Women's Health Chat

Hello and welcome to our Women's Health event! Joining us are Patricia Osborne Shafer, RN, MN, and Georgia D. Montouris, M.D. I was wondering if we could begin with the two of you telling us a bit about yourselves and your respective backgrounds.

Patricia Shafer, RN, MN: Hi, my name is Patty Osborne Shafer. I am an Epilepsy Nurse Specialist at Beth Israel Deaconess Medical Center in Boston and am Chair of the Epilepsy Foundation's Professional Advisory Board. I also have lived with epilepsy for many years so I know about epilepsy from a different perspective. I have been involved with the Foundation's Women and Epilepsy Initiative nationally and in my home state of Massachusetts, hoping to get more information to women with epilepsy, their loved ones and those who care for them. I hope that you find this chat helpful. We are very excited to be here with you and look forward to your questions and concerns.

Georgia Montouris, MD: Good evening, This is Dr. Montouris, from St. Louis. I am a epileptologist (neurologist specializing in epilepsy). My area of particular interest is that of women's issues in epilepsy, especially pregnancy. I am currently participating in 2 trials-one is an observational study looking at the risk of neurocognitive effects in children born to mothers taking Tegretol, dilantin, Depakote or Lamictal during pregnancy; a menopausal study of HRT. Also I am collecting information on Neurontin exposure during pregnancy.

Thanks, and welcome again to you both. Let's get right to the questions: "I've been taking Tegretol for the past 18 years. Have never experienced side-effects. Over the past 2 years however, I need to sleep more and more during the day and now cannot go without a nap. This tiredness is not physical. My energy level is so low I worry what I will be like when I'm 60 years old My memory problems have increased and mood swings are more noticeable. I am now 46 years old. Do these changes mean it is time to change to a different medication, if so what options might I want to discuss with my doctor?"

Shafer: Fatigue and lack of energy are common symptoms and often hard to sort out. They could be caused by after effects of the seizures, medicine side effects, hormonal changes you may be going through, or other physical problems. You should talk to your general medical doctor as well as your neurologist to sort out these issues. Sometimes, a lack of energy, memory problems and mood swings can be caused by mood problems such as depression -- if this is the case, seeing a counselor can be very beneficial, and at times a doctor who can prescribe medications to help your mood is needed. There are many possibilities, so make sure you talk to you doctor about the symptoms. Also make sure you ask about all the positive as well as negative effects of the medicines you are taking - some will help lessen fatigue, memory problems or mood, while others may cause or worsen them.

"How can my daughter feel safe in taking care of her 16 month old daughter, she is very frightened she might have a seizure while bathing her, holding her, etc."

Shafer: Many women are concerned about caring for their babies, afraid that an accident may happen. There are many practical things you can do to make life safer. Try giving the baby a bath when someone else is around or make bathing time a family time! Use only small amounts of water in the bath as well. If a woman is nervous about carrying her baby, she can use a stroller - the umbrella strollers are particularly good to use around the house if the mother is alone. Try to keep things on one floor when she is alone and use gates to prevent babies from crawling into places they shouldn't. In essence, a mother with epilepsy needs to take all the safety precautions that a mother without epilepsy should do, but look at it a bit more carefully and use help if she isn't feeling safe alone. The most important thing is to feel okay about taking care of your baby and talk to people about any concerns. Look at the EF website under Safety and the Fact Sheets on Parenting for Women with Epilepsy For other safety tips!

"What are the long term side effects of Dilantin. My daughter has been on the med since 10 and is now 23.

Montouris: Overall, Dilantin is a safe drug. However, osteoporosis has been associated with what are called enzyme inducing drugs -- of which Dilantin is one. Therefore, calcium supplementation, exercise and diet are important. Other issues relate to use of oral contraceptives with enzyme inducing medications, so choice of oral contraceptives must include those with >50ug/ml. Also, to prevent as best possible, birth defects anyone on anti-epileptic medications should take folic acid (vitamin) to help prevent defects. Remember, Dilantin has certainly passed the test of time -- it first came out in 1937!

"What's your opinion on direct self study as a patient through medical records?'

Shafer: I am not quite sure what you mean about "direct self study through medical records." I do think that people should have access to view their records -- after all, it is your health and you are the one seeking the help. That said, there is a lot of information in medical records that is confusing, so you may want to review it with your doctor, nurse or someone who can help interpret what it means for you. And if you don't agree with something, talk to your doctor and make sure the record reflects what is really going on. The best avenue is to ask your doctors to send you copies of all notes - that way everyone knows what is going on and can work more effectively together as a team.

Several people asked about the effects of antidepressants on epilepsy and whether they conflict with AED's. Can you talk a bit about that?

