Epilepsy

When Medication Stops, The Fight Doesn’t Stop

Diagnosed with epilepsy in 2008, I will have been living with epilepsy eight years. In 2002, I was met with my very first grand mal seizure at the age of sixteen. Placed on two different types of medication for a year. This tamed the beast until it awoke again in 2008.

Over the course of eight years, I’ve been a passenger riding the ups and the downs of many medications. At least eight different antiepileptic drugs (AED’s) in total.

There are several types of epilepsy. Recently, I discovered that I in fact have Refractory Epilepsy. This particular type of epilepsy means that medicine isn’t bringing your seizures under control. Other different phrases might be used to describe this including:

  • Uncontrolled
  • Intractable
  • Drug resistant

Within these eight different AED’s I experienced what neurologists like to call “The Honeymoon Phase”. For a brief moment, I breathed a sigh of relief as the beast of my seizures had been tamed. Thinking “Perhaps we have finally conquered this beast!” only for it to return shortly afterward. No tweaking of the medications would tame it. Only douse me in a multitude of horrendous side effects.

It’s easy to let hope slip through your fingers like sand and turn your back on faith when medication stops. I have been at this fork in the road. However, when medication stops, the fight doesn’t stop. The fight must continue on. Epilepsy or whatever condition you’re currently up against, must not be the ruler of your life.

Epilepsy must not be the ruler of your life.

Yes there are difficult moments and days. Yes there are grueling moments and days. Even so, take these moments and days and allow it to be fuel to burn for the fight to continue on.

Every breath that I take, I vow to power another step and another step forward. As long as it takes, whatever it takes to put an end to this beast that has picked a fight with my brain and I.

When medication stops, the fight doesn’t stop. It only empowers me to go. Go on because I love life too much. I love my spouse too much. I love my family too much. I love my friends too much. I love it all too much to give up and give in to epilepsy.

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

4 Comments

  • Lainie Chait

    I love how you refer to it as a beast xxx
    Great article, keep on striving sista the AHA moment will come through the holistic treatment of your brain. Meds are only one thing. Great you have a great love in your life so there is no stress in that scenario. Makes a big difference!
    xxx

    • Tiffany Kairos

      HaHa, thanks Lainie 🙂 It is quite the beast. I’m pleased you enjoyed the article! Will most definitely do! I greatly believe in holistic treatment and I hope one day that meds will get the boot. Chris is a God-sent and I am so blessed to have him in my life and definitely this journey. 🙂

  • Rhonda

    Wow, I have only been on 2 AED’s (well, 3 if you want to separate valproic acid and divalproex sodium, oh, I guess 4 cuz there was one briefly right in the beginning) in my 17 years of epilepsy. They have all given/do give me negative side effects but at least they are tolerable and seizure activity is controlled (9 grand mals often spaced by years; countless myocloic jerks inbetween). (In general I have found that every 5 years I need to change them, though, cuz they quit working or give me untolerable side effects.) I HATE drugs as I’ve had many negative experiences with psychiatric drugs (thankfully off of them all) and also my AED gives me wild interactions with seemingly EVERYTHING – and I have a lot of other health problems that might be treatable if it wasn’t for the AED. But I’m EXTREMELY reluctant to be a guinea pig and try other AED’s. I wish I had the will to live that you do. I would be totally lost without my husband and my JESUS.

  • Nikki

    I just found your blog via twitter. I loved this article. It is an inspirational “keep moving” post, citing something I need to remember.
    I was diagnosed with epilepsy in September 2015. I went to Africa in 2014. After being home for 10 days I was n the ER and admitted to ICU for 8 days. I was bit by a mosquito that blessed me with he Chikungunya virus. After 5 days in an EMU, January 2016, it was discovered that the virus caused the epilepsy. I have a rare strain of the virus. I have asked around but have yet to find anyone with epilepsy or seizure disorder that was a result of any virus.
    Thank you!

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