Epilepsy and me

November is an awareness month for pretty much every causes and cancers, but the one that hits home for me is Epilepsy. November is the month of Epilepsy Awareness and although I’ve talked my condition before, I would like to share my story with you. It has always been a personal goal to talk about epilepsy because there are a lot of misconceptions regarding this neurological condition and I like to inform people so they are confortable with epilepsy.

Last time I blogged about obtaining my learner’s and a lot of you were interested on how epilepsy has affected my life. My story is not as dramatic as some other epileptics but epilepsy has played a major role in a lot of decisions I took. It also has had negative but also some positive effects on my life. Gather around children, as I tell you my story!

I started experiencing jerks in my arms around the age of 13. I remember clearly experiencing a jerk in my arm during summer camp, I thought it was due to fatigue so I didn’t think much of it. However, they started occurring weekly,and then daily. My parents thought it was just a phase but it eventually got bad… The jerks would occur in the morning, when I was tired and stressed. I would have them in my arms all the time and I had stopped eating breakfast because it was always upsetting to me: I would break glasses and plates daily.

Eventually, my mom brought me to a doctor because I started getting these jerks in my legs: I would walk and randomly fall on the ground. We were referred to a neurologist who did some tests but we never heard from him ever again. A year later, we got a call from Dr Jeffrey Jirsch from the Montreal General Hospital. The EEG I had done a year before showed signs of epilepsy so we did more EEGs, MRIs and other tests. Finally, by the age of 17, I was diagnosed with Juvenile Myoclonic Epilepsy.

Juvenile Myoclonic Epilepsy is a type of epilepsy that develops when you’re a teen and that most people will have for the rest of their lives. Luckily, it can easily be controlled with medication, but its a matter of being responsible and adopting a healthy lifestyle. I first was really depressed about my diagnosis and was extremely sensitive about people knowing until I realized how sweet and understanding my classmates were. I was prescribed Frisium but was quickly switched over to Keppra as it wasn’t working well for me. I started on a very high dosage of Keppra and would sleep all the time. I didn’t like taking it so I often skipped it. One time in March 2009, I skipped my meds and went to work early. I later attended a party and drank a lot. I crashed at my boyfriend’s (at the time). The next morning I wasn’t feeling too well but left for work anyway.

I was walking to the metro… that’s it. I don’t remember what happened. About 30 minutes later, I regained consciousness; I was on the ground, blood all over my face. My head hurt like hell and I was confused. I realized that a paramedic was trying to talk to me but I had a hard time talking… He then informed me that I just had a seizure and everything would be ok. I then asked for my cellphone, called my boss and told him I couldn’t come to work. I then called my dad, who was 2 hours away, and told him what happened.

Everything else is still a blur to me today. I remember doing some tests and staying some time in ICU. I felt very lonely and a cute nurse came to clean the blood of my face. I started crying because I was worried of having scars and he was so sweet and said that I was too pretty and even with scars, I would look beautiful. My older brother then arrived: my dad had called him and told me to get here ASAP. My dad arrived a bit later and I was later discharged. I slept for 2 days straight and missed a week of school.

After that, I never skipped my meds ever again: I learned the hard way that alcohol, stress, lights and fatigue were my triggers and that I needed to adopt a healthy lifestyle or it would happen again. I did have a seizure in my sleep after that but it wasn’t s bad as the previous seizure. Since then, I’ve been careful about getting enought sleep and not drinking too much. I can hold my liquor very well but I never get too drunk… Costs too much money in drinks to get to that point anyway (haha). I also only drink with people who are aware of my condition and know what to do if something were to happen.

For the last 6 months, I’ve been very depressed and anxious and we’ve realized last Monday that these were very likely side effects from Keppra and I’m now starting on a different medication called Lamictal. I’m already starting to feel a difference: I feel that I have more energy and I don’t feel tired all the time!

So what are positive things I’ve learned from being epileptic? Honestly, I don’t think I would be such a strong person if I wasn’t epileptic. Yeah shit happens in life, but I can stay here and cry myself to sleep because I have an incurable neurological condition. I don’t need pity nor do I think I’m a pitiful person. I also don’t think I would be as healthy as I am: I take care of my body since pretty much everything can be linked to my epilepsy.

Epilepsy is something that’s part of me and its probably going to be the case for the rest of my life, but it’s not something that defines me or controls my life. I’m lucky: I have control over it. I can now drive. Yeah, it set me back in my studies but I realize that it’s kind of a good thing; I’m a lot more serious about school and goal oriented compared to my younger classmates!

I think this goes to show that anyone can turn a bad situation into something positive for you and other people around you!

Epilepsy is not something a lot of people talk about: a lot of us are shy to talk about it because there are a lot of social stigmas surrounding it so I would like you to feel free to ask ANY questions. Honestly, there are no stupid questions about epilepsy, only opportunities to learn and now is a pretty good one! So please ask me anything in the comments or if you are shy, by email!

 

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  • thank you 🙂

  • Oh Turtle, I’m not ignoring you =O

  • turtle

    you always have turtle supporting you. even though lately you ignore me a lot =.= no matter what kind of poo day you’ve had, im only one app click away~

  • <3 u!

  • Ellie S

    very touching story, very inspiring.

  • Hi Bahiyah! Thank you so much! You stay strong too 🙂 ♥ ♥ ♥

  • Hi there. I’m from Malaysia. I like u, u’re very honest & inspiring! Stay strong! ♥‿♥

  • I love you too!!! <3

  • <33333333333 I love you.