Female Hormones

Do sex hormones in women affect seizure control?


Yes, estrogen, progosterone, and testorone, the main sex hormones in females do affect seizure control.




Why do I have seizures more often around the time of my menstural period?


This is a condition called “catamenial epilepsy,” and describes a tendency for increased seizures related to the menstrual cycle. Your seizures may get worse or better during different times of your hormonal cycle. For example, women with absence seizures see more seizures when it is day16-28 of their menstrual cycle, and their seizures seem to decrease during their period. However, women with partial seizures have fewer seizures when it is day 16-28 of their menstrual cycle. They have more seizures during their period and right before they ovulate. The causes of catamenial epilepsy are not understood very well. The balance between the two female sex hormones, estrogen and progesterone, may be disturbed, or you may not be producing enough progesterone during the second half of your menstrual cycle. It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.




Why do my hormones affect my seizures?


Yes, although we do not understand it very well. We know that the female hormones, estrogen and progesterone, act on certain brain cells, including those in the temporal lobe, a part of the brain where partial seizures often begin. Estrogen excites these brain cells and can make seizures more likely to happen. In contrast, natural progesterone can inhibit or prevent seizures in some women.





Are all seizures caused by hormone changes?


Hormones generally do not cause seizures but can influence their occurrence. Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations. For example, puberty is a time when hormones are stimulating body changes. It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time. Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods.





Menopause

What does the change of life have to do with my seizure disorder?


Menopause is the time in a woman’s life when her ovaries stop working, her menstrual periods stop and the level of sex hormones in her body decreases. We know that because hormones have an effect on brain function, seizure patterns may change in some women as they go through menopause, just as they may at other times of hormonal change. You may contact the Epilepsy Foundation for the information sheet like this one on Hormones and Epilepsy.




Can my epilepsy cause my menopause to occur earlier?


Yes, the research does suggest that in women with higher seizure rates or catamenial seizures, epilepsy may occur even a decade earlier.




How are the decreasing levels of progesterone and estrogen affecting my menopause?


It is unclear because both progesterone and estrogen are decreasing. At this time, researchers have performed only a few studies on this topic. However, for more clarity on the subject, researchers will have to conduct additional tests. In the meantime, women should be aware of their seizures during this time.




Is hormone replacement therapy a good idea?


Whether hormone replacement therapy is a good idea for women with epilepsy is still unclear. Hormone replacement therapy treats most of the common side effects of menopause, like hot flashes. In addition, it may stop bone softening which is so essential for women who have epilepsy. However, some studies have suggested that it might put one at more risk for a stroke or breast cancer. Also, whether it increases or decreases seizures is still unclear. Thus, every woman has to weigh the negatives and positives as they talk to their doctor about whether hormone replacement therapy is the right fit for them.




Will my seizure medication change as I get older?


That depends on a lot of factors. If your seizures become more challenging to control, your physician may want to try other medications. As our bodies age, our metabolism changes, and medication doses may have to be altered. Some seizure medications seem related to the thinning of bones. Check with your doctor to see if this could be a problem for you.




I’m middle-aged and my seizures have gotten more frequent recently. Do I have to accept that as part of menopause?


It’s important to remember that menopause is usually a process, not a sudden event. A change in your seizure pattern deserves an evaluation by your physician. There can be many causes for increased seizures and not all are related to hormones.




I'm 50 years old and my periods are less frequent. I'm having hot flashes too. Is this a different kind of seizure?


Probably not, although some women feel flushed as part of a seizure. It is common for a woman of your age to be going through menopause and having “hot flashes” as an uncomfortable side effect of menopause. Talk to your physician and your neurologist about this and let them help you sort it out.




My mother has thin bones and I've been told I should take estrogen when I get to menopause. Can I do that if I have seizures?


The decision to take estrogen is an individual one, based on a lot of factors you should talk over with your physician. Taking supplemental hormones at the time of menopause is called hormone replacement therapy (HRT). Estrogen may reduce the risk of heart disease in some women, and offers protection against osteoporosis (thinning of the bones). However, for some women, it carries an increased risk of uterine cancer or breast cancer. You and your doctor can weigh all the benefits and risks for you, taking into account your health and your family history. If you take supplemental estrogen you will probably take progesterone, too. Taking progesterone may give you some additional protection from seizures, although more research needs to be done in this area. Natural progesterone, rather than synthetic, seems to be more beneficial in controlling seizures in some women.





