Me and My Meds: A Love Story

Medication, a necessary evil.
Side Effects, their extra evil twin brother that comes to kill you in your sleep (specifically those found in daytime television Soap Operas).

My doctor prescribed me medication immediately.  As a a woman of child bearing age, I was limited.  If I wanted to save my future kids from having two heads (better than most of the possibilities) then I had a pretty slim choice of medications.

So, I was put on a low dosage of Trileptal (I swore I was on Lamictal but when I reviewed my medical records, or what I could find of them, the paperwork says the other).  I have to admit that I can't remember the dosage (this was October 2005 after all) but it was low, I'm going to assume it was something like 150 mg per day (online says this is the lowest dosage available so I'm going with it).  Either way, it wasn't very much.

Let's talk about how much Trileptal didn't work.  I was tired.  I was, just, off.  I felt different.  Worse than that was how it triggered seizures whenever I missed a dose (I know, I know.  You can't miss a dose, but I was 18/19 and living on my own for the first time, going to school and working...it happens!).  Also, if I took the medicine a little late, hello episode.  Wanna know something even more awesome?  I was still having seizures.  Yay.

My records say I saw my doctor in August 2006 and that I was still on the meds.  So, I spent a year in this endless cycle.  It was shortly after that visit that I chose to go off of the medication.
(Rogue Disclaimer: I'm not saying this was a good idea.  I'm just saying that I did it.)

For three years I made it work.  I knew my symptoms and signs by heart and could predict a seizure coming from a mile away.  I rarely missed school or work.  I hung out with my friends and I successfully hid each and every seizure I had for three years.  People knew I had bad days but, they didn't look at me and see epilepsy scrawled across my face.

It was just me and my demon.  And we managed.  We worked it out.  He got me at night.  On weekends.  At quiet moments, where I could mention a headache and slip away.  My demon held me captive, but he let me continue to live.

Then heartbreak came with more heartbreak scooped on top with heartbreak sauce drizzled all over and heartbreak sprinkles in a heartbreak bowl eaten with a heartbreak spoon leaving me with heartbreak freeze.

I waited.  Where was he?  Where was the fading, the ache, the haze, the panic, the pain?  I waited.  My demon stayed buried, crouching in the shadows.
Where was he damn it?

I got busy being broken.
I got vulnerable.
I got attacked.
I got beat.
Black and blue.
(there is much, much more to this...but for another day)

So, ambulances got involved and emergency rooms and hospital stays and MRI's and new medication was prescribed.

Topamax.
Damn Topamax.
Hi, my name is Topamax and I will consume you in a way that makes your demon seem like a childhood friend.  Have a great day!

In June 2009 my doctor worked me up to dose of 100 mg per day.
Topamax and I did not work well together from the start.  Three months and thirty pounds lighter, I was fading.  I was weak, I was wasted away.  My skin was pale (paler than my usual alabastery shade) and grayish.  Dark circles and all.  My arms, hands, legs and feet would routinely go numb.  Everything I ate tasted like, well nothing.  I didn't want food, I did eat food.  My clothes grew bigger and bigger.  I just wanted to sleep.

And I still had my demon, seizing away.

Eleven months later, it was time to find a new doctor (grrr...more on the old one later).

New year (2010), new doctor.  This time I found a woman and she was better.  Much better.  New doctor talked to me, listened, replied, discussed, seemed to actually care.
But
She kept me on Topamax, raising the dosage.  We topped out at 900 mg per day about three months later.
My mother and I set up an appointment and after some pleading, it was agreed that we should be trying something new.
Next she prescribed Keppra.
Keppra was better, less severe, fewer side effects, all that jazz.  It took us a few years, more breakthrough seizures, a trip to the ER (darn roll-y chairs), and multiple doctor appointments but we got them stopped (for the most part).  All it took was 3500 mg per day.  Yes, 3500.  Anything less wasn't strong enough.

This dose stopped almost everything.  The shaking, the fear, the blackouts, the clenching, the metallic taste, the mumbling.

But, the biting continued from time to time, and certain feelings were there in the background.

He was there.
My demon.  Prickling on the edge of the medication created force field.  Giving it a kick occasionally, just to remind me not to get too comfortable.  That he's there.  That he's mad.  Don't forget.

The meds keep him from taking me over.

But he's there
and sometimes, I miss him.




http://www.rxlist.com/trileptal-drug.htm
http://www.rxlist.com/topamax-drug.htm
http://www.rxlist.com/keppra-drug.htm

Welcome

 Hello and welcome!!  

I don’t know how you ended up here, perhaps by accident or by bribery or by my mothers insistence, but no matter what, I’m excited to have someone, anyone, join me in this journey.

What journey?

Well, that will require some background, which will follow, but here’s a quick overview so you know what you’re getting yourself into.

I am a twenty-seven (holy begeeses that’s old and scary sounding) grad student who is currently working part time, substitute teaching, and who fancies herself a writer.  

This, however, is not why I have chosen to start this blog(I’ve got others that you’re welcome **hint hint** to check out).  This is for a specific purpose, to discuss my ongoing struggle with epilepsy.  I’ll discuss what I’ve been through and the steps I’m taking today to help combat this beast inside my head.  I’ll try to keep it light but be prepared, this blog is going to be the expression of my literal demons and some tough emotions, struggles, and decisions will be described in great detail.  I hope my own experiences will be relatable, informative, and perhaps at moments inspirational.  

 

I have one other warning or perhaps disclaimer; this is my story, my life, and my battle.  I have at times gone rouge in my treatment and do not encourage others to follow in my,at times, damaging footsteps.  I have also chosen some unorthodox methods of treatment (this is something that is new and I don’t know the outcome yet). I plan to keep a pretty detailed account of how it goes for me, but I understand that some of the choices I am making may be against certain (many) medical opinions and I do not want anyone to feel like I am stating anything more than my opinions and experiences here.  

 

So, now that we’ve gotten that out of the way, let’s begin!