When I first fell ill with Long COVID, and before I understood dysautonomia, I was confused as to why I had so many seemingly unrelated symptoms. Because our healthcare system is divided by organ systems, I made appointments with many different specialists to talk about each symptom. I found a cardiologist for my racing heart, a neurologist for my headaches, a gastroenterologist for my newly lost appetite and abdominal pain, even a urologist for sudden-onset bladder issues. As a physician, the symptoms didn’t make sense to me; they didn’t fit together in a way I had been taught. In medicine we discuss diseases that present with a “constellation of symptoms.” The symptoms may not initially appear connected, but once you identify a common denominator, you see a picture, and with it a guide to treatment.
For many of us with Long COVID, the picture remains very blurry. Our symptoms do not appear to be caused by one factor – in fact, they may not be – and that adds to the burden of finding effective treatment for each individual complaint. For some of us, however, the symptoms connect by a condition called dysautonomia. Dysautonomia is a dysfunction of the autonomic nervous system, the network of nerves and receptors that orchestrate our body’s functions, mostly independent of our own will. The autonomic nervous system is what our makes our body literally tick.
Dysautonomia explains several of my chronic symptoms, including POTS, postural orthostatic intolerance syndrome, and I know this condition affects many of you. That’s why I’m excited to share the latest episode of the Long Covid, MD podcast. I had the privilege of speaking with Dr. Alba Azola, Assistant Professor of Physical Medicine and Rehabilitation at Johns Hopkins University, dysautonomia expert, and co-director of the Johns Hopkins-UT Southwestern Brain Health Program. She has been caring for patients with Long COVID and dysautonomia for several years, and in our conversation she shares invaluable insights into the complexities of dysautonomia, in the context of Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Below are some key takeaways from our conversation:
Understanding Dysautonomia
- Dysautonomia is a dysfunction of the autonomic nervous system, which regulates involuntary bodily functions like heart rate, digestion, and temperature control.
- Common symptoms include orthostatic intolerance (difficulty standing), brain fog, temperature dysregulation, and gastrointestinal issues. Many patients also experience postural orthostatic tachycardia syndrome (POTS), characterized by a rapid heart rate upon standing with variable changes to blood pressure.
Holistic Approach to Care
Dr. Azola emphasized the importance of personalized, patient-centered care:
- Screener Tools: Use of the COMPASS 31 questionnaire helps identify and assess the severity of autonomic dysfunction.
- Interconnected Symptoms: Dysautonomia often affects multiple systems, including digestion, bladder function, and temperature regulation. Recognizing these connections is key to effective management.
Non-Pharmacologic Interventions
- Hydration and Salt: Increase daily water intake to at least 3 liters and consider sodium supplementation, unless contraindicated by conditions like hypertension.
- Compression Therapy: Compression garments can improve blood flow and mitigate symptoms of orthostatic intolerance.
- Tailored Physical Activity: Supine exercises (e.g., Pilates or range of motion exercises) are recommended to avoid triggering post-exertional malaise (PEM). For those with more energy, swimming or recumbent biking might be suitable.
Pharmacologic Treatments
Dr. Azola shared a range of medication options to address specific symptoms, to be considered and used, of course, while under the care of a physician or other qualified health care provider.
- Midodrine: Supports blood pressure to prevent orthostatic intolerance.
- Fludrocortisone: Increases blood volume by promoting fluid retention.
- Beta Blockers and Ivabradine:Manage heart rate without significantly affecting blood pressure.
- Mestinon (Pyridostigmine): Enhances parasympathetic tone, improving symptoms like early satiety and standing tolerance.
Collaborative and Nuanced Care
Dysautonomia specifically and Long COVID in general benefits from personalized care. Dr. Azola highlighted the need for:
- Collaboration Among Specialists: Dysautonomia often requires input from cardiologists, neurologists, and gastroenterologists.
- Focus on the Patient’s Priorities: Goals should align with improving quality of life and enabling daily activities.
- Proactive Planning for Reinfection: Having a treatment plan for potential reinfections, including medications like Paxlovid and metformin, is essential for minimizing symptom exacerbation.
Dr Azola’s Words of Wisdom
Dr. Azola left us with these vital reminders:
- “Your Symptoms Are Real”: Dysautonomia is a genuine condition that requires medical attention and should never be dismissed.
- “Find a Curious Provider”: A compassionate and inquisitive physician willing to explore your symptoms holistically can make all the difference.
- “Self-Care is Key”: Protect yourself through masking, hydration, pacing, and rest.
I could speak with Dr Azola for hours about the complexities of dysautonomia and how we can move our medical field toward one that provides a more nuanced, patient-centered approach to care. What resonated with you most? Have you worked with a specialist or found strategies that help manage your symptoms?
Let’s continue the conversation. Reach out to me at longcovidmd@gmail.com or subscribe here on Substack. For resources and links to Dr. Azola’s work, check the show notes.
Take care and bye for now!