“How did you get such late-onset epilepsy?” my new neurologist asked me in a thick Russian accent during our first appointment.
“I did too much methamphetamine,“ I answered honestly.
“Meth-am-phet-a-mine,” she said painfully slowly as she wrote it down.
“But I’m sober now …” I stuttered. “Over 12 years!” I feigned a smile.
“Congratulations,” she said coldly.
I didn’t really feel the enthusiasm or warmth I’d hoped for, but I just said, “Thank you,” anyway. Maybe it was just a cultural thing, I told myself. Let’s not take it personally.
The appointment only got more awkward as we went on.
“Is this from your orthopedic surgery?” she asked, pointing to a hairline scar on my wrist.
“No, that’s where I slit my wrists with a box cutter in London.”
A pregnant silence followed. Unfortunately, we’d turn out to be in touch a lot.
I proceeded to have four complex partial seizures in a row in the following week and a half. They were triggered by stress and (believe it or not) the fluorescent lighting in the supermarket. I already had a vagus nerve stimulator in my chest/neck that shot electricity into my brain, and I was taking three heavy anti-convulsant medications.
When I called the doctor to see what else we could do, she said, “I think you should try Briviact. It is one of the few meds you have not tried.”
“Yeah, I looked it up and it can cause depression, suicidal ideation, and psychosis.”
“They all have that warning,” she clucked.
“I understand that, but if there’s one percent of patients who will have those side effects, it will be me. I’ve been at this game for 20 years. I’ve never had psychosis, and although it sounds interesting, I’d sort of like to keep it that way. I’m not sure you understand my psychiatric history.”
“I understand,” she said. “I know you were in the hospital. But we must try something.”
“So you’ll pay the five thousand dollars for my eight-day stay at Las Encinas psych ward when I lose my mind on this medication and walk around in grippie socks doing puzzless?”
“Well, of course not. But we must try something,”
More doctors should understand the importance of mental health
This is where I don’t think my doctors take mental illness as seriously as they should. A few years ago, I tried a new medication that, again, I had been hesitant about. As soon as I got up to 200 mg, I lost my mind and calmly and rather methodically started making a plan to kill myself. It was like a switch had been flipped. It was terrifying.
“250 is the sweet spot, I’ve heard,” my old neurologist said.
“That’s nice. I’ll be dead at 250,“ I said bluntly.
Anti-epileptic drugs are notoriously brutal, with many unwanted psychiatric and physical side effects. Many people with epilepsy also experience depression before their first seizure. Epilepsy is also known to have an effect on mood and increase depression. That’s before you add on the gnarly medications. It’s a tricky situation.
I saw doctors on Reddit discussing that the current requirements for adult neurology include at least one month in clinical psychiatry.
ONE MONTH!!! Like, lady, you are playing with my brain on a single month of psychiatric training?!! It takes longer to learn how to crochet!
I’m not the only one who thinks this is insufficient. In an article in JAMA Neurology, the authors stated, “The current model of psychiatry training does not meet the needs of neurology trainees with the majority of neurology residency graduates underprepared for providing psychiatric care in routine neurologic practice.” You don’t say!!!
This has been my experience as I’ve battled a seizure disorder for 20 years. I understand that my neurologist’s primary goal is to control my seizures, but surely my quality of life counts for something, too. If the medication destroys my memory and makes me sleep for 14 hours a day, what’s the point?
It is also no secret that many doctors get payments or gifts from pharmaceutical companies to encourage them to prescribe particular medications. So excuse me if I’m a little hesitant to buy what you’re selling and if I do my own independent research.
Anytime I see pharmaceutical reps come into the neurologist’s offices in tight, speckled grey pants, shiny, black oxfords, and perfectly pressed white button-downs, my eyes narrow and I immaturely hiss at them. They make good money peddling drugs—many which had made me really suicidal or ill. So please go away with your blindingly white newscaster smiles and your deceitful pamphlets.
I am the expert on my own experiences
As somebody in recovery, I know my body and biochemistry are different. I get wildly high off of crème-filled donuts (and, no, I’m not diabetic). My neurologist prescribed me a migraine medications, as seizures and headaches are tight buddies, and I was hysterically laughing after the first dose, and then crying after the next two. I also had two seizures.
“I have prescribed Imitrex to hundreds of epileptic patients and none had seizures,” my doctor said defensively.
Good for them! How many of them had my mental illness or history of substance abuse?
While it is thankfully now mandated that a doctor receive eight hours of training in substance abuse if they are going to prescribe controlled medications, that doesn’t seem sufficient. After all, it takes nine months at the very least to become a hair stylist. I’d like my doctor to be better educated in my unique brain chemistry than my stylist is in how to do a cool Stevie Nicks shag. Jesus.
I had to become my own medical advocate
Every single neurologist I’ve had has been completely puzzled and frustrated by my poor response to controlled anti-convulsants. And after having many bad experiences, I’ve lost trust and learned to be my own advocate. I’m not saying become Dr. Google or read every review on Reddit, but we have to take some initiative. Here are my suggestions:
- Do a little research about the drugs your doctor is proposing. What are the common side effects? What are the really weird side effects (so you can recognize them if you win the side effect lottery)?
- Know what family of drugs don’t agree with you, and check every new prescription to see if it’s in that family.
- Trust your gut. It can be hard to speak up to doctors, but it’s vital that we advocate for ourselves.
In the end, I might not have gone to medical school, but nobody knows my body better than me, especially after 14 epilepsy medications, six rehabs, and four psych wards. Don’t try to be the expert, but don’t give your power away.