In May of 2022, Halsey announced that they have diagnoses of POTS, EDS & MCAS. For many, these may just sound like a bunch of random letters. But to many with POTS, EDS & MCAS, these are an all-too-familiar triad of syndromes that can significantly alter life.
WHAT IS POTS?
POTS stands for Postural Orthostatic Tachycardia Syndrome. For more information, see my post on POTS. In summary, POTS consists of several symptoms including increased heart rate upon standing, dizziness, migraines, fatigue, etc.
WHAT IS EDS?
EDS stands for Ehlers-Danlos Syndrome. It is a collagen/ connective tissue disorder often characterized by hypermobility. There are several types of EDS, but the most common is hEDS.
WHAT IS MCAS?
MCAS stands for Mast Cell Activation Syndrome, where the body’s mast cells (allergy cells) respond inappropriately.
HOW DO THESE 3 SYNDROMES RELATE?
As is often the case, there isn’t sufficient research and doctors don’t entirely know for sure. However, there are some pretty well tracked theories, that I’ll explain.
1. Faulty Collagen – EDS & POTS
EDS means faulty collagen, and often weak blood vessels. If your blood vessels don’t constrict, blood can’t get pushed up to your head & heart, leading to POTS symptoms.
2. Angry Mast Cells- MCAS & POTS
When mast cells get activated, they release mediators such as histamine, which can be vasodilators. Many mast cells are right near nerves, so these mediators can act on these neighboring nerves. This can cause dysautonomia or POTS-like symptoms such as tachycardia or blood pressure changes.
3. Altered Mast Cