Medication lamentations, in three parts:

Part two: Controlled substances and contingency plans:

https://www.epilepsy.com/volunteer/spreading-awareness/national-epilepsy-awareness-month

In the years since Clive and brain surgery, I have a new arsenal of seizure medications. A doctor friend saw me taking my evening dose, and incredulous, asked “those are all to keep you from seizing?”

“no, these 4 pills are to prevent a seizure, and this one is to keep me from feeling like there’s fluid trickling down my scalp”.

Through trial and error, we have found a combination that seems effective without knocking me on my can for the entire day. I belong to a group I never envisioned—epileptics, or those with seizure disorders. It doesn’t matter why I’m in the group, I now must follow the rules and guidelines for them. I mean us. Because you know what’s worse than side effects? Having a seizure.

Seizure medications can be notoriously tricky. They can have troublesome side effects—sleepiness, double vision, suicidal thoughts, coordination issues, irregular heartbeats, GI side effects, bleeding, bloating, rashes, delusions, headaches, weight gain—the list is seemingly endless. More than 20 different medications can be used, alone or in combination. Some require lab monitoring. Some of the oldest ones have narrow therapeutic windows, meaning that there is a small range in which the dose of the drug is effective, but not toxic. Too little, you still have seizures. Too much, the side effects become dangerous. They can cause liver damage, or cause the liver to metabolize other drugs more quickly, making them less effective. In the OB clinic, we would encounter this with women on birth control pills. Nobody wants to be taking any medication only to discover that it isn’t effective for its intended use, i.e. preventing pregnancy. To make matters worse, some seizure medications were also potentially linked with specific birth defects or other pregnancy complications. These women would get a double whammy—an unplanned pregnancy with need for extra monitoring and testing—and be unaware that they were pregnant until after it was too late to take extra folic acid (to prevent neural tube defects, like spina bifida) or terminate a pregnancy that they’d done everything they could not to have. I’m not going to pretend that I still recall which medications were troublesome and which were “safe”, when extra monitoring and testing was indicated and when it was not needed. When I was practicing, I always had to double check these. Honestly, it usually involved consults with high-risk pregnancy doctors and the woman’s neurologist.

Seizures are scary, for the person having them and for those around them. You can’t plan a seizure like you can plan a nap. You can take steps to decrease the likelihood of having a seizure, if you know what might trigger it. Triggers include sleep deprivation, alcohol use, late or missed medications, drug interactions, stress. Hormone changes. Modern life.

Seizures don’t always involve the entire body convulsing. November is epilepsy awareness month, and this site is worth your time: https://www.epilepsy.com/ Even if you stop reading my post now. And, PS, Give to the Max day. https://www.epilepsyfoundationmn.org/gtmd

Uncontrolled seizures that don’t stop are called status epilepticus. This is life-threatening. Treatment for these, or other new, unexplained seizures generally involves use of benzodiazepines, like lorazepam (Ativan) or diazepam (Valium). These can be addictive when used chronically—the Rolling Stones ”Mother’s little helper”. They are often used in emergency treatment, but not for long term seizure control.

Why some medications are deemed habit forming, requiring extra regulation, and some are not, is a complete mystery to me. The Drug Enforcement Administration, or DEA, tracks medications with potential for abuse, and lists them in five categories. This means that you need a special license to prescribe it (a DEA number-- https://www.dea.gov/drug-information/drug-scheduling if you’re truly bored. )

DEA uses Roman numerals, cuz they are fancy like that. They are ranked from most potential for abuse and least known medical uses (category I) to limited potential for abuse and high likelihood of medical benefits (category V). Some substances, such as marijuana, seem stuck in category I, even though they are now available over the counter in many states.

One of my medications, lacosamide, was prescribed after a breakthrough seizure. It is relatively new. In the world of medications, that means less than 20 years old.

Lacosamide is a category V scheduled medication. Most other category V medications are things that you generally only use when needed: cough medicine with codeine. anti-diarrhea medications.

Category IV medications include benzodiazepines, mother's little helpers listed above.

Category III: vicodin, other combination narcotics with relatively low doses of narcotic. Anabolic (bulk you up) steroids. Some older, sedating seizure medications include phenobarbital are category II or III, depending on the form. These are not first line or chronic treatment in most situations.

Category II: Adderall, fentanyl, methamphetamine

Category I: cocaine, LSD, heroin, marijuana (!)

Lacosamide does not have evidence to support it being addictive or habit forming. There is a 3 page handout that accompanies every refill I get, reminding me that it could be abused, but not to stop it suddenly. And don’t run out. But there are restrictions on when and how I can refill it. (This is from 2015, but is a good summary: https://www.epilepsy.com/stories/new-role-dea-epilepsy It also contains one of my favorite quotes on the subject:

“The idea that new antiepileptic drugs (AEDs) need to be scheduled because of abuse potential is almost comical to most epileptologists. AEDs have never been the subject of abuse and there are no case reports on the abuse of common AEDs”

I would love if someone smarter than me could investigate why lacosamide (Vimpat ) is still listed as a controlled substance and hopefully get it de-listed.

For fun, look at the NIH (National Institutes of Health) site for the mechanism of action of Valium vs Vimpat. How they do what they do. Is there overlap that would explain the abuse potential of Vimpat? The short answer is no.

Valium and other benzodiazepines work by binding to a chloride selective ion channel to enhance GABA, a neurotransmitter. It’s a feel good substance. Vimpat inhibits specific sodium channels. The only thing that these appear to have in common is that they are both components of table salt (sodium chloride).

Vimpat is used as a supplementary medication, when breakthrough seizures occur. The limited information I could find on why it is a controlled substance cited a study from 2008 that showed some people had “drug liking” and “euphoria” when taking it.

https://www.federalregister.gov/d/E9-4890/p-16

You know what causes good feelings and liking of the drug? Not having fucking seizures.

In the meantime, I have contingency plans for when I can’t get my medication when I need it because of these rules--my medication will run out in the middle of a trip, for example. It doesn’t matter if it’s a planned vacation or an emergency to help a family member. I’m grateful to have the knowledge of half lives (how long it takes for the medication to lose half its effectiveness and/or leave your body). I can go back to taking an extra pill of my original seizure medication, knowing that I’m going to need more sleep with that dose. I could do this every other day until I can get my dosage back in order. I can send a plan to my neurologist, and he can stamp it with his approval for emergencies. I know that when the pharmacy balks at giving me a 10 day emergency supply, I can tell them that my mail order is on the way. I’m not selling Vimpat on the street or snorting it or shooting up or whatever it is that would be an abuse of the medication.

What about those who don’t know to advocate for themselves? Or struggle to do so?

Thanks for listening to my rant. Lots of links and science.

Each year the Eden Prairie High School girls' soccer team hosts a community day and gives back to something meaningful for them.

Last year the team chose to raise awareness for epilepsy, in honor of a club soccer player who died from complications of her seizure disorder.

I had nothing to do with their choice. It resonated with me more than I expected. I was grateful to connect with the Epilepsy Foundation of MN.