Montouris: Mood disorders are common in patients with epilepsy -- these are often referred to as dysthymic disorders. There can be many causes. For example, the part of the brain affected by the seizure discharge; medications can cause some mood changes, quality of life issues. Consequently, the use of antidepressant medications are common in patients with epilepsy. Most are tolerated well and do not interfere with seizure activity, but some, such as Wellbutrin, are known to perhaps lower seizure threshold. Also, some affect blood levels -- of Dilantin for example in the case of Prozac. Some of the tricyclic medications, a type of antidepressant, can lower seizure threshold when used at high doses. Overall, most people tolerate the antidepressants very well, especially the class of SSRIs; even antipsychotic medications like Geodon or Risperidal or even Zyprexa.

"If seizures were associated with the menstrual cycle before menopause and become more frequent after menopause, might there be an advantage to using combined estrogen/progestin hormone replacement therapy (eg PremPro)or possibly progestin alone?"

Shafer: Many women report that their seizures tend to occur more frequently at certain time of their menstrual cycle. They may also change at the time of menopause but this period of life hasn't been well studied. It does appear that if women have seizures that are sensitive to hormone changes prior to menopause, their seizures may actually get better AFTER they go through the perimenopausal period. While they are "going through the change," the seizures may be more variable. Some women do seem to respond to use of hormone therapy in addition to their seizure medicine. The hormone treatment that seems to work best (as far as we know now) is a combination of progesterone and estrogen, particularly for women who have partial seizures affecting the temporal lobe or limbic areas of the brain. Luckily there are studies going on to learn what type of hormone therapy works best in women with epilepsy going thru menopause.

"I am currently on Tegretol, 800 mg a day and am also on Birth Control. I my gyn has tried about 6 different pills and I still am getting my period every two weeks since being on Tegretol. Is there a birth control that you would recommend? How is the shot?"

Montouris: As Tegretol is considered an enzyme inducing medication, the choice of oral contraceptive must contain a min. of 50ug of estrogen to assure efficacy. Breakthrough bleeding is often a sign of ineffective oral contraceptive. In addition, women with epilepsy have a higher incidence of irregular menstrual cycles -- therefore, a consultation with a gynecologist is recommended.

"Are there specific meds that are prescribed to deal with epilepsy during menses?"

Shafer: Women who have seizures during menses can try a number of things. First, they should work with their doctor to find the best antiepileptic medication as there have been many new medications introduced in recent years. If this doesn't work, a hormonal evaluation would be helpful to sort out if there is an endocrine problem and to determine what type of therapy would work best. Most often, doctors who use hormonal therapy try progesterone for a few weeks each month, usually for 10-14 days before the menstrual period starts. Some doctors think that natural progesterone works better than other types, but we don't have studies comparing the different types yet. In some cases, it may be indicated to try and suppress or stop a woman's cycle by giving progesterone continuously, but this should be done carefully so you can weigh the benefits against risks or side effects of constant hormone therapy.

We fair number of questions about how AED's affect fertility. Can you talk a bit about that?

Montouris: Infertility is common in women with epilepsy -- fertility rates are decreased by about 1/3 in comparison to the general population. Its not just the role of the medications- actually there are many possibilities as to why there are hormonal abnormalities that can affect fertility. The seizure discharges may be a factor. Also, polycycstic ovaries are common in women with epilepsy, which can also affect fertility. If a women is experiencing difficulty in becoming pregnant, she should seek a consultation with a fertility expert.

"I know that epileptic women can have children, however, is it only safe for women with a certain type of epilepsy or all women in general? I know when it is time for my period, I am more prone to having a seizure. If my hormones are crazy around my period, I am afraid to think of what it will be like if I choose to have children. Lastly, what consequences does a seizure have on a fetus?"

Shafer: Over 90 percent of women with epilepsy who get pregnant, have healthy children. The risks of birth defects in the child do not seem to be related to a specific type of seizure but rather to the medications. However, we still don't have all the answers. If you are thinking about having a child, consider enrolling in the AED Pregnancy Registry (1-800-233-2334) to help us learn more about the effects of medications on babies. And, make sure that you talk to your neurologist before you get pregnant so you can learn about pregnancy and caring for yourself, and make sure you are on the best medication regimen for you and your child. In regards to seizures during pregnancy, some women actually have less seizures during pregnancy, while only about 1/4 to 1/3 of women have increased seizures during pregnancy. We know that seizures during pregnancy, particularly generalized tonic-clonic or "grand mal" seizures can affect the health of the baby, thus it is very important not to stop medications suddenly during pregnancy. Before, during and after the pregnancy, it's important for the mother to work closely with her health care providers - to get on the best medication that will control seizures with the least amount of side effects for the child. You will likely need to see the doctors and nurses more frequently during pregnancy to make sure that the medicine levels are staying stable and to help adjust them as needed.

"My daughter age 46 suffers from multiple types of seizure, she is learning delayed, also, seizures are more frequent although she is on Keppra, Zonegran and Depakote, weight gain is great in the last year. Is this med related? Or hormonal(menopause)?"

Montouris: Weight gain can certainly be a result of medication -- Depakote is known in about 40 percent of individuals to cause weight gain. Other agents such as Tegretol and Neurontin can too. Some drugs are known to cause weight loss -- Topamax, Zonegran, and Felbatol are good examples. Besides the aesthetic concerns of weight gain, health issues are also to be considered -- weight gain can cause hypertension, type II diabetes, cardiac disease and may be a part of the polycycstic ovarian syndrome. The issue is, if significant increases in weight occur, consideration to changing the medication should be undertaken.

