for myoclonic and atonic (drop) seizures. It use is limited by the potential for serious side effects, including aplastic anemia, a potentially life-threatening blood disorder, and liver failure. In patients with very difficult to control seizures, however, the risks of continued seizures often outweigh the risks of side effects. This may be worth discussing with your neurologist. Keppra, one of the newer antiepileptic drugs, may also be very effective for myoclonus. Its main side effect is behavioral (irritability, mood swings, aggression). Triple bromides can have long term side effects. These usually occur when toxic doses are given over long periods of time, since bromides can accumulate in the body. Common symptoms of toxicity are weakness, tiredness, loss of appetite, and worsening of memory and cognitive function. There is sometimes restlessness and headache. Close monitoring of blood levels is therefore necessary to prevent the chronic side effects. For further information, call 1-800-789-PENN.

Ed asks: I am epileptic. Is 6200mg a day considered heavy dose to an average 190lb bodyweight?

Dr. Susan T. Herman responds: It depends which medication you are taking. Some of the seizure medications have small milligram doses, in the range of 30 to 100 mg, while others can go up to doses as high as thousands of milligrams per day. Most of the medications are used in doses less than 6200 mg per day for most patients. If you aren't having any side effects and your seizures are well-controlled, however, this could be an appropriate dose for you, even if it's on the high side of the dose range.

Paul asks: I had a check cashiers manager job for 14 years and had to give it up because I started freezing up. While I was frozen up, I had a speech impediment for a couple of minutes. I am taking Zonegran 100mg (3 times/morning and 3 times/evening). I am also taking Lamictal 100 mg (1 tab, twice a day). I was taking 150mg Lamictal but it was too strong. Would you say these are good for seizures? The show was very good and now I know more about seizures.

Dr. Susan T. Herman responds: Thanks for your feedback about the show. We are glad that it helped you to learn more about seizures. Both Zonegran and Lamictal are excellent new seizure medications: they are very effective and have few side effects. The real test, however, is whether or not your seizures are fully controlled. If you're not having any seizures, and you're not having any side effects, then this is the right medication combination for you.

Crystal asks: I'm taking Lamictal for epilepsy since I have been taking it, it is making me very tired and I find it very hard to wake up early in the morning. Is there something else I can take to help with this side effect?

Dr. Susan T. Herman responds: Some of the common side effects for antiepileptic medications are sleepiness and difficulty with concentration or memory. Lamictal is less likely to cause these side effects than some of the other seizure medications, but tiredness can be a problem even with Lamictal. Some things that can be helpful are to take a higher dose of the medication before you go to bed, rather than in the morning, which can reduce sleepiness during the day. If your seizures are well-controlled, then the dose can possibly be reduced. Finally, if this doesn't help with the sleepiness, you may need a change in your seizure medications. In general, I don't like to treat side effects of one medication with another medication, as the second medication may cause side effects too. I encourage you to discuss this with your neurologist.

Carolyn Larro asks: My husband, Tony Larro, was operated on 7 years ago and thanks to your staff has been seizure free. I would like to express my appreciation for how our lives have changed and not having to live in fear 24 hours a day. In fact, his name was given as a potential participant for this session of Vital Signs (but Mr. Mendoza never returned the call to set up an appointment. My question though is this: in viewing Vital Signs, we both noticed the PET Test was not mentioned as part of the pre-testing along with the WADA Test. When he was a patient, he was asked to undergo an additional MRI with the hope that in the future it would replace the PET Test because of the danger. Has it been discontinued and replaced?

Dr. Susan T. Herman responds: Thanks for your comments about the show. We had such a good response to our requests for seizure free patients to participate in the show that we could not include them all. Dr. French recommended Tony since he had done so well. In answer to your question, the PET scan is still commonly done for epilepsy surgery evaluations, but is not necessary in all cases. We tend to do a PET scan only when the MRI doesn't give us the necessary information. With the improvements in MRI technology, most patients don't need to be exposed to the additional radiation from a PET scan.

Jocelyne asks: First I just wanted to mention that i watched the show, and it was great. It gave a lot of information that is helpful to me. I'm 23 years old, and I have had epilepsy my whole life. I did not notice it until I was 16 years old, when I had a grand mal seizure. The following year I had another grand mal seizure. And ever since then I have partial seizures and episodes. I have been on many different types of medications. I am currently taking carbatrol and keppra. The medicine has helped but im still experiencing siezures and episodes.I also space out, get confused blackout etc... I was seeing a nerologist in my area, and that didnt work out . I have been going to Penn for couple years now. Penn is great. I was watching the show and it was facinating. I was wondering how much is the total cost? and I was wondering if I would qualify for having surgery for epilepsy? and if I don't qualify for the surgery I would like to know information about tests I can get done {ex. mapping, WADA.} that will help me .

