If only we lived in a perfect world without mistakes or errors. If only people took the time to listen or reevaluate their decisions. But this is not the world we live in and none of us are without error. What is important is learning from past mistakes and educating yourself about warning signs and how to prevent them if possible.
When I first got diagnosed with Epilepsy in 2011 at the age of 19 I had already had about 3-4 tonic-clonic seizures within a month. Some I told people about, some I suffered in silence wishing they would go away. There might of even been more but you see, this is when my overdose happened. Part of my life is nothing but bits and pieces. Part of my life I struggle to recall and perhaps also one of the most important parts because this is how it all began. As years went on, more seizures occurred, and side effects from medication began taking their toll, it became even hard to recall the event that occurred that year. Excuse me if numbers and figures are not exact relating to dosages.
I had started a new job that I loved, got into a new relationship, connected with old friends, looking into starting college – things were going good; aside from being recently diagnosed with Epilepsy. For me, that was the elephant in the room. I should have been happy with myself and with life, but truthfully I was not. I was started on Keppra after my first seizure or two at a low dose of 500mg twice a day – this is usually the standard starting dose. I listened to the lecture of how I should not drink, reconsider pregnancy, and be careful in my everyday life. I should not drive, I should take breaks when needed, and I should go easy on myself. Most importantly I should NEVER miss a dose. And I never did…perhaps that was the problem.
I obeyed my neurologist word for word. Avoided grapefruit and cough syrup. Took my medication on time, but that did not always stop the seizures. Every two weeks I went back and he increased my dose. Higher and higher it went. I do not remember what my last dose was from that time period but I remember it being a pill and a half in the morning and a pill and a half at night. At this point something did not feel right. My seizures were sort of under control, but something else was going on.
My job became a chore that I dreaded. I could no longer remember how to make drinks or where things were in the café – mind you I have been here for a little while now. My coworkers did not want to work with me because I took “too long” and they felt like I was a responsibility. They started calling me the “seizure girl” and notice I had a little tremor. Eventually my name became nonexistent, I became “seizure girl.” I would forget constantly when I had to go in or what time my shift started. My manger became curious what was going on and I would simply reply “I do not know, but don’t worry, I’m fine.”
Being awake became a task. I was always so tired and wanted to nap. It was hard to learn new things – probably due to the memory lapses and generally feeling “slow” – and I began giving up on going to college. How was I going to manage school when I could not manage my life? Remembering the previous day started to become a task. Have you ever saw 50 First Dates? That was basically my life. My boyfriend would have to leave me notes or else I would not remember he had left for work. He would leave me notes of what we did or talked about the night before. He would leave me notes about my work schedule. Slowly I began not to remember conversations or places I have been and it began to scare me.
What was going on? Was I dying? Did I have a brain tumor? I became frustrated and lashing out at people. I did not want to leave the house or go out in public. Coworkers began to tease me more as it got worse and I would try my best to hold it in. Simply being alive felt like a chore. I was fed up with having to do daily task such as shower or eat. I had no will to function. I had no will to try and socialize. Eventually everyone started to notice. I became a zombie. My memory was nonexistent. I could not recall names at times or words I wanted to say. I barely remembered to take my pills. One day I decided to look up the side effects in detail:
“Max recommended dose: 3000mg/day. Side effects: SUICIDAL THOUGHTS, aggression, agitation, anxiety, apathy, depersonalization, depression, dizziness, hostility, irritability, personality disorder, weakness, drowsiness, dyskinesia, fatigue, coordination difficulties, STEVEN-JOHNSON SYNDROME, TOXIC EPIDERMAL NECROLYSIS” (Davis’s Drug Guide – side note: I capitalized life-threatening side effects)
Alright. So the lack of desire for daily functions and constant sleep made sense, but what about my memory? What about this tremor? What about not being able to find the words I want to use? I am 19 year old, I should not be like this. I was an honor student. I was in advance placement classes. What was wrong with me? I started getting anxious and paranoid at work. I did not want to be there. I no longer cared about work or being in a relationship. I did not care about going back to school. I honestly did not care what happened to me. Then one day I woke up – suddenly I cared. Frantically, I called my neurologist and demanded a blood test – they asked me if I had any recent seizures and they said “your dose is fine then, it is the side effects.” Paranoid still, I moved onto the next in line, my primary care physician and he gladly agreed to do a blood test to check my levels.
