The idea for my blog this month was spurred by a recent, long conversation with a friend. He is a single father, and his 12-year-old son began experiencing what appeared to be seizures. However, due to a previously diagnosed tic disorder in the child's medical history, these events were quickly categorized and documented as psychogenic non-epileptic seizures (PNES), a diagnosis often associated with mental health conditions. Despite significant evidence suggesting other potential causes, the father has faced considerable difficulty finding a medical provider willing to conduct a comprehensive physical assessment to rule out any underlying medical issues. Instead, the focus has remained on the mental health diagnosis, which the father feels may be premature, especially considering the child's age and the complexity of the symptoms.

This conversation brought back many personal frustrations related to my own medical history. First, I want to say that I absolutely adore my current primary care physician and medical team. They are thorough, compassionate, and professional. However, I have spent over fifteen years navigating obstacles related to misdiagnoses and delayed diagnoses before meeting my current providers.

Growing Up with Medical Care

Being raised by an OBGYN, I was never afraid to visit the doctor with any health concerns. I also grew up in the 1990s during the "Her Heart" campaign, which raised awareness about heart disease in women. The commercials highlighted how women often ignore symptoms or delay seeking medical attention, which can lead to serious consequences. The campaign encouraged women to prioritize their health and seek help sooner. This message resonated with me deeply, as I’ve always been vigilant about addressing any concerning symptoms related to my health.

Without diving into the specifics of my entire health history, I’ll say that I’ve had my share of medical issues over the years that were difficult to diagnose. For example, I experienced a series of vertigo episodes, but the cause was never immediately clear. However, the most significant example started fifteen years ago.

The Beginning of Unexplained Symptoms

It all began when I started waking up suddenly in the middle of the night with a racing heart, a sense of impending doom, chest pain, and overwhelming adrenaline. This was often followed by insomnia, and it was completely unpredictable. Some nights it would happen, and other times months would pass without any episodes.

Over the years, I saw at least a dozen healthcare providers—including ER physicians, primary care doctors, cardiologists, neurologists, physician assistants, and nurse practitioners—but early on, I was told these episodes were driven by anxiety or panic disorder. This diagnosis never fully made sense to me. I have no shame about having a mental health diagnosis, but in this case, something about it didn’t sit right—it felt physical.

The Stigma of a Mental Health Diagnosis

Once panic disorder was written in my medical chart, it followed me everywhere. It tainted how every new healthcare provider approached my case—often disregarding my symptoms as anxiety-driven. The fact that my heart monitor tests never captured an "episode" (as I called them) didn’t help. Years went by, and I reluctantly accepted the panic disorder diagnosis, even though it never quite felt right.

A Turning Point in My Medical Journey

About two years ago, I visited my primary care physician for fatigue and saw her physician’s assistant. She made a statement to me that stuck with me: “With someone like you, with a chart as complex as yours, I’m sure you don’t often feel heard, so make sure you keep talking.” She then made a medication change that did help with my fatigue.

While I understand she intended to be supportive, all I could think was, What in the world does my chart say about me? All I’ve ever done is seek medical care when necessary—now, I’m being labeled as a “complex” case? That comment, while meant to be reassuring, actually left me feeling more confused and shamed.

The Long-Awaited Diagnosis

It wasn’t until this year that I finally got an answer after years of searching. During a telehealth appointment with my sleep apnea doctor, I mentioned the episodes I’d been experiencing and how they had improved significantly after starting treatment for sleep apnea. I had discussed these symptoms with other sleep specialists in the past, but they had all concluded—without exception—that anxiety was the cause. I wasn’t expecting anything new.

But this sleep specialist said, without hesitation and with complete confidence, “You’re experiencing sympathetic overdrive caused by sleep apnea.” He explained that this is a common symptom of sleep apnea and has nothing to do with panic disorder.

Sympathetic overdrive occurs when the body’s "fight or flight" response is activated during episodes of disrupted breathing. In obstructive sleep apnea, the body experiences temporary drops in oxygen levels, which triggers the sympathetic nervous system. This increases heart rate, blood pressure, and stress hormone levels as the body tries to compensate for the lack of oxygen.

The doctor explained that symptoms of sympathetic overdrive include increased heart rate (tachycardia), night sweats, anxiety, difficulty breathing, and sleep disturbances. People may also experience moments of intense fear, including chest tightness.

A Sense of Vindication and Disappointment

I am incredibly grateful for this doctor. Finally, after fifteen years, I have a diagnosis that makes sense. I felt a sense of vindication, but also a deep sense of disappointment in the medical system and the struggle I endured to get here. My intuition that there was a physical cause was correct all along.

The Need for Change

Something needs to change in how we approach patient care. Patients must be heard, and both medical and mental health providers must collaborate more effectively to ensure comprehensive care. It is essential for patients to advocate for themselves, but it is equally important for healthcare providers to recognize that someone can have both physical and mental health issues.

I’m concerned that patients’ physical health concerns may be overlooked because of a mental health diagnosis already in their chart. Equally, I never want anyone to fear a mental health diagnosis because they worry it will affect their access to proper medical care.

Real work needs to be done to find a healthy balance between the effective treatment of both physical and mental health needs. Let’s start the conversation!