Chat Event Transcript: Women and Epilepsy with Dr. Patricia K. Crumrine

This event took place on May 21, 2003

Posted: June 17, 2003

More than one million women and girls in the United States are living with seizure disorders. They face many unique challenges, from changes during the monthly cycle which may trigger seizures to concerns regarding pregnancy.

Patricia K. Crumrine, M.D., is professor of pediatrics at the University of Pittsburgh and director of the pediatric epilepsy program at Children's Hospital of Pittsburgh. She is a member of the Epilepsy Foundation's national professional advisory board and serves on the Executive and Quality of Life committees. Dr. Crumrine also serves on the board of directors and as chair of the professional advisory board of the Epilepsy Foundation of Western Pennsylvania.

Admin: Hello and welcome to tonight's event. Our guest tonight, Patricia K. Crumrine, M.D., is a professor of pediatrics at the University of Pittsburgh and director of the pediatric epilepsy program at Children's Hospital of Pittsburgh. She is a member of the Epilepsy Foundation's professional advisory board and serves on the executive and quality of life committees. Dr. Crumrine also serves on the board of directors and as chair of the professional advisory board of the Epilepsy Foundation of Western Pennsylvania. This evening we'll be answering a mix of live questions, as well as questions submitted in advance by the audience.

Admin: Thanks for joining us tonight ... Do you have any opening thoughts?

Dr. Crumrine: Welcome to tonight's chat on women's issues in epilepsy. We have some early questions that have been submitted and I will try to answer some of those to start.

Paula: I would like to know what the statistics are for heritability of epilepsy. My neurologist says that my epilepsy is genetic but yet he says my child has a small chance of developing the disorder.
Dr. Crumrine: There is a slightly higher incidence of epilepsy in family members with epilepsy when compared to the general population as a whole .There are some newer pieces of information that we are learning about the genetics of epilepsy.

We know that certain epilepsies such as absence and some of the generalized epilepsies run in families. There have been some genes identified for some specific seizure syndromes such as seizures that occur in the newborn.

Janet: Many of my friends are on the Atkins Diet. My meds, Carbatrol, have caused me to gain a substantial amount of weight. Is the Atkins Diet ok for me to try?
Dr. Crumrine: If you are going to consider such a diet it would be wise to discuss this with both your primary care physician and your neurologist. Some diets with restrictions such as the Atkins diet can change the metabolism of our body and could have an impact on the metabolism of seizure medications. The diet is not contraindicated.

kal_ef: I am dating a woman with epilepsy. She was anxious about telling me, and we talked about it. How can the Epilepsy Foundation help us as a couple?
Dr. Crumrine: The Epilepsy Foundation has a wonderful program for Women with Epilepsy (WEI) and also has support groups for adults and families with epilepsy. The Foundation also has an extensive source of printed materials for patients, families to read.

Linda: I'm 52 and experiencing increased seizures but I had a hysterectomy 17 years ago, can this still be hormonal?
Dr. Crumrine: This should not be specifically related to hormones, unless you are taking hormonal replacement of some kind.

Dtna: What info do you have on pregnancy and simple partial seizures?
Dr. Crumrine: The information regarding seizures and pregnancy pertains both to generalized and partial seizures. It is important for a woman who has become pregnant and who has epilepsy and is taking antiepileptic medication to meet with both her neurologist and her obstetrician. The two physicians should work together during her pregnancy to seizures as well-controlled as possible at the lowest possible antiepileptic drug doses.

Angie: I was diagnosed with catamenial seizures at 33 years old. I am now 50 years old and menopausal. My experience has been that the majority of physicians do not know much about seizures in women and they don't care to learn. Will this ever change? Thank You!
Dr. Crumrine: The EFA has been putting forth a major effort to educate physicians and healthcare workers about the issues related to women with epilepsy. You are right, in that, until now many physicians were not aware of some of the issues. I can assure you that this is changing.

kal_ef: Can you tell me some of the common wrong things that are done in performing first aid for seizures? Is there a different first aid procedure for women than for men?
Dr. Crumrine: Many times the person who first responds to someone having a seizure may not recognize the event as a seizure unless it is a convulsive seizure. Therefore, they may not always do the correct thing. That is why it is very important for people with seizures to have some form of information on them to identify the fact that they have seizures and possibly what medicine they take. There is no difference in the approach to a man or a woman. In both cases, the responding person should be sensitive to the person, but helpful to them. Some things that are still done for convulsive seizures but are INCORRECT are: to put something in the mouth, not to put the person out of harm's way and not to loosen tight clothing.

