The long, winding journey to my narcolepsy and POTS diagnoses

“Does my Kermit the Frog shirt scream depression?” “Is my hair braided in an anxious way?” “Is my personality too meek?”

My thoughts circled dreadfully before a doctor’s appointment. After years of dead-end appointments, I felt like I was the problem.

As part of a six-week outpatient program in March 2024, I had to see a psychiatrist. I’d met many psychiatrists before that and was prepared for the same degrading routine.

I’d spent years seeking help for the symptoms I was experiencing: I had difficulty walking and sometimes couldn’t move my entire body; my eyes would close, and I’d be unable to respond to the people around me; I was so exhausted that it was impossible to keep up with daily life.

But I kept getting the same answer: My symptoms stemmed from depression, anxiety, conversion disorder, panic disorder, etc. I’d spent years undergoing intensive therapy and had tried a long list of medications I could barely keep track of, yet I still had no relief. In many ways, I was worse.

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Shortly into my appointment, I could tell this psychiatrist was different. I felt like a person, not just a patient. She was curious about finding solutions rather than being dismissive. She thought a beta-blocker could help me, and I felt hopeful for the first time in a while.

The beta-blocker turned out to be the first medicine that significantly helped me. While I was still dealing with a lot of mysterious symptoms, it offered some relief. I often felt stuck in a state of adrenaline and struggled to breathe, and my episodes of paralysis were often accompanied by a feeling of terror. The drug helped ease my terror and symptoms of high adrenaline.

Unfortunately, after completing the outpatient program, I lost access to the psychiatrist who had prescribed the medication. When it was time for a refill, I set up an appointment with a primary care provider.

After giving myself a pep talk in the car, I sat in the waiting room preparing my story for the doctor. Given the sense of calm I experienced on the beta-blocker, I now knew for certain that panic was not to blame for my episodes of paralysis. My mind moved slowly, and even simple tasks like making a grocery list often felt like an advanced calculus exam I wasn’t prepared for. Even though the beta-blocker was helping, something was still seriously wrong, and I was desperate for answers.

During my appointment, my blood pressure was a bit low, so I was denied a refill of the beta-blocker. The doctor prescribed an anti-anxiety medication I had previously tried, as well as a new antidepressant. I felt defeated.

I kept looking for doctors who would understand. But after months of blood work and meeting with specialists, I still had nothing.

Finally, the missing pieces click into place

That’s when I saw a random post online explaining cataplexy, something I’d never heard of. The condition involves sudden, brief muscle weakness that’s triggered by strong emotions. The post described falling to the floor with laughter as an example. Immediately, a movie reel of memories played in my head; I’d experienced this exact issue for as long as I could remember. My heart raced when I read that cataplexy is often associated with narcolepsy.

That prompted me to ask my new primary care provider for a sleep study, and in March 2025, the study confirmed my diagnosis: type 1 narcolepsy, also known as narcolepsy with cataplexy.

I began treatment with Xyrem (sodium oxybate), and my sleep paralysis, disrupted nighttime sleep, and cataplexy nearly disappeared. However, it soon became clear that there was still a missing piece of the puzzle.

Despite the narcolepsy treatment, I still had many concerning symptoms, including debilitating fatigue, a violently racing heart while inactive, and blood pooling in my legs that turned them purple. I collected heart rate data for my doctor using a smartwatch and watched my heart rate climb from 80 to over 140 beats per minute just from standing up.

I met with my doctor, who diagnosed me with postural orthostatic tachycardia syndrome (POTS), an autonomic nervous system disorder. It can cause many disruptive symptoms, including extreme fatigue, adrenaline dumps, and blood pooling. POTS, my doctor explained, is often treated with a beta-blocker.

My Kermit shirt, braided hair, and personality weren’t the problem. The problems were type 1 narcolepsy and POTS.

Note: Narcolepsy 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 another 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 Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.