Senate Bill 3 is Personal

Let me tell you about Medial Temporal Lobe Epilepsy.

The Texas Legislature’s attempted ban on hemp products – SB3 – would have negatively affected tens of thousands of Texans who, like me, live with a form of epilepsy called Medial Temporal Lobe Epilepsy (MTLE). In this post, I describe what the condition is and my difficult experiences with it. In a later post, I’ll discuss hemp policy and its effects on MTLErs. For this post:

• MTLE is a unique form of epilepsy that is not easily diagnosed.
• The condition is delayed-onset and typically doesn’t manifest until adulthood. 
• I lived with it for six years before my diagnosis.
• Without a diagnosis, I had no access to medication that would have prevented a massive seizure I suffered in 2016 that finally confirmed that I had MTLE. 

My belief about SB3, which I will cover in more detail later, is that an outright prohibition on consumable hemp products cuts off a source of relief for Texans with MTLE with no clear policy benefits. These products are affordable and accessible. They should remain that way.

Medial Temporal Lobe Epilepsy (“MTLE”)

Let me tell you about Medial Temporal Lobe Epilepsy (“MTLE”). Most people think of tonic-clonic seizures when they think of epilepsy – full-body convulsions where someone collapses, loses consciousness, and shakes violently. They are common, unmistakable, and easily diagnosed. MTLE is different. MTLE is a type of “focal” epilepsy with seizures that do not involve convulsions. MTLE seizures are entirely internal and are much harder to recognize and diagnose.

MTLE seizures originate in the medial temporal lobe, deep in the brain where the hippocampus and amygdala regulate human memory and emotion. You’re not consciously aware of these structures, but you can’t function without them. They are like the brain’s computer operating system working silently in the background.

An MTLE seizure begins when neuron activity suddenly bursts into a frenzy, first within the hippocampus, then spreading to the amygdala. The frenzied neuron burst enters the hippocampus affecting your ability to regulate memory – how you link past experiences with present reality. The neuron burst then reaches the amygdala – the brain’s emotional command center – which translates emotions into physical sensation, like the awe you feel holding a newborn baby.

The result is that you can’t separate memory of past events with present reality or distinguish between physical sensations caused by emotions. Initially, a profound sense of déjà vu takes over like a tidal wave. The wave hits, you sink in. You’re floating between past memories and the present and picking up long forgotten conversations. This part of the experience feels euphoric.

Then that tidal wave pushes you through a trap door into darkness. Your nervous system detects the neuron surge and fights back with a full body response. Euphoria turns to dread. Your heart rate spikes. Your gut churns. You know something is happening but you can’t stop it.

People around you probably don’t notice what’s happening. But you can’t speak even if you’re trying to say something. Your brain is unable to instruct your vocal cords which words to say. Words scatter as they come out. 

The seizure likely ends within a minute, though it feels longer because you have no sense of time. Its aftermath isn’t any better. The initial burst of euphoria the seizure triggered gives way to emotional and physical exhaustion. You’re stuck with dread and hopelessness for the rest of the day – and you may have more seizures to come. 

MTLE is a delayed-onset epilepsy that typically begins after age 20. Its causes aren’t fully understood. Prescription meds are available to manage MTLE, but they aren’t available over the counter. For the uninsured, MTLE treatment can be cost prohibitive – unless you have access to the consumable hemp products that SB3 would have banned.

My MTLE diagnosis took six years. Many Texans never diagnose it.

I’ve dealt with MTLE for at over 15 years. It probably started when I was 26 or 27. By 30, the seizures were frequent — sometimes daily – and worsened under the pressure of life as a young litigation associate. Stress made the seizures hard to manage.

I had seizures during depositions, court prep, even on a client’s private jet. When I switched firms, colleagues held an impromptu happy hour and I had a seizure as a senior partner toasted me. The seizures – entirely undiagnosed – caused me to lose confidence in myself.

I could not find a physician who could successfully diagnose the MTLE. Two psychiatrists failed to diagnose MTLE despite describing the déjà vu episodes, which should have immediately resulted in an epilepsy diagnosis and a referral to a neurologist. Instead, I was misdiagnosed with anxiety and told myself I could power through.

Lindsay and I got married in 2016. Our wedding in New Orleans was a real party but also exhausting. A week of music, celebration, alcohol, and hardly any restorative sleep. When we returned to Austin, I hit the gym to sweat it out. During a set of power cleans, the déjà vu sensation hit. I told myself I could power through the set. I couldn’t. I blacked out with the bar racked on my shoulders.

That’s when I had my first and only tonic-clonic seizure. On rare occasions, a focal seizure can escalate to tonic-clonic under extreme stress. I collapsed under the bar, seized for about a minute, then remained unconscious for about ten more minutes. When I finally came out of the fog, I was bruised, shredded, and shaken.

But I finally had an answer to what ailed me – I had epilepsy. So while the seizure itself was terrifying, the relief that followed was worth it. An MRI confirmed MTLE. With the right medication – covered by health insurance – I haven’t had a tonic-clonic seizure since.

I am lucky to have the MTLE diagnosis and access to prescription meds that manage it. Thousands of Texans are not. If these Texans lose access to consumable hemp products, they lose their ability to manage MTLE.

Senate Bill 3 is personal.