Dita: I have a mild form of epilepsy and currently take no prescribed medication (personal choice). If I take medication, can it affect my ability to conceive?
Dr. Crumrine: Most women who have epilepsy and take medications are able to conceive. We know that there is a slightly higher incidence of fertility problems among men and women with epilepsy, even without medication. Some medications such as valproate do have problems with menstrual irregularities.

Kathieleigh: Why don't EEG's always show seizure activity?
Dr. Crumrine: EEG's represent a small sample of a 24-hour day. When a typical EEG is performed, it is for 30 to 45 minutes. We can increase the yield on EEG's when they are repeated if the first or second is normal or negative or when we do a prolonged EEG, over 24 hours.

Sandra: I have tonic clonic grand mal seizures and also have black outs. I've had this since I was 15 years old and it's getting worse. Can you please help me? I've had doctors help me but they don't know what's causing this.
Dr. Crumrine: We are not always able to determine the exact cause for seizures. We can do so about 70 percent of the time. As newer genetic and newer imaging techniques become available, this will increase the ability to determine causes. If your seizures are getting worse and not responding to medications it is important to discuss this with your treating doctor to see what other treatment options might be possible. These could include other antiepileptic drugs, surgery or vagal nerve stimulation.

Mitch: Thank you for taking the time with us on this chat, and for answering our questions. I was curious, though, in your opinion, why do you think epilepsy still carries the stigma that it does?
Dr. Crumrine: Certain ideas are difficult to change. I believe that the Epilepsy Foundation is making good progress in dispelling some of these stigmas. The more people are willing to talk about their epilepsy and to educate others, the less the stigma over time.

Janet: Since Feb 2002 I have a seizure every second month at the start of the monthly cycle. Under the care of a physician, prescription drugs appear to have delayed the actual onset of the seizure by about 40 minutes. Instead of increasing drug dosage I have started taking the progesterone pill - Nor QD in addition to the drugs. What is your take on this?
Dr. Crumrine: We have learned a lot about the presence of seizures during the menstrual cycle and now know that estrogen can serve to activate seizures and that the progesterone may be helpful in controlling seizures. For women who have seizures during the early part of their menstrual cycle, providing progesterone may be very helpful in decreasing seizures.

Mgm: My daughter age 14 has absence and myoclonic seizures. She hasn't had a seizure in 11 years, but she has not been through puberty. What are the chances her seizures will return?
Dr. Crumrine: If your daughter does not have any other existing neurological problems and does not have seizure discharges on a current EEG there is a very good chance that she will go through puberty without difficulty. The majority of women with epilepsy will go though puberty without increased seizures. It is a small percentage of women who have increased seizures or seizures specifically related to their menstrual cycles.

Claire: I began having seizure-like activity after the birth of my only son. I remain conscious, but have severe motor activity and my speech is often impaired. The activity lasts from seconds to 25 minutes. I have yet to be formally diagnosed. Is there a trend or condition where women begin having seizures after child birth? I did have an epidural.
Dr. Crumrine: Seizures can occur at any age, from the newly born to the elderly. There is not a particular association with seizure onsetrelated to child-bearing. If the labor or delivery were difficult and associated with high blood pressure, excessive bleeding or other problems then there might be a greater chance that a seizure might occur. Women who have high blood pressure secondary to toxemia of pregnancy may have seizures.