For the next few days I anxiously awaited that phone call. Was this me or the medication? Am I just crazy? Is all of this a dream? I was constantly checking, just waiting for the call…then finally it came. The conversation went something like this:
“Is this __________”
“We have some news for you, you blood draws came back”
“Cut your dose in half immediately, your Keppra levels are too high. Something is not right and we will notify your neurologist right away. Please do not continue your prescribed dose and make an appointment as soon as possible. If things worsen, come in right away, this is atypical.”
For a minute my world was spinning…what just happened? I was not understanding. What do you mean my levels were too high, my neurologist knows best…so I thought. “It is basically an overdose – it has not made its way to your respiratory functioning yet but if you keep take your prescribed dose it could progress.” All I remember is replying with “oh.” I did not know how to feel. So what do I do? Cut my dose and endure seizures repeatedly? Do I deal with this until I can speak to my specialist and hope I do not end up in the hospital? Now what.
At that point it was too late to cut my dose I already took my pm pill and then next day I still took my usual dose…what did that nurse know? She was not a specialist. So what if something happened, I am sure the hospital could fix it…right? Or maybe this medication was doing everyone a favor. Maybe I should keep this dose. I felt like I was a burden to everyone around me. Maybe this was my fate. Something changed the next day and I immediately called my neurologist, but things were different.. this I do recall:
“Can I speak to Dr._____”
“Sure what is your name? Hold on.” (few minutes had pass) “Hello? Actually…on second thought he does not want to take the call at the moment but you can speak to me. He knows this is about your levels.”
“..Okay…so what do I do?
“What do you mean?”
“What do I do? Should I lower my dose?”
“I cannot tell you what to do, I am not your prescriber.”
“Can I talk to my prescriber”
“He does not want to take your call today.”
After this game of back and forth and her telling me she cannot help I hung up. So NOW what? I closed my eyes and swallowed my next prescribed dose and called the office again. Same nurse answered I presume. She had the same story. I tried to book an appointment but he was “too busy.” I then purposely left voicemails for appointments and callbacks – nothing. They wiped their hands clean of me. So really, now what? What was I supposed to do? I sat down and thought about it…is this really my fate? Should I listen to my primary care physician? What do I do? I sat down and planned out how to wean myself. Against medical advice, I weaned myself off of Keppra. I also had to look for a new neurologist. And luckily, it did not end worse.
About Keppra Toxicity
Now I can only speak from personal experience and I can tell you what websites say. Symptoms according to websites include: extreme drowsiness, agitation, aggression, unconsciousness, difficulty breathing, shallow breathing, and coma. I did not have an extreme case nor did it last long enough to get worse. Symptoms from other people include: mobility changes, stuttering, changes in speech, changes in memory, and increasing difficulty with processing information. I was never told how high exactly my blood levels were but it was enough to affect me. I was a small girl at the time, 5’1 and barely 100lbs. Dosages are different for everyone as well as how the medication may affect them. My side effects that told me something was off: severe memory problems and trouble communicating. I cannot definitely say the tremor or issues with learning was completely related to the high Keppra dose. My mood definitely got worse but I cannot say for sure again if that was toxicity or because everything happening at once. I also developed a little bit of a rash as well as the dose increased. It is hard with antiepileptic drugs (AEDs) because a lot of what are usually toxicity signs for other medications are what AEDs usually cause. If you EVER feel like something does not feel right or something is off, do NOT hesitate to phone your neurologist or primary care physician. If they do not listen to your request, do not hesitate to ask for a second opinion or go elsewhere. Always advocate for yourself if something does not feel appropriate.
Do you have any experience with Keppra Toxicity? Leave your story below!