Female Physical Health

Does epilepsy make me at more risk for other reproductive disorders?


Women with seizures that start in the temporal lobes of the brain seem more likely to have reproductive disorders such as polycystic ovaries, early menopause, and irregular (or no) ovulation, than women in the general population. The temporal lobes are closely connected to, and communicate with, areas of the brain that regulate hormones (hypothalamus and pituitary gland.) Seizures in these areas may alter the normal production of hormones. Certain epilepsy medications seem to interfere with hormone regulation.





Why does epilepsy increase my chance of reproductive issues?


The temporal lobe and the hypothalamus, which regulates hormones, are connected, and disrupting one can disrupt the other.




What steps can I take to lessen the effects of epilepsy and antiepileptic meds on my bone density?


You can take estrogen. This is because estrogen promots bone health. However, if it is not possible to take estrogen, there are additonal ways to protect aganist lower bone density. You can eat a diet high in calcium and ask your doctor about calcium supplements with vitamin D. Get some regular physical exercise and limit alcohol intake. Don’t smoke. These things are a part of a healthy lifestyle in any woman and may reduce the risk of bone disorders after menopause.





Mental Health

How does epilepsy affect my mental health?


It can often cause depression. In one study, researchers found that adults who had epilepsy were twice as likely to report experiencing feelings of depression. The reasons for this startling disparity in numbers is multifaceted, and some of the reasons are listed below: Many of the areas affected by seizures control mood. Research has shown that the severity of depression that a person has directly correlates with the rate of epileptic seizures the person experiences. Epileptic seizures or antiepileptic meds can affect hormone levels, such as estrogen. The day to day challenges of living with epilepsy can be overwhelming. Seizure medication may affect your mood, making it better or worse. People with epilepsy are more prone to depression.




What can I do to improve my mental health?


Support groups – either online or in person – can help people with epilepsy realize they are not alone in the social challenges they face. This is especially true for people with poorly-controlled epilepsy, who may be socially isolated due to driving restrictions and inability to maintain employment. Contact your local Epilepsy Foundation, call the 24/7 Helpline at 1-800-332-1000 (en Español 1-866-748-8008), or use the forums and chat on this website to connect with others. For more help finding support groups you can visit this page. You can also connect to the main Epilepsy Foundation through their different social medias. Stress management has been linked to improved self-esteem and seizure control. People with epilepsy who suffer from low self-esteem and anxiety may benefit by learning and practicing relaxation techniques and mindfulness. Examples of these techniques include paced diaphragmatic breathing, aromatherapy, tai chi, progressive muscle relaxation, and meditation. Regular exercise also provides physical and emotional benefits for people living with epilepsy. Find more information about healthy living with epilepsy from the Epilepsy Foundation Wellness Institute.Seek professional help – If feelings of low self-esteem last for a long time or interfere with daily living, seek help from a trained professional, such as a clinical psychologist or a qualified counselor. Ask your primary care provider or neurologist for a referral.




What additonal ways can I improve my mental health?


There are many different ways you can help support your mental health. Listed below are a few: Exercising often Eating healthy Volunteering Asking for help Practicing changing your thinking strategies Becoming involved in spiritual practices




Where can I get help for my mental health?


There are many different places you can get help for your mental health, such as specialists in mental health, the doctor your family sees, health maintenance organizations, or community mental health centers. For a complete list, visit the linked website.




People say I have mood swings. Can my personality be affected by epilepsy or my medication?