Pacemaker: I was wondering if the doctor has heard of broken arms from seizures. I didn't fall I woke up from sound sleep with two broken arms.
Dr. Crumrine: This is not a common or recognized problem from seizures. One possibility might be that you struck the wall or bed with your arms during the seizure if it were convulsive.

Jamal: Is there a definite way to differentiate between true seizures and pseudoseizures ie. anxiety, somatisation? and could they co-exist? Is relation to period an indication of either?
Dr. Crumrine: The best way to differentiate between the pseudoseizure (nonepileptic seizure) and epileptic seizure is to record the eventwith video and EEG simultaneously. It can be very difficult at times to see the event and make the distinction between them.

Jane: Is it dangerous for a child with epilepsy to play video games?
Dr. Crumrine: Most children with epilepsy are not sensitive to changes in light frequencies or patterns. There is a small subset of people with epilepsy who have photosensitive epilepsy. It is this group of people who should avoid certain video games or situations with strobe lights. If children do not have this type of epilepsy, I would let them play video games, but monitor the time spent.

Jordan: Can you be an organ donor if you have epilepsy? I have taken medicine for nine years and they have all been different kinds and I thought that it might have slightly affected my organs!
Dr. Crumrine: If organs are functioning normally and there is no indication of damage, a person could be considered for organ transplantation.

Indy: Could the onset of grand mals be due to scar tissue?
Dr. Crumrine: If the seizures are generalized tonic-clonic seizures (grand mal) they are more likely to be of genetic origin than from scar tissue. Many partial seizures become secondarily generalized; if this is the case there is more likely to be a focus for the seizure. The focus can be from a number of different causes and prior head injury with scarring could be one of the causes.

Speechtx: Do you have any information about new onset seizures related to perimenopause or possibly celiac disease?
Dr. Crumrine: Seizures can occur in the perimenopause period for the first time. At this age, causes can be related to problems with blood vessels, high blood pressure and other aging problems. With diseases like celiac disease there are some immune related problems that can occur in the body and these may play a role, as a cause for seizures. We see seizures in diseases like Crohn's disease and celiac disease.

kal_ef: Dr. Crumrine, I see you are the director of pediatric epilepsy at Children's Hospital. What advice would you give on how to explain seizures to a sibling of a child with epilepsy?
Dr. Crumrine: The explanation has to be related to the age of the sibling. For the younger children I would talk about simple electricity; one can use the telephone as an example and talk about how the talking gets sent along wires to another phone or person. Another example, for a slightly older child is to use the example of a small spark that builds into a big fire and spreads. The Epilepsy Foundation has some very good books and pamphlets that discuss seizures for young children and teenagers. These are available on the website.

Marty: Is there any connection between epilepsy and schizophrenia and also perhaps alzheimers?
Dr. Crumrine: In the elderly population, there are adults with dementia who may also have epilepsy. These people may have their dementia from narrowing of the blood vessels in their brain as they get older. There is a slightly higher incidence of epilepsy in those with Alzheimer's Disease as compared to the general population. Not a particular association with schizophrenia.

Admin: Well, folks ... I'm afraid that we've just about reached the end of our time tonight. Do you have any closing thoughts, Dr. Crumrine?
Dr. Crumrine: I would like to thank all of the participants. You had some very good and thought-provoking questions. I hope that I have been able to provide some answers for you. Good resources are found on the Epilepsy Foundation website, on the Women and Epilepsy Initiative page. Thank you all for joining us this evening.

Admin: Thank you all for joining us tonight. Our guest tonight, Patricia K. Crumrine, MD, is a professor of pediatrics at the University of Pittsburgh and director of the pediatric epilepsy program at Children's Hospital of Pittsburgh. She is a member of the Epilepsy Foundation's national professional advisory board and serves on the Executive and Quality of Life committees. Dr. Crumrine also serves on the board of directors and as chair of the professional advisory board of the Epilepsy Foundation of Western Pennsylvania. A full transcript of this event will be posted shortly. Obviously, we didn't have the chance to get to every single question -- but we're going to forward the remaining questions to the Epilepsy Foundation's Information and Referral department to make sure you get the info you need.