If you’re living with Ataxia—or know someone who is—you’ve probably heard some buzz about new treatments on the horizon. One of the biggest headlines lately is the progress of Troriluzole, a new drug from Biohaven that is currently under FDA priority review for Spinocerebellar Ataxia (SCA). (Read the official news release here.)
Why am I writing about it?
Because I’m not just following the news—I’m on Troriluzole myself as part of Biohaven’s Early Access Program (EAP). If you’re curious about what that process is really like—not just the clinical bullet points but the daily realities—this update is for you.
What is Troriluzole and Why the Hype?
Troriluzole is being studied as a potential disease-modifying therapy for SCA—a progressive and often frustrating neurological disorder that impacts balance, coordination, and more. Unlike most medications, which focus solely on symptom relief, Troriluzole aims to target the underlying glutamate system in the brain, potentially slowing disease progression. It could be a true game-changer.
That’s why many of us are watching closely as Biohaven seeks FDA approval. This is also why the EAP, which allows certain patients to start the drug before it is widely available, has been such a big deal.
My Journey: From Clinical Trial to EAP
I have a bit of history with this drug. Back in California, I participated in the original clinical trial for Troriluzole. However, after an injury and a move to Colorado, I had to drop out—a huge letdown, when you’re hoping for something that could change the course of your condition.
After all that, I finally got into the Early Access Program. Honestly, it does feel like getting another shot. But if you live with Ataxia, you know the drill—every new treatment comes with just as many questions as it does hope.
The First Month: A Quick Burst, Then…
The EAP protocol starts you on a lower dose for the first month. Within a few days, I noticed a huge burst of energy, like drinking 20 cups of coffee, but without the shakes or the crash. I felt sharper, more awake, and oddly optimistic. Unfortunately, the effect faded after a few days, and I found myself back to my “normal” baseline—not bad, just not supercharged.
Up to the Regular Dose: The Rollercoaster Begins
Things shifted once I transitioned to the full dose about a week and a half ago. Suddenly, some old, unpleasant sensations came back—specifically, the feeling of head tremors I’d dealt with years ago, along with a tight, jittery energy that settled in my stomach and shoulders.
If you’ve ever ridden a rollercoaster, you know that split second at the very top, right before you drop? That’s how my body has felt every day since moving to the higher dose. The tension is real—my neck feels braced, my muscles tight, and there’s a nervous “ball” of energy that just sits there. It’s not pain exactly, but a kind of relentless anticipation—waiting for the tremors to hit, even if they don’t.
The silver lining? Each day, the intensity drops a little. So far, it’s moving in the right direction, but I can’t pretend it isn’t distracting.
The Dilemma: Progress vs. Side Effects
This is the hardest part of trying any new medication for a progressive condition: you’re constantly weighing the potential for long-term benefit against the immediate discomfort. Do I stick it out, hoping these side effects are temporary and that the drug will help slow the progression of my Ataxia? Or do I decide that the cost to my quality of life is too high, even if the medication works “behind the scenes” like my doctor said it would?
The answer isn’t clear yet. For now, I’ll stick with it for a couple more weeks, keep tracking what happens, and be honest about the ups and downs. The tricky part is my doctor said this medication is supposed to work “in the background”—so it’s not like I’ll wake up one day and know it’s helping. I’m not here to hype things up or sugarcoat the side effects; I want to be honest about what I’m experiencing and hear what others have noticed.
The Importance of Sharing Stories
Whether you’re already taking Troriluzole, considering it, or following the conversation about new treatments for Ataxia, I hope sharing my experience helps fill in some gaps. There’s not a lot of real-world information out there right now, and we all know how isolating that can feel.
If you have your own story, questions, or concerns about Troriluzole or anything else related to Ataxia, please share in the comments, send me an email, or join our community. The more we talk honestly about what’s happening in our day-to-day lives, the more we help each other navigate all the unknowns. That’s how we build real awareness and support—by showing up and sharing the hard stuff as well as the hopeful.
Thanks for reading and following along. I’ll keep posting updates as I learn more.