That is a complex question. Mood and personality are affected by many factors. Certain kinds of seizure disorders (those that originate in the temporal lobe of the brain, for instance) appear to affect mood and behavior during an actual seizure episode, and even an aura may change your behavior patterns. But seizures (and auras) are intermittent events and it is not clear how epilepsy affects general personality traits. Some physicians used to refer to the “epileptic personality,” implying that all people with seizures shared certain behavioral characteristics. We now recognize that people with epilepsy have a variety of personality traits, positive and negative, just as people without epilepsy do. The intermittent and often unpredictable occurrence of seizures can make you feel anxious or embarrassed, and cause some people with epilepsy to be reluctant to socialize normally. They may withdraw and feel angry or depressed. You may have extra stresses connected with work, and financial hardships secondary to career choices or the costs associated with your seizure disorder. Any of these factors can make people seem moody. Some of these feelings may be a normal reaction to the initial diagnosis of epilepsy or to the everyday events in your life. If they persist and significantly interfere with your life, talk with your physician or nurse. They may refer you to a professional counselor (social worker, psychologist or psychiatrist) to help you address these issues. In addition, some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations, especially as it relates to their menstrual cycle. Many women also notice mood swings at specific times in their menstrual cycle. It may be helpful to keep a calendar of your menstrual cycle and any mood changes along with your seizure record to share with your doctor or nurse. For more detailed information, see Hormones and Epilepsy. In addition, seizure medications may have side effects that result in mood changes. This seems more frequent with phenobarbital (Luminal) or primidone (Mysoline), but any seizure medication can make some people feel depressed or irritable. If the dose of medication is not well tolerated, resulting in overmedication, a person’s ability to think clearly may be affected. If you think your medication is having unpleasant side effects, it is important to share this information with your nurse or doctor. For additional information, see Special Concerns About Seizure Medications.




Does epilepsy affect my self esteem?


There is no evidence that epilepsy causes low self-esteem. However, some research suggests that people with epilepsy may have difficulty forming relationships with others, possibly due to damage to parts of the brain that are important in social functioning. Experts also cite other possible reasons why people with epilepsy are prone to low self-esteem: -Family over-protection, which prevents individuals from developing independence and self-esteem -Fear and misunderstanding (stigma) that accompanies epilepsy may lead to a negative self-image -General personal dissatisfaction, depression, and anxiety Low self-esteem in men living with epilepsy likely begins during adolescence, a period of heightened self-consciousness that may be made worse by having epilepsy.




What are the effects of low self esteem?


Low self-esteem can result in general dissatisfaction. It can also harm specific aspects of life. For instance, low self-esteem may contribute to sexual problems, such as decreased libido (sexual desire). Low self-esteem may also be partially responsible for under-employment among men living with epilepsy. A survey published in 2000 found -People living with epilepsy had a lower median household income than the general population -Unemployment among people with epilepsy who were able to work was five times higher than the national rate





Male Hormones

Does testosterone affect seizures in men?


There is not as much research done on this aspect, and the link is not as clear. However, testosterone or its estrogen by-product could affect seizures in men.




Does the fact that men’s testosterone decline as they age affect their seizures?


The declining testosterone levels in men do not seem as connected to seizure control as women and their declining estrogen and progesterone. However, testosterone can be an excitatory hormone when it converts to estrogen. Therefore, there may be a link between the declining levels of testosterone and seizures.




What causes this declining testosterone?


As men age, their testosterone declines. However, men with epilepsy have even more drastic drops in testosterone due to the antiepileptic meds they take and the seizures themselves.




How do seizures cause a decline in testosterone?


Seizures may cause changes to their hormones or the neurology of the patient. For example, seizures can change the way hypothalamic and pituitary hormones are released.




How do my meds cause a declining testosterone?


The antiepileptic medicines work directly on the part of the brain that controls sexuality. The medicines may cause secondary effects on a person’s reproductive hormones or change the concentrations of sex hormones in the person’s body.





General

How does having epilepsy affect my bone density?


Epilepsy itself does not affect your bone density. However, many antiepileptic medicines affect bone mass. Therefore, doctors recommend getting a DEXA scan if you have taken antiepileptic medication for at least five years. This scan analyzes your bone density in two places, your hip and lower back, to give you some bone scores, most notably the T score. This score allows you to see the state of your bone density compared to other men or women your age with average bone mass.




What can I do to decrease my risk of osteoporosis?


There are several changes in your life you can make to help keep your bones strong. You can exercise. Doctors recommend weight bearing exercises. These types of exercises have you remain upright while your body struggles aganist gravity. Phsycians recommend you eat a healthy diet, making sure to inlcude calcium and vitamin D. It would be best to not smoke and limit how much alcohol you consume.




Why is it important to find out if hormone changes are involved in my seizures?


