For most of us, the body’s automatic systems quietly do their job — keeping blood pressure steady, regulating temperature, managing digestion, and keeping our hearts beating in rhythm. But what happens when that automatic balance begins to fail?
That’s the reality for people living with Pure Autonomic Failure (PAF) — a rare neurological disorder that disrupts the body’s autonomic nervous system, the network that controls these involuntary functions.
⚙️ What Is Pure Autonomic Failure?
PAF occurs when the nerves that control blood pressure, heart rate, and other automatic functions gradually degenerate. The result is a body that struggles to adapt to even simple changes — like standing up.
Common symptoms include:
- Severe drops in blood pressure (orthostatic hypotension) when standing
- Lightheadedness, fainting, or fatigue
- Impaired sweating and temperature regulation
- Digestive and urinary challenges
- Cold extremities and poor circulation
These symptoms don’t arise from the heart itself but from faulty nerve signaling that fails to keep the circulatory system balanced.
🧩 How PAF Fits Into the Bigger Picture
PAF is part of a family of disorders called synucleinopathies, conditions linked by the abnormal accumulation of a protein called alpha-synuclein.
This same protein is involved in Parkinson’s disease (PD) and Multiple System Atrophy (MSA).
- In PAF, alpha-synuclein primarily affects the peripheral autonomic nerves.
- In MSA, it extends into the brain and spinal cord, adding movement and coordination problems.
- In Parkinson’s, it mostly targets dopamine-producing neurons in the brain, leading to tremors and slowness.
While PAF may remain stable for many years, in some individuals it can evolve into MSA or Parkinson’s disease — underscoring how interconnected these disorders are.
📉 A Personal Reflection
“I’ve been working hard to keep my blood pressure up — yet even after taking Midodrine 2.5 mg, my readings hover around 74/42, occasionally reaching 85/54. The best I’ve seen lately is 98/73.
After reading research from major health institutions one finding keeps surfacing: checking norepinephrine levels may be key in understanding autonomic dysfunction.
Descriptions of MSA — autonomic failure combined with movement and coordination issues — resonate uncomfortably close to my own experience. It’s not easy to admit how much this affects daily life, especially when pride and persistence can mask the depth of what’s going on.”
These words capture what many people with autonomic disorders experience — the quiet battle between determination and the body’s limits.
💡 The Road Ahead
There is currently no cure for PAF, but management is possible. Treatments focus on improving blood pressure and reducing symptoms through:
- Medications like Midodrine, Droxidopa, or Fludrocortisone
- Increased fluids and salt intake ( optioned as per recommended by my Neurogist for BUOY)
- Compression garments and sleeping with the head of the bed elevated
- Careful activity pacing and monitoring
Ongoing research continues to explore biomarkers, such as norepinephrine and alpha-synuclein patterns, to better diagnose and predict the course of these conditions.
❤️ Living with PAF
For me living with Pure Autonomic Failure means constantly balancing between caution and courage. It challenges both body and spirit — but knowledge, awareness, and compassionate care can make a real difference.
Raising understanding of autonomic disorders like PAF and MSA isn’t just about medicine; it’s about restoring dignity, stability, and hope to those navigating life when even standing upright becomes a challenge.
Embraceable Mind 