R Madhavan Nayar Center for Comprehensive Epilepsy Care (RMNC)

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The R. Madhavan Nayar Center for Comprehensive Epilepsy Care (RMNC) is the largest center in India and South Asia catering to the diagnosis, treatment, awareness and overall welfare of people with epilepsy. In 1998, the comprehensive epilepsy care program of the department of Neurology of this Institute received a facelift when R. Madhavan Nayar made a generous contribution to augment its facilities and services. Since then, the program had been renamed as R. Madhavan Nayar Centre for Comprehensive Epilepsy Care. This center aims at facilitating and augmenting epilepsy care through a comprehensive care approach backed by sound academic and technological foundations.

Mission and Vision

1. Medical, surgical, psychosocial and occupational management of persons with epilepsy.

2. To widely disseminate the knowledge regarding epilepsy and its management among all strata of health care providers and public in order to improve the standards of epilepsy care and dispel the myths, fears and stigma of epilepsy.

3. Undertake clinical, applied, basic science and translatinal research and evolve cost-effective investigative and treatment strategies.

Objectives and Functions

1. Patient care at tertiary level: The outpatient program of this center includes evaluation on newly referred patients on a daily basis, review and follow up of more than 120 patients through the two epilepsy clinics, outpatient sessions for evaluation of speech disorders, neuropsychological concerns, occupational needs and behavioural problems and counselling sessions. The experienced epileptologists with special training attend to each patient and offer appropriate recommendations for investigations, management and counsel patients regarding their disorder. The psychosocial issues related to epilepsy are dealt with by expert psychologist/medical social workers and occupational therapist.

The inpatient services is based on the epilepsy monitoring unit with six video-EEG suits running round the clock for the diagnosis of various epilepsy syndromes. We routinely perform 2-3 epilepsy surgeries every week for difficult-to-treat epilepsies which are refractory to drugs. We perform approximately 1000 VEEGs and 100 epilepsy surgeries every year. We have performed more than 1300 surgeries so far through our program. Majority of our patients are seizure-free and medication-free after surgery.

2. Patient care at community level: We conduct an outreach community-based epilepsy clinics per month in a rural set-up in central-north Kerala. On an average 50 patients are seen in each clinic. In addition to basic care, patients who require advanced care are referred to RMNC. Through these community-based epilepsy care programs, we educate the primary and secondary care physicians, and educate the public about epilepsy.

3. Research: Active research in the field of epilepsy is an important mission of RMNC. Ongoing research projects include various newer research modalities in presurgical evaluation of refractory epilepsy including multimodality imaging in temporal lobe and extra temporal epilepsy, positron emission tomography-magnetic resonance imaging (PET-MRI) co-registration, electroencephalography-functional MRI co-registration (EEG-fMRI), role of diffusion tensor imaging (DTI) in tracking of eloquent areas, pharmacogenomic research of drug resistance and indigenous development of intracranial electrodes.

4. Kerala Registry of Epilepsy and Pregnancy < The Kerala Registry of Epilepsy and Pregnancy was established in 1998 in order to focus attention on the reproductive problems of women with epilepsy. This is the third of five registries of epilepsy and pregnancy in the world and the only one of its kind in Asia and Africa. The registry has offered commendable services to more than 2500 women and their children.

5. Human resource development: Two to four post-doctoral fellows (PDF) and four technology students are recruited every year to undergo training in clinical, electrophysiological and technological aspects of epilepsy management. The scholars who have undergone training through RMNC have established epilepsy care programs in different parts of India, and in SAARC countries like Sri Lanka and Bangladesh.

F A Q s

Psychological, psychiatric and behavioral disturbances are known to be associated with epilepsy, especially in patients with epilepsy that is resistant to treatment. The United States Commission on Epilepsy stated in 1977 that "possibly the least understood and the most neglected aspect of epilepsy is the social, psychological and behavioral problems that are so common". Social stigma, feeling of inferiority and insecurity, poor self-esteem and lack of confidence can aggravate disturbances that a person with epilepsy has.

