MG patients must be the final arbiters of their treatment plan
I won't make decisions about my care until I have all the information
When I was 8, I developed epilepsy and doctors prescribed me phenobarbital. For 24 years, I lived unaware of the drug’s side effects. My childhood and adolescence would have been very different without it, but I’m alive today thanks to the medication.
Five years ago I was diagnosed with myasthenia gravis (MG). My experiences with phenobarbital informed the development of my MG treatment plan.
Before I go any further, I’ll mention that MG is a snowflake disease. Just as it affects each patient differently, treatment may also be different for everyone. I don’t have any medical training, and what I share is unique to me. I don’t recommend any treatments or medications.
Phenobarbital is a barbiturate. According to the Cleveland Clinic, one of its side effects is drowsiness. For 24 years, this side effect greatly affected my life.
During high school, I was famous for my tardiness and spent hours in the dean of discipline’s office. The situation didn’t improve in college, and I learned to avoid, whenever possible, classes that began before 10 a.m. Weekends were no better, as I frequently slept all of Saturday and Sunday. I joked that I was preparing for life either as one of the idle rich or as a resident of a senior living home. I joked because I was ashamed and embarrassed.
As an adult, I understand that sometimes communication is silent or implied. Words can have multiple meanings. We send messages and issue judgments with subtlety. As I lived with phenobarbital’s side effects, I frequently encountered this phenomenon as people offered me solutions.
Did I lack self-discipline? Was I lazy or so self-centered that I thought deadlines didn’t apply to me? Were my friends so unimportant that I’d not show up when promised? Solutions were obvious! Go to bed earlier, exercise more, don’t drink caffeine, avoid chocolate. I heard all of these, and when they didn’t work, I concluded that it was my fault.
That stuck with me for 24 years. Then, when I stopped taking phenobarbital, my life changed. I no longer walked around in a fog and began waking at 5:30 every morning. I had energy and could keep pace with the rest of the world. It was as if a curtain rose and I could clearly see the show.
I stopped the drug against the advice of my neurosurgeon. I don’t recommend this path. It triggered a medical crisis for me that could’ve been deadly. Yet it was a risk I was willing to take, and thank God it worked out.
As a patient, I lead my treatment team
I spoke about this experience with some respected neurosurgeons who’d never treated me. They were surprised that, given the many treatment options now available for epilepsy, I was on a drug first prescribed in 1912. I began to wonder if some of my struggles weren’t inevitable. Rehashing the past was pointless, but I was determined to never end up in a similar situation. Twenty-five years passed, and then MG entered my life.
Since my diagnosis, I’ve insisted that any treatment plan include input from me, my family, and my neurosurgeon. Before taking a medication, I insist on time to investigate the drug’s efficacy and potential physical and emotional side effects. I do something most people don’t: I read all the paperwork the pharmaceutical companies issue about their products. Only when I have all this information will I make my decision.
Sometimes I make the wrong decision, and my team and I have to go back to the drawing board. I always remember that while phenobarbital caused me many problems, it also kept me alive. I don’t want to be blind to the possibility that effective MG treatment might involve another such trade-off.
As the King James Version of 1 Corinthians 13:11 says, “When I was a child, I spake as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things.” I’m no longer a child. I lead my treatment team and must be the final arbiter. Never again will a medication define me.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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