For both women and men, identifying hormonal influences on seizure patterns may lead to a better understanding of treatment options for seizure control. Women should keep a calendar of their menstrual cycles and of days they have seizures. It is important to keep track of other factors that may affect the menstrual cycle or seizure patterns, such as missed medication, loss of sleep, unusual fatigue, intense physical training, stress, or an illness. Some women may find it helpful to keep track of the lowest body temperature of the day (taken each morning before getting out of bed, and before eating the first meal of the day). This helps to find out if you are ovulating regularly. Be sure to share these records with your doctor or the nurse who is helping you manage your seizures.




How do I find out if I have hormone-related problems?


If you suspect that hormones play a role in your seizures, talk to your physician or the nurse who helps monitor your seizures. Blood tests of certain hormone levels and of your seizure medication may provide helpful information. Sometimes additional tests, such as a pelvic ultrasound for women, may be recommended to rule out other causes for menstrual irregularities.




I think my seizures have something to do with hormones. Should I see a specialist?


Most people who have well-controlled seizures are treated by a primary care doctor. But patients who have special concerns about seizures and hormones need a referral to a neurologist. A neurologist who specializes in seizures is called an epileptologist. A neuroendocrine specialist is a neurologist with training in hormone disorders and their effects on brain function. These physicians are usually found at hospitals or health care centers with programs devoted to epilepsy treatment, often called Comprehensive Epilepsy Center.




Will my insurance cover the cost of seeing a specialist?


Talk to your primary care doctor first about your concerns and referral sources covered by your health insurance. Your local Epilepsy Foundation affiliate may have information about specialists in epilepsy care who can help you.





Health as We Age

Can you be diagnosed with epilepsy as a senior?


Yes, some symptoms that people may think are signs of aging, such as lost time, suspended awareness, confusion, seizures, might be epilepsy. It affects about 300,000 seniors nationwide; most rapidly growing population group with epilepsy. In fact, epilepsy is just as likely to begin in your sixties, seventies, and eighties as it is during your first ten years of life. However, tracking down why a more senior person has seizures can be just as tricky as it would be in a young person. One possible answer is that older people are more susceptible to stressors and more likely to develop neurological or other types of disorders leading to the development of epilepsy. Other causes are after-effects of stroke, tumor, or cardiovascular events.




Are there added complications to developing epilepsy later in life?


Yes, seniors are more likely to fall and are often on more medicines that could interact with their seizure meds. Also, there are usually other complications due to aging that someone who develops epilepsy later in life has to consider. For example, someone older may already have less bone mass which puts them at more risk if they were to fall due to their seizures.




What kind of seizures can seniors have?


Seniors can have three types of seizures: simple partial, complex partial, and generalized.




What are the symptoms of the different seizures?


Simple Partial: Familiar things may seem unfamiliar Trembling that moves up one side of the body Unfamiliar things seem familiar Out of body experiences Sudden shifts in mood Unexplained anger or fear Disturbed speech Complex Partial: Lip-smacking Swallowing Picking at clothes Wandering Lack of response to others Repeated phrases Senseless, clumsy motions Lost time Disrobing Being briefly unaware of danger or pain Generalized: Brief staring Sudden muscle contractions Sudden falls Convulsions




Can a senior with epilepsy live independently?


Yes, although there are always exceptions, senior citizens with epilepsy who are otherwise in good health and whose mental abilities are unaffected can usually continue to live independently. One must note, when a senior with epilepsy lives alone, there are certainly risks. However, one can make small changes to their house to make it safer to live in, such as living in a place with little to no stairs or having carpeted floors. There is also technology now that makes it easier to connect with people if you need assistance. For example, you can make sure that you have a phone that you carry around if you fall. Of course, like everyone else with epilepsy, fire, water, and heat are hazards to seniors with epilepsy. But, the risk is no greater than anyone else with epilepsy who cannot perceive the threat during the seizure. Families may find it hard to allow their loved ones this independence. With the best of intentions, they often become overprotective, making an older relative more dependent than is necessary.




How has the perceptions about epilepsy changed over the years?


If you are a senior citizen, you can probably remember a time when there were no reliable treatments for epilepsy. People did not understand why seizures happened and they were afraid of them. You may remember, as a child, that families often sent people with seizures off to institutions, or kept them at home, isolated from others. And you may have heard it whispered (incorrectly) that epilepsy is a form of mental illness. Find out more about how perceptions have changed.