living with epilepsy

Did you know it’s Epilepsy Awareness Month?  Don’t worry, I didn’t either… so get ready for my story and some learnin’!  OH!  And purple is the signature color!

check out this site! it’s great and super informative!

As I mentioned in a post a while back, I have epilepsy.  I was diagnosed my senior year in high school.  I had a major grand mal (now called a “tonic-clonic” seizure) seizure in my parent’s living room  Prior to this, I had been having intense dizzy spells for weeks.  They would get so bad, I would get sick to my stomach and sometimes almost pass out completely.  Then I had the big seizure.  My parents freaked out of course and called the doctor.  They were familiar with seizures as they seem to run in the family on my dad’s side.  But still, I had never had any indication prior to this evening so they were scared.  From what my family has told me, the doctor thought it could be a brain tumor and appointments were made  for the very near future.

this isn’t my eeg but this is what epilepsy looks like in brainwaves

This all happened a couple of days before Thanksgiving.  After a number of appointments and tests the conclusion was juvenile onset epilepsy.  I’m not sure exactly what type of epilepsy I have but I will ask my neurologist during my next visit.  Since I am from such a small town, the nearest neurologists were in Seattle.  After several tips for all my testing, we were able to find a neurologist a bit closer.  As we would come to find out he was a little troll of a man/doctor.

My diagnosis came in January and the next few months were a blur of lots of meds, throwing up (side effects of some of the medications) and EATING!  Oh my gosh, I was hungry all of the time.  I gained 30 pounds in 6 months.  The medication, weight gain and my life altering diagnosis left me very depressed.

I finally talked to the troll (my doc) and found out he knew I would gain weight since a side effect of the meds was non-stop hunger but he wanted me to take it so he didn’t tell me.  We dropped that doc, found a new one and switched meds.  The troll also  told me I would grow out of it in 2 years.  I latched onto this date as a lifeline.  Within a month of my two anniversary of my first seizure I had another grand mal seizure at college.  Once again, I fell into a slump.  My new doctor let me know I would probably never grow out of it and there had been a malformation in my brain while in the womb.  I would be on meds for the rest of my life.

James Madison (4th pres) is thought to have had epilepsy… many individuals still do not make it public

It took some time for me to come to terms with my condition.  I used to always think of myself as invincible but I learned I had to deal with life completely differently then how I had the first 18 years of my life.  I still struggle at times to balance my epilepsy with the rest of my life.  My meds make me tired – as in zombie exhaustion!  I’ve learned that if I don’t take care of myself, sleeping, eating and hydrating properly, my brain gets kind of angry.  Stress can be a huge trigger for me.  I still get the dizzy spells and these are a major red flag for me – I usually halt what I am doing and rest up, drink plenty of fluids and take it easy for a few days.  I get migraines (may or may not be related).  Sometimes, even if I want to do something fun, I can tell I am TOO tired and I’m risking having a seizure.  I would say weighing my life choices with whether or not it could lead me to have a seizure is a constant.  But what REALLY irritates me is because my meds have to slow down my brain, sometimes I can’t think of the right words or I struggle getting a thought out.  This is fiercely annoying since it makes me feel stupid.  It’s worse when I’m low on sleep!

Brain cells need to work (fire) at a certain rate to function normally. During a seizure, brain cells are forced to work much more rapidly than normal. Carbamazepine (this is the type of med I take) helps prevent brain cells from working as fast as a seizure requires them to. In this way, seizures can be stopped when they are just beginningsource

All that being said, I have very good control.  I’ve learned to listen to my body and pay attention to signs and do what I need to do before something bad can happen.  My medication does work and for that I am immensly grateful.  There are times when I say something along the lines of, “I need to go home NOW”.   Close co-workers know that I do need, indeed, to get home.  I also have learned not to let epilepsy lead my life.  I’ve done almost everything I’ve ever wanted, met challenges head on and if there is/was something I haven’t been able to do I work through it.  I also never use the word “epileptic”.  My epilepsy doesn’t define me, it’s a part of who I am.

Running (any form of exercise really) helps since it can regulate my sleeping as well as mitigate some of my stress and anxiety.  Funny, while I was writing this, I was reading online information and I learned a few things.  Rates of depression and anxiety are higher in individuals who have epilepsy and it’s typical for people to also suffer with sleepiness even when it’s not associated with meds.  Crazy!  But helpful!  Sometimes I feel so lazy and it’s nice to know it’s related to my condition.

medals also help – not sure how but i’m convinced!

Unfortunately, many people are still afraid of epilepsy and there are huge misconceptions about those who suffer from it.  While we have come a long way from when people used to believe seizures were a sign of demonic possession, many are still really intimidated by this condition – mostly the symptoms.  Seizures can be scary things but the more you know the better off we will all be!  So, if you have a spare minute, check out this site!  Awareness and support are critical for those who have epilepsy.  I know there are days when I just want to be “normal” but that my condition prohibits this.  Having a supportive family, friends and co-workers helps.  I don’t often talk about it but have come to realize maybe being more vocal can help.  This will be one of my future goals – thanks for reading!

6 thoughts on “living with epilepsy

  1. I had no idea you had epilepsy, thanks so much for sharing your experiences and what you are going though. You are amazing! A lot of people definitely don’t know much about seizures, I’m so glad you are posting about it and increasing awareness!

  2. Wow – thanks so much for this post. This is one of the billion-ish medical conditions I am lucky enough not to suffer from and haven’t done any research on it. It’s so interesting – we all have our own little health issues we keep close to the vest, and I love when people open up about their “thing”… you get to learn something new about a bitch of a condition and also a little bit more about someone close to you.

  3. Learned something new! I agree with not letting these things define us and not associating a label with us. I was diagnosed with breast cancer in 2004 – I have NEVER liked the “survivor” label – I always pride myself in being “more than a survivor”.

    Heck, a medal has many magical powers and benefits. It allows us to imagine being in first place and receiving that victory medal. When I run, I just know I look as graceful and fast as Kimba . . . of course that is obviously wrong . . . not in a million years, but heck i can dream it.

    Be well and Enjoy every moment!

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