At RMNC, we focus a lot on the psychosocial aspects and quality of life of people with epilepsy. We wish to address some of the issues (in a realistic manner) that dent the self-confidence of a person with epilepsy.

What does the word "psychosocial" mean? Do people with epilepsy have psychological issues?

The term "psychosocial" includes how you feel about yourself, how you deal with the stress of a chronic disorder like epilepsy, and issues involving your relationships with family, friends, or co-workers. People with epilepsy may be embarrassed or fearful about their seizures and they may have to face the ignorance and fear of other people. To treat epilepsy in terms of seizure reduction alone is inadequate; the associated psychological stressors also need to be addressed. Some people work through these issues on their own, and others may need some help from a physician, a nurse, or a professional counselor to deal with them effectively. Family support is integral in dealing with these issues

Dr. Alexander Jacob IPS, Director General of Police, Kerala Government, giving away prize to the best painting in a painting competition held on 20th November 2013, in connection with the national epilepsy day celebration.

How do I tell other people about my epilepsy?

Have a positive attitude about yourself. Epilepsy is only one of the several illnesses commonly seen in the community in any part of the world. There is nothing to be ashamed of in other people knowing that one has epilepsy. Whenever possible, choose a comfortable place and enough time to keep you from feeling anxious or rushed when you talk about your seizures. It may be helpful if you have written material available with you about epilepsy to share with other people and dispel their misconceptions.

I'm planning to get married. Should I conceal the fact that I have epilepsy from my fiancée and his/her family members?

It may be especially important to tell your fiancée about your seizure disorder so that there won't be any unexpected surprises or disappointments in future life. Keep a positive attitude about yourself and epilepsy, and he/she probably will, too. Though we have seen that disclosure is not entirely without its problems (because it often results in breakup of marriage negotiations), it is also evident that concealing epilepsy would, in all probability, have long-tern disastrous consequences on married life. Therefore, honest prospective communication about epilepsy is important for nurturing a fruitful married life. If you desire, we can provide realistic information to the prospective spouse and his/her family about the medical and social aspects of epilepsy. Being employed is important for a woman with epilepsy as it makes her less dependent on the spouse and family on money matters, and more confident in making independent decisions. The more the woman and her parents view her disease as a stigma, the more they anticipate negative consequences of disclosure, and concealment becomes their coping strategy. One's belief in one's capabilities is highly essential.

Can my mood, behavior and personality be affected by epilepsy or my medications?

Mood and personality are affected by many factors. Certain kinds of seizure disorders appear to affect mood and behavior during a seizure, and even an aura (premonition of seizure) may change your behavior patterns. But seizures (and auras) are intermittent events and it is not clear how epilepsy affects general personality traits. 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 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. They may refer you to a professional counselor (social worker, psychologist or psychiatrist) to help you address these issues.

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.

In addition, medications for epilepsy may have side effects that result in mood changes. A few of these medications 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 doctor.

I feel like epilepsy keeps me from leading a normal life!

It's understandable that you feel that way. Epilepsy does interfere with certain aspects of life, especially when you are dealing with poor seizure control. Taking medication daily, having regular tests, or keeping seizure records is time consuming and a frequent reminder of a chronic disorder. For some people, there are more difficult restrictions, such as inability to drive or make certain career choices.

Seizures are unpredictable and may limit some of your independent activities. Other family members and friends may be concerned and overprotective and, as a result, you may feel dependent. Realistically, some people with epilepsy may have to depend on others to help with certain tasks of daily living.

Try to be cheerful and positive in your attitude with your own effort; it helps to focus on your abilities, rather than defining yourself by your restrictions. Think of creative ways to solve the problems in your life, such as sharing your problems with friends, learning about public transport options if you can't drive etc. At the same time you need to be realistic about the problems.

Talk with your family and friends about these issues and your feelings. Insist that you need to be involved in the plans and decisions that affect your life. And don't hesitate to ask for help if you need it, including professional counseling. Always remember that any person in society can have similar problems as you are facing.

Can I have a normal sexual relationship even though I have seizures? Can I get married and have children?

