control

And, somehow, we always end up back here talking about epilepsy. It’s pretty funny because, at the end of the day, it’s what I think about. It’s the thing that crosses my mind because it limits me. I’ve been so stuck between my opinions and those of my doctors. I literally can’t remember the last time I wasn’t transitioning on and off of medications.

When I went to the doctor over spring break, my doctor prescribed me Depakote, which is the medication that required me to start the ketogenic diet. My doctor had told me that Depakote is very unsafe for pregnancy. He asked me quickly, and the look in his eyes told me he was so confident that the medication would work for me. He looked me in the eye and said, “I think this might be it.” It lit me up and I accepted, against my better judgement.

I tried it and was on my way up to a regular dosage when I decided that I wanted to get off of it. I had doubts from the minute I left with the prescription in hand. The pregnancy thing is what got me – I know it probably sounds ridiculous, but if you think about it, staying on Depakote would mean that it can’t be a permanent solution for me. I would like to have a family, so I would potentially be changing medications in 10 years, and then potentially going back on it. I have been desperate to find something that works for me, long term. I can’t deal with the disappointment of starting over when I’m older and have more responsibilities. Right now, in my controlled environment, is the time to figure this out. God willing, I will.

Keppra has always worked for me. It’s been proven on the testing that it works for me, and it has protected me for a year now. However, it made me insanely depressed, to the point of suicidal thoughts, which is so frustrating. Brains are so odd. The science-y part of my brain loved it, but the thinking part, not so much. My doctors wanted to switch me to Lamictal, which is something prescribed to people with Bipolar Disorder. Three days after I weaned completely off of Keppra, I had my third seizure. I am now so afraid of ever going off of it. I trust it with everything in me, and I don’t know if I could deal with the anxiety of trying to transition to something else.

Most recently, my doctors have suggested more medications. At my appointment last week, I was prescribed a new medication after saying I didn’t want it. Three times.

I have another doctor’s appointment coming up in a few days and I’m trying to teach myself to say no. I’m currently on a good balance of Keppra and Lamictal. I’m comfortable and I feel safe. I’m not sure why every doctor has been trying to change that. I know that I have brilliant doctors and they’re much smarter than me, but I know my body and I know what I’ve been through. I am comfortable on my current dosages and I’m sick of being persuaded of things that I don’t want. The way I see it, this combination is working and I’m okay. Until I’m no longer stable, I’m not interested in any change. I wouldn’t wish epilepsy on anyone, but sometimes I wish I had a doctor who had it. If I had someone treating me who understood, I think things would be a lot different.

Here’s to hoping I can hold my own next week.

Take everything with a grain of salt and stick to your gut. The things in your life are yours. You know yourself best.

6 thoughts on “control

Add yours

  1. You have to be your own protector, so you have to speak up at your appointments. You have to tell them how you really feel so they know what you really want. I’m not a Dr. , but maybe they are worried about the suicidal thoughts and have to come up with other options for that!! If you told the Dr you had them, they can’t ignore that either!! Good luck at your next appt. and speak up to let them know how you really feel and maybe between both of you, you can come up with a better solution!!

    Liked by 1 person

  2. I hope you held your own! I was on a heart medication for 12 years and the doctors wanted to try me on new things. I had side effects to those and went back to the one they wanted to get me off – It worked for me!! Go with what you feel. You know your body.

    Liked by 1 person

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