Women With Epilepsy

Disha (incidentally, it also means a direction), was upset about having epilepsy. She loved developing computer programs- at times working late hours, but thought that her seizures daunted her task by limiting her activities and sleep. I tried to explain to her, how instead she could take it as an opportunity to have a accept this challenge, while controlling her epilepsy with lifestyle changes with medicine optimization, and changing her life. She accepted the challenge. It wasn't easy. It was a battle with seizures, whilst we steadily worked on her medications and planned for her epilepsy surgery- that resulted in her seizure control. It was a daunting though to begin with, that needed a firm support from Disha's family. This helped us to take our time in planning the perfect plan for her seizure control. Here, it is important to mention that her will power and faith in us, was crucial in planning for epilepsy surgery.

Today, I get awestruck by Disha multitasking capabilities, that of a successful professional, mother, wife and a daughter. She enjoys swimming, sports and rock climbing as well. Her father jokingly tells that epilepsy steered her life’s direction (disha) to positivity.

If you are a woman with epilepsy of any age- don’t worry about ongoing seizures, for we will provide you with the best solution to control these. Be a proud member of society to fight the cause. It’s time you set an example for everyone around, in a most undeterred, no-nonsense way.

In this article, I have tried to answer the questions of young and old women who attend my epilepsy clinic.

I am a young girl suffering from epilepsy. I feel depressed, lonely and I find it hard to digest why I have to face it every single day.

There are close to 1.5 million women with epilepsy (WWE) in reproductive age in India. About a sixth of WWE in the world are living in India. It is estimated that there are about 2.73 million WWE in India and more than half of them are in the reproductive (15-49 years) age group. Womanhood facing seizures, you are not alone and it’s time to stand together to fight epilepsy. It is just one of the ailments, where taking regular medications can result in a significantly normal life.

I am 26 years old, I have seizures for last 8 years. My parents are worried about my marriage. Can I get married if I have epilepsy?

Today, PWE can have a successful marriage, and epilepsy is no more an illness to claim for divorce. I reiterate here the importance of eradication of epilepsy as a social stigma. People all across the globe do lead fruitful lives even while facing epilepsy. A sound understanding between the partners is paramount for a healthy family relationship. Unfortunately , today more than half of WWE concealed their history of epilepsy prior to their wedding, fearing social stigma and breakdown of the marriage negotiations. Management of epilepsy in women requires not only knowledge of epilepsy, but also recognition of the various roles and priorities women have in their lives (education, career development, child rearing, the role as carer within the extended family),which would have an impact on their wellbeing throughout life. I have seen women with complex refractory epilepsy blossom with successful families, wonderful kids, and satisfying careers, all with support from their understanding husbands

I have tried to discuss a few questions frequently asked by my patients in our epilepsy clinic.

I am 33 years old suffering from seizures. I recently got married. Can I plan for a healthy baby?

Most women with epilepsy can become pregnant, carry a child successfully through pregnancy, have normal healthy babies and breast feed them. It is important for you to know, however, that pregnancies may be higher risk for women with epilepsy, because of the possibility of seizures during pregnancy, the effects of antiepileptic drugs (AEDs) on the fetus, and the effectiveness of contraceptives in combination with AEDs. In any case, anti-seizure medications should not be abruptly stopped if a woman becomes pregnant. Among other recommendations, women with epilepsy should be taking folic acid, and physician needs to know if they are taking birth control pills. All these issues should be discussed with the doctor so that everyone is aware of certain issues and making informed decisions and behavior choices.

Doctor, if I happen to successfully conceive, what are the chances of having an abnormal pregnancy outcome?

A normal pregnancy can have a risk of Major congenital Anomalies of about 1-2%. Exposure to ASMs (Anti-Seizure Drugs) in the first trimester of pregnancy has been associated with an increased risk of major congenital anomalies (MCAs) in offspring by two to three times of that of the normal population. This risk , however, could be lot higher for women on more than three ASMs. MCM (Major congenital malformation) is defined as an abnormality that can interfere with the quality of life and warrants definite management. Among the predictors of seizures during pregnancy in WWE, the main observations were that women with partial seizures on ASM polytherapy or with at least one seizure in the pre-pregnancy month had higher risk of seizures during pregnancy. The data suggested that the malformation recurrence risk may be dose dependent, and at low dose, there may not be increased risk of recurrence.

What about the Chances of my baby getting epilepsy?

This depends on the kind of epilepsy. Structural causes of seizures such as those resulting from infection, injuries, and stroke are unlikely to be transmitted to the next generation. Primary Generalized epilepsy and idiopathic (i.e of unknown cause) focal epilepsy may have an overall incident risk of 2.5%. This risk for this, with all kinds of epilepsy put together, may rise to up to 5% in the offsprings. This still is towards, the lower side, and should itself, not deter couples from convceiving if there is a history of epilepsy. We need our society to work together to remove the stigma around this condition, as it is not much different from managing any chronic ailment, that may need long term medications.

So what precautions should I take prior to conceiving, so that I have the maximum chances of having a healthy pregnancy?

Studies have shown that WWE who were seizure free in the 9–12 months prior to pregnancy had an 85% chance of remaining so during pregnancy, so a good seizure control is to be aimed prior to conception

Preconceptionally Folic Acid should be started to avoid neural tube defects.

All WWE who are using ASMs are advised to take vitamin K at 34 and 36 weeks of pregnancy as it reduces a condition associated with bleeding in the Newborn, which may be aggravated by ASMs.

My younger girl is fourteen, and has a kind of genetic epilepsy. She feels lonely at times, and avoids company. Can She live in a hostel?. Her seizures are not very frequent.

Your daughter is going through Pubertal phase. Puberty is the time in life when hormonal changes in the body cause sexual development to begin. This can be a time when you don't want to feel different from your friends, and having epilepsy can be an added challenge. Anti-seizure drugs (ASMs) are usually taken to try and stop seizures from happening. Some of them regularly have their seizures at a particular time during their menstrual cycle. Keeping a seizure diary can help to keep track of her seizures, to see if there are any patterns to when they happen. There is no reason why Epilepsy should deter her from achieving her dreams. As long as the basic safety precautions and a healthy lifestyle coupled with regular medications are followed, there is no reason why your daughter won't have a promising future, even in the face of epilepsy. This is a message for all young girls, with and without epilepsy to understand epilepsy, its science, and its victims and come together to support the cause.

I am 23 years old married woman, with a kind of epilepsy, and I still don’t want to have children. What kind of contraception is advisable?

Visit your doctors for understanding the contraception methods and interactions of medicines with the pills. Some methods of contraception may be less effective in preventing pregnancy for women taking certain anti-seizure drugs (ASMs). This is because some ASMs (enzyme-inducing ASMs) affect how well methods of contraception work. Non-enzyme-inducing ASMs are unlikely to affect contraception. You may want to talk to your neurologist of a family planning advisor about the combination of ASMs and contraception that is best for you.

My mother is 57 years old and recently, had a fall during a seizure.. Is there anything I could do to help her ?

Your mother is probably in post menopausal stage. Epilepsy and taking anti-epileptic drugs may contribute to the risk of developing osteoporosis for some people. Having epilepsy and taking anti-seizure drugs (ASMs) may contribute to the risk of developing osteoporosis, and this risk will vary from person to person. If you have concerns about osteoporosis, talking to your neurologist about having your vitamin D levels checked or a bone density scan might help. This would ensure that the chances of sustaining fractures after trivial falls could be reduced.

Please contact Consultant Neurologist and Epileptologist at Apollo Jubilee Hills, Dr Madhuri Khilari for any further questions