When Overactive Mast Cells Trigger POTS Symptoms: My Personal Experience
A few months ago, I had a wake-up call about just how interconnected the body truly is. My family and I were in the middle of home renovations involving fresh paint, dust, and chemicals when suddenly, my body went haywire. After being out of my house for over 9 days, I woke up the morning after we returned feeling like I had been hit by a Mac truck. Thankfully, I wasn't seeing clients that day because I felt awful. I was sneezing nonstop, felt dizzy and off-balance, and experienced vertigo-like symptoms that were totally different from my usual hypovolemic POTS flares.
At first, I brushed it off. I thought maybe after my meds kicked in (ADHD and POTS meds), I would level out and start feeling better. But the symptoms dragged on well into the afternoon. I never considered myself someone with a mast-cell problem. I don’t have rashes or hives, I don’t deal with constant allergies, and I’ve never gone into anaphylaxis. My main symptoms have always been more GI-related, and those were well managed at this point in my healing journey. But this felt different. It hit fast and hard, and my nervous system felt like it had been hijacked.
I shared what I was experiencing on TikTok, and several people mentioned mast cell activation. Around the same time, I had listened to a Bendy Bodies Podcast episode with Dr. Linda Bluestein interviewing Dr. Theoharides. He explained how overactive mast cells can be a major trigger for dysautonomia symptoms. His research really clicked for me. Mast cells aren’t just about allergies or skin reactions; they communicate with the nervous system. When they release inflammatory mediators like histamine, they can disrupt blood vessel tone, gut motility, and even brain function.
Dr. Theoharides developed a supplement line based on this research, and I decided to try NeuroProtek. Within a few weeks, I noticed a clear improvement in my brain fog. It wasn’t subtle - it was like the fog lifted for the first time in years.
What Helped Me Stabilize My Mast Cells
I’m not giving medical advice here, just sharing what personally made a difference for me. Everyone’s body and chemistry are different, so always consult with your provider before trying anything new.
Here’s what I’ve been using consistently:
NeuroProtek
This supplement contains luteolin, quercetin, and rutin—bioflavonoids that help stabilize mast cells and reduce the release of histamine and inflammatory cytokines. They also support the blood-brain barrier and calm neuroinflammation, which is why it’s often used for brain fog and cognitive symptoms.
Cromolyn Sodium Nasal Spray
Available over-the-counter, this spray works locally to calm mast cells in the nasal passages and reduce histamine release triggered by airborne irritants like dust, mold, or chemicals.
DAO (Diamine oxidase) Enzyme
DAO helps break down excess histamine in the body and keep histamine levels in a healthy range.
Vitamin C (500 mg daily)
Vitamin C is a natural antihistamine and mast-cell stabilizer. It helps lower histamine levels and supports immune balance, making it a gentle but effective daily support.
PEA (Palmitoylethanolamide)
PEA helps modulate the immune response and calm neuroinflammation. It’s a fatty acid compound that supports the endocannabinoid system and can reduce pain and hypersensitivity.
Pepcid (H2 blocker) + Allegra (H1 blocker)
These work on different histamine receptors. H1 blockers like Allegra target allergy-type symptoms, while H2 blockers like Pepcid help reduce histamine-related inflammation in the gut and vascular system. Together, they can reduce overall histamine load and calm the body’s overreaction.
How Overactive Mast Cells Affect the Nervous System
Mast cells and the autonomic nervous system are constantly communicating. When mast cells release histamine, prostaglandins, and cytokines, they cause blood vessels to dilate and become more permeable. That means less blood volume returning to the heart and brain—contributing to symptoms like dizziness, brain fog, fatigue, and orthostatic intolerance.
Histamine also stimulates the vagus nerve and other components of the autonomic nervous system, which can throw off the delicate balance between the sympathetic and parasympathetic systems. Essentially, overactive mast cells keep the nervous system in a “danger” state, reinforcing the fight-or-flight loop that drives dysautonomia.
For those of us with Ehlers-Danlos Syndrome, there’s another layer. Loose connective tissue means our blood vessels and joints are more unstable, which can trigger mast cell activity. The body perceives this instability as unsafe. Combine that with chronic nervous-system hypervigilance, and you have a recipe for constant dysregulation.
What I Was Already Doing for Dysautonomia
Before discovering the mast cell piece of the puzzle, I was already working on regulating my nervous system and supporting my body’s baseline needs:
• Electrolyte support: I use one packet of LMNT every day, sometimes twice. Adequate sodium is critical for blood volume and brain perfusion.
• Prioritizing sleep: Without restorative sleep, your nervous system can’t reset. Dysautonomia management depends on a regulated circadian rhythm.
• Gentle movement and pacing: I focus on low-impact strengthening, mindful breathing, and balancing activity with rest.
• Nervous system downtraining: Meditation, vagus-nerve stimulation, and other parasympathetic practices help my body shift out of chronic fight-or-flight.
These foundational strategies are essential for anyone with POTS, EDS, or chronic illness—but for me, they weren’t enough until I addressed my mast cell health. Once I did, my fatigue, cognitive symptoms, and reactivity all improved.
Understanding the Bigger Picture
Dysautonomia is a nervous-system disorder, not a heart condition. The rapid heart rate, blood pressure fluctuations, and temperature intolerance are all symptoms of an underlying imbalance in autonomic regulation. When mast cells are firing excessively, they amplify this imbalance, causing more blood flow issues, increased fatigue, and further sensory overload.
If you’ve been doing all the “right” POTS strategies—salt, compression, recumbent exercise, hydration, rest—and still not feeling like yourself, it may be worth exploring whether mast cell activation is part of your story.
The overlap between MCAS, POTS, and EDS (often called the “trifecta”) is real and complex. You can’t fully regulate your nervous system if your immune system and connective tissue are constantly sending “danger” signals. Treating all three together is often what moves the needle.
Final Thoughts
Healing from POTS isn’t linear, and there’s rarely one single cause or solution. But learning that overactive mast cells were contributing to my symptoms gave me a missing piece of the puzzle. When I started stabilizing them, I finally felt the mental clarity and energy I had been chasing for years.
Traditional POTS interventions are still essential, but they may not be enough on their own. Sometimes the most meaningful breakthroughs come from looking at the body through a more integrated lens—nervous system, immune system, and connective tissue all working together.
If this resonates with you, take it as a reminder that your symptoms aren’t “just in your head.” Your body is giving you data. You deserve care that looks at the whole picture.
Author:
Dr. Nicole Woodruff, OTD, OTR/L, PCES, GTS, RYT
Occupational Therapist specializing in Pelvic Health, Hypermobility, and Chronic Illness