Yes, you can. Sexual relationships are a normal part of healthy living, and people with seizures can marry and can lead a normal marital life just like anyone else. Women with epilepsy get pregnant and most of them have normal, healthy babies. If you experience some specific problems associated with seizure disorders that interferes with your sexual expression and if there are some concerns related to seizure control, certain medications and other significant issues that are important to discuss with your doctor before you become pregnant.

I am a person with drug-resistant seizures. I am used to a monthly number of brief seizures which are very less as compared to my pre-treatment status. My doctor feels I need not worry about these brief seizures. Is it so?

It is normal for any person to be concerned about having epilepsy. Be clear about what issues you would like to discuss. Keep written records of your seizures, response to medication, concerns about side effects, and any other questions you have. Take this information with you during appointments to share with your doctor. Take a friend or family member with you if they can help you share information about your seizures that might help the doctor. You need to decide for yourself if the seizures are sufficiently disabling to your lifestyle or interfering with your work.

You and your doctor are partners in your care. Your physician has the medical knowledge, but you are the expert on yourself. If you are not satisfied with your doctor's response to your concerns, discuss this with your doctor, and if the relationship does not change, consider choosing another physician.

I recently got married and I am pregnant. Because I am on anti-epileptic drugs, is there a risk of my child developing any problems? Can I reduce the dose of medicines? Do I need to undergo an abortion? Will my seizures worsen in pregnancy?

In one sentance we could summarize that most women with epilepsy would have safe pregnancy and healthy children. The risk of birth defects in the baby is around2 to 3 per hundred births, in the case of in the society (ie. mostly women without epilepsy). In the case of women with epilepsy, the risk is around 7 - 8 per 100 births. In other words, more than 90 percent of cases the babies are healthy and the pregnancy is without any complications

Whatever be the cause of the malformations, they do not occur often enough to support avoiding or terminating a pregnancy. However, if a 4-8% risk of having a child with a malformation is unacceptable to you, it is important that you make the decision that's best for you. Do remember that there are pre-natal diagnostic tests that can detect these malformations within the first twelve weeks of pregnancy. The decision to do these tests should be made in consultation with your doctor. The physician can also decide what minimum dose of drugs you need to be on.

Stillbirths or miscarriages are also slightly more common for women who have epilepsy, occurring in 1.7 percent of pregnancies. The blood levels of the drugs you take can be altered in relation to the normal changes that happen to the body during pregnancy. Do not attempt to alter the doses of the medicines without consulting your doctor as the recurrence of seizures can harm the baby as well as yourself./span>

We have a special registry catering to women with epilepsy who are in the reproductive age group called KREP (Kerala Registry for Epilepsy and Pregnancy) headed by Professor Sanjeev Thomas where a group of doctors and other counselors impart the necessary treatment and provide all the information about these issues to women with epilepsy and their families.

Is there a role for counseling in dealing with the issues I have?

At SCTIMST, we do conduct group/individual counseling sessions where the participants share their experiences and a professional team comprising a psychologist and a medical social worker reinforce positive approaches, attitudes and achievements of the participants. In addition, information about psychosocial, educational and employment aspects of epilepsy are provided by the professionals.

What is meant by QUALITY OF LIFE (QOL)?

The goal of any treatment for epilepsy is to control or abolish seizures altogether. However, one soon realizes that control of seizures may not necessarily bring back the patient to normal life. On the other hand, there are many patients who lead normal lives despite continuing seizures. Hence, health related QOL is an honest judgment of one's well-being based on consideration of physical, mental, social and general health status. The key aspects to ensure a good QOL are:

1. Understand epilepsy.
2. Ensure that you take your medicines in the right doses and schedule without skipping them.
3. Avoid sleep deprivation.
4. A healthy lifestyle including an appropriate diet and exercise schedule is something advised to normal individuals. This applies to patients with epilepsy also.
5. Realize one's limitations but do not get tied down by it. Pursue meaningful employment and try and become self-reliant in the process. Children with epilepsy and mental retardation need to be offered vocational training.
6. Behavioral problems and psychosocial issues need to be discussed with the physician and appropriately managed.

Faculty

• Neurologists/ Epileptologists