Events & News


Seizure star: Christina Dykenga

Christina, you have been chosen as the September 2018 Epilepsy Star and are being featured in this issue of our quarterly newsletter. Tell us a little about yourself

I am a social worker for a medical insurance company. I live in West Milford Nj and I care and manage those with developmental disabilities, cognitive impairments and behavioral health conditions. I believe all three are intertwined. I work with all ages and functioning and provide education as well as authorizing equipment and referral to physicians. 

How did epilepsy first touch your life?

My first encounter with epilepsy was at age 17, when I had my first grand mal seizure. Looking back, my mother recalls instances of staring, and dropping things as well of a lot of déjà vu moments. After my first encounter with an epileptic seizure, I took medication for about a year and then that doctor told me I could stop it. I remained stable until 2009 except for the staring and déjà vu episodes. In 2009, I started having many grand mal seizures again. Just like before, I was placed on medication. I went through some changes and dosage was added. With that, I was stable until 2016 when I had several grand mal seizures. As a result, I was on disability for over 6 months. 

What has your journey with epilepsy been like? 

I have no aura; so sometimes I would injure myself because the seizure would come without any warning. I was tried on various medications by the neurologist who manages my migraines, but to no avail. I struggled feeling terrible guilt because my children witnessed these frightening seizures. It took work to understand that this was not my fault and I was also able to educate my family about this. He then decided to refer me to Dr Enrique Feoli, epileptologist at the Northeast Regional Epilepsy Group in Bergen County. Dr. Feoli expedited a 48 hr video monitoring study in the hospital to see the exact location of the seizures. Following this, they understood that I had uncontrolled epilepsy and he recommended a vagal nerve stimulator (VNS) implant.  I had this done August 2017 and haven't had a seizure since. I not only had Dr. Feoli, I also had an excellent neurosurgeon who performed the implant. There are mild side effects (hoarse voice; loss of some hair and graying) but they are bearable comparing to a seizure. I consider these side effects and scars part of my journey. 

Dr. Feoli gave me my life back; he has a wonderful bedside manner and truly wanted to help me.  As a result of his care, I was able to go back to work and after 6 months of being seizure-free, I was permitted to drive again.  My job provided a position working from home. Even though I can drive, I do it as little as possible anyhow.

How have you been contributing to the epilepsy community? What sort of advocacy are you involved in?

I got my Master's degree in 1997. I always wanted to be a social worker since childhood. I knew I wanted to help others.  Currently, I am part of an online group called "My Epilepsy team: where I provide assistance and education.  I also volunteer with the Epilepsy Foundation of New Jersey. I also belong to a group in my town called Help a Neighbor, which provides assistance to families in my community. 

The last year has not been easy; I developed heart failure, as well, which requires careful monitoring. I have also battled terrible medication side effects, it has been difficult to find the right combination, but I always felt that Dr. Feoli never gave up on me and that has helped me feel more confident every day.   I know that Epilepsy will always be part of my life but I do what I can to avoid bringing on seizures, such as getting enough sleep, consulting a doctor before I take other medications and finding ways to keep organized at my job which is not easy since my memory has been affected. I am a warrior who refuses to give up. You too can be a warrior.  

I worked in psychiatry for several years but I felt I had more to give. I was hired as a care manager for Medicaid. I did Home visits as well as telephone support to members that have development delays, cognitive impairments and behavioral health issues. These issues and Epilepsy are very much intertwined. 

This year, I really wanted to attend the National Epilepsy Walk, however, I couldn't take any more time off of work.

I plan to do the upcoming Glow Run/ Walk on October 27 that benefits the Epilepsy Foundation of NJ as well as provide education and support to my members, the community and support groups.

This year, I would like to become more of an advocate and speaker as to my experience regarding epilepsy, medications, and other treatments.  I would also like to educate others about the importance of seeing a neurologist who specializes in Epilepsy as well as various treatment options. I feel that more people need knowledge about the various types of seizures and what caretakers can do to best manage this diagnosis. I have come across many people that have misconceptions, such as "someone can swallow their tongue during a seizure (which is totally false) and what you should and shouldn't do during a seizure (many of the recommendations are also untrue). 

Though I never disclose my epilepsy to my clients and members, I am able to be supportive in a way that others may not. I also have 2 family members with epilepsy, so I know what they go through and can provide the support they need.

What would you like to see in your future?

I would also like to be involved in new treatments available so I can expand my knowledge.  I would like to see increased advocacy as well as new treatments studied to treat epilepsy as well as managing the side effects. 

I am extremely grateful to my neurologist for referring me to Northeast Regional Epilepsy Group in New Jersey and to Dr. Feoli for greatly improving my quality of life. I am eternally grateful to my husband of 20 years, my high school sweetheart who has been my rock through all of this and grateful for my wonderful daughters ages 18 and 14. I am very lucky that I can drive and work as a senior social worker for a wonderful company that gives me opportunity to give back. 

Thank you, Christina, for answering our questions and we wish you the best in your future endeavors within the epilepsy community!

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