"I am interested in finding information about treating seizures without meds or a minimum of meds. Perhaps, homeopathic, biofeedback, chiropractors, massage therapy? I would never change anything without discussing with my daughter's neurologist, but I am just curious to see what else may be out there."

Shafer: Many people have questions about the use of alternative therapies for epilepsy. Unfortunately, we don't have a lot of solid information about how well some of these work or even their side effects. There have been a lot of conflicting studies on the use of biofeedback and you have to be careful with some herbal therapies or nutrients as some could actually aggravate seizures. Talk to your doctor about your ideas and if he or she is not comfortable with the topic, ask if he knows someone who can help. You can also call your local Epilepsy Foundation affiliate for recommendations of doctors in your area or more information.

"How effective is the PET scan?"

Montouris: As for PET scan, some centers use this more than others. In some cases, the PET scan can be helpful in localizing a seizure focus if not clearly defined by in patient monitoring and MRI. My experience has been very limited with PET; other centers I am told use it frequently. You may want to discuss this with your neurologist and see how extensive the level of experience is in your area.

"I have long felt helpless in trying to help my daughter cope with this disorder, any ideas on how to help her? We live 900 miles apart.

Shafer: Feeling helpless is a very common reaction, especially when your loved one lives far away. But even if your daughter was right here, you couldn't fix it for her. You can, however, offer her support in many different ways. Take the time to learn as much as you can about epilepsy and how it affects families. Be a listening ear and make sure she knows where to get information too. And above all, make sure that she, and you, know that it is okay to ask for help. It is hard to deal with this all alone -- support from others in similar situations can be very helpful. I hope you have checked out the eCommunities on the website for families/parents... or call your local Epilepsy Foundation affiliate and see if they have a Parent Support Network. Keep in touch!

"I'm 17 and have had epilepsy since I was 15 my boyfriend's senior prom is coming up in 2 weeks and there is going to be a party and drinking if I was to drink with my meds. how fast could I go into seizure from drinking?"

Montouris: Alcoholic beverages and epilepsy are not a good mix. I received a phone call from a patient recently who, although warned about alcohol and seizures, had just graduated, drank beer to celebrate, had a seizure (wasn't injured fortunately). But now... no driving for 6 months! Alcohol can lower seizure threshold, and in the case of JME(Juvenile Myoclonic Epilepsy) it is almost a sure thing to cause a seizure. Routinely, the advice is not to drink -- it said that occassional drink is usually o.k. -- however, I worry about events like proms, where sleep deprivation is a biggy along with alcohol. Also some meds don't mix well at all, like phenobarbitol. It also appears that the effects of alcohol are felt very quickly. My rule of thumb is, occasional drink is o.k but if you have to drink to have a good time, I'd assess who you're with and where you're at.

"I have simple and complex partial seizures and have tried Carbitrol, dilantin and depakote, with Dilantin being the most effective. I'm considering switching to Lamictal before I get pregnant. Any evidence that one has any less incidence of birth defects? Also, any resource suggestions for someone considering pregnancy but really afraid?"

Shafer: It is good that you are thinking ahead about what medicines may work best for you. The most important thing is to find the drug that controls your seizures best, and has minimal risks to the baby. We don't know enough about some of the newer drugs - to say which one is best or even if there is a "best" drug. People must also be aware that the risks to the baby from birth defects appear to be greatest when the woman is on multiple medications and/or on high dosages of medicine, regardless of which drugs. Thus, if you want to change medications, leave enough time to work through ALL the changes. It isn't always very easy or quick but in the end, it may be worth the time. Look on the Foundation's website for the fact sheets for Women with Epilepsy -- you will find more about managing pregnancy and the effects of medications. And remember, if you do decide to get pregnant, check in with the AED Pregnancy Registry!

Well we are almost out of time. I just wanted to thank you all for coming out this evening... and a special thanks to our guests tonight, Patricia Osborne Shafer, RN, MN, and Georgia D. Montouris, M.D. Please take a moment to visit our forums at www.epilepsyfoundation.org/forums You may be surprised to find a lot of people in there going through the same things as yourself.

Montouris: Many interesting and important questions were posed. I urge you, the patient, the family to discuss your concerns with your physician. I often hear that patients feel they cannot do this, but I urge you to do so. If your physician does't have the answers, ask who might. The Epilepsy Foundation is very helpful, local chapters are there too. Patients should not feel shy about discussing concerns, fears they may feel.

Shafer: I hope that you found this information interesting. I know I did, just by reading your questions! If you are looking for resources in your area and don't have a local Epilepsy Foundation, see if there is a hospital that specializes in epilepsy and ask to see a nurse or social worker. They could help you get more questions answered and get you connected with more resources in your area. Thank you again for joining us and I look forward to seeing (typing!) with you again!!

Posted: May 22, 2002