Dr. Susan T. Herman responds: I'm glad that the show helped you to learn more about seizures and epilepsy. Certainly, if your seizures are not fully controlled with medications, you could be a candidate for epilepsy surgery. If you're interested in surgery, you could start the evaluation process to determine where your seizures begin and what the risks and benefits of the surgery would be. The total cost of epilepsy surgery is variable, but ranges between 20 and $50,000. All of the testing and the surgery itself is usually covered by insurance. If you are seeing someone in the epilepsy group at Penn, discuss your interest in epilepsy surgery with them. If not, you can request of referral to an epilepsy specialist by calling 1-800-789-PENN.

Joanne asks: I have had seizures for 25 years now. They have been both aura and grand mal. The doctors say there is scar tissue on the left temporal lobe. I am on medications but still have these seizures. My partial seizures occur it seems when I am tired, stressed or before my periods. Could this scar tissue be removed to end these seizures? Also my 9 year old daughter has now had a grand mal seizure. Is there a genetic connection? Thanks

Dr. Susan T. Herman responds: It's difficult to give you a definite answer without knowing all of the details of your history. However, patients who have abnormalities on their MRIs are often very good candidates for epilepsy surgery. If your seizures continue despite medications, it is reasonable to see if you are a candidate for surgery. The evaluation is non-invasive, and will help to determine your likelihood of being seizure free after surgery as well as the potential risks of surgery. You can then make an informed decision about whether this treatment option is for you. For more information, call 1-800-789-PENN. In terms of genetic risks, there is an increased risk of seizures in the immediate family members of people with epilepsy. This is usually in the range of 5-10%, compared to 1-2% in the general population. Most family members of people with epilepsy don't have seizures. We are currently doing studies at Penn to determine which kinds of epilepsy can be inherited, and you might want to learn more about these studies as well.

April Esquilin asks: Hello, I am a 27 year old female and I have complex partial seizures which sometimes lead to grandmal and also generalized tonic seizures I take 1000mg of depakote and 600mg of dilation daily if i miss one dose i will have a seizure I first started having them at 12 then stop untill 14 then at 24 they came back harder than ever do you think i would be able to get this surgery? what are the requirements? I am on ssd to they take it?

Dr. Susan T. Herman responds: You could be a candidate for epilepsy surgery, since your seizures have not responded to high doses of antiepileptic medications. Epilepsy surgery is used only for patients whose seizures began in one part of the brain. Complex partial seizures and generalized tonic-clonic seizures are seizure types that can often be helped by epilepsy surgery. In order to determine if a person is a candidate for epilepsy surgery, we perform several tests, including an MRI of the brain, video-EEG monitoring, and possibly several other tests as well. We can then see where the seizures begin in the brain, the likelihood of someone becoming seizure free, and the risks of the surgery. For more information or an appointment, call 1-800-789-PENN. Most types of insurance, including Medicaid and Medicare, will cover epilepsy surgery evaluations and the surgery itself.

Interested asks: Why can't we watch the show online or order a tape yet like we could last month? When will these services be avalable for the Epilepsy episode?

Response: Interested, the show is now available online at our Penn Vital Signs website.

Ann asks: Our son is 5 months old and has had seizures since about 10 days old. He has been tried on 5 meds with no success. Now we may try Sabril. Do you have any info on this drug? He does have an area of what appears to be cortical dysplasia in the Lt temp lobe. Zipcode: NJ

Dr. Susan T. Herman responds: Sabril is a medication that is approved in Europe for the treatment of seizures. It underwent trials in the United States and was very effective, but had a potentially serious side effect of decrease in vision. Therefore, the medication is unlikely to ever be approved in the United States. It is still available in Europe and in Canada. This medication is very effective for many kinds of seizures, and particularly for seizures in infants who have cortical dysplasia or tuberous sclerosis. It is therefore still used by some epilepsy specialists, and the American Epilepsy Society and Child Neurology Society are working to get special approval for use of the medication in children. Vision screening is performed for anyone who is exposed to Sabril. For more information, call 1-800-789-PENN.

Question: Why when I had the 24 hour eeg did it show that I had a seizure but when I went for the video eeg it did not show nothing when you have the video eeg will it show anything if you did not have a seizure?

Dr. Susan T. Herman responds: In order for us to get good information from video-EEG, we need to record a person's typical seizure. For this reason, we often decrease patients' medications while they are in the epilepsy monitoring unit to make it more likely that they will have a seizure. If a seizure is not recorded, the EEG will not give us very useful information.

Question: How many medications are there now for treating seizures? is there any way to speed up the process in finding the right one, or is it just trial and error?

Dr. Susan T. Herman responds: There are now more than 14 medications available for the treatment of seizures. Most patients will respond fairly well to the first medication used, but sometimes we need to go through several medication trials in order to find the exact right dose and medication. Unfortunately, there is no good way to predict which medication will be best for a particular patient, or which side effects may occur. Trial and error is a frustrating process, for both the patients and the neurologists.