Karen's Story

Journey or Life Living with Epilepsy As I Had Epilepsy Since Young

Since 1 and ½ years old I’d fits till now. When I was young I don’t have any friends in school because when my fits happen, I’ll scream especially when I’m sleeping. Moreover, I may urinate on the urine mat when my fits happened for sometimes I was unconscious. Next, I was very quiet and will cry quietly when circumstances happen in my family or lonely. When I was in form 1-3, some teachers will talk to me only after I helped them.

After I finished my SPM, my dad wanted me to study Diploma and be independent till my parents left me in my granny house in 2005. I felt upset & asked myself/my parents why I’d this condition and how it happened after I don’t have a single friend & my boyfriend broke up with me. Besides, most of my course mates feared that I’m possessed especially Chinese people. Then, my granny told me I’d high fever when I was 1 years old after I kicked the cradle. My parents were working and my aunt overlook. Unfortunately, she thought I was possessed and brought me to temple instead of hospital.

In 2008, When I was 21 years old, nearly end of Diploma I started to have Christian friend & non-Christian that were international after the lecturer counselled, helped me to have friends and PR. As 25 years old, I realized I can sense my chest and heart beat not right before my fits happen but can control little and conscious although when my fits happen (hand shivering, heart beat fast & scream little). Unluckily, I’m still a slow learner and weak at calculation.

In 2013, doctor asked me to do MRI scan and told me that I’d slight problem in my memory/ numeric section (middle brain). Doctor also said I need to accept the fact that my calculation is weak and asked me to eat lamictal with Phenobarbital. After I heard doctor, I tried to go for counselling when I felt sad, studied on my fits and told HR on my fits before I started working.

In 2015, when my previous doctor retired, I saw a new doctor and she gave me Vimpat and Keppra but Vimpat caused my lip to dry out, untill increase the Keppra. 2016, I discovered that when my fits happen, when I eat banana and drink hot plain water by sip can help to calm my fits so it doesn't happen too often in 1 day.

Since after 2017, most of the companies I work forced me to resign/terminate me after they saw my fits or rest after I ate Frisium especially in Chinese companies. Then, doctor gave me Fycompa and reduced Phenobarbital. In 2020, when I work in Allianz Agency (ALCP), my fits happened 5-7 days continuously every month. After I felt very hurt when my manager/staff don’t understand or trust me when I advise on health, work or explain how my fits happen. Especially, my parents & boyfriend. I’ll get overemotional. Finally, I saw Dr Sherrini and do MRI & PET scan cause 8 years I didn’t do any scanning.

By Karen Ng Yen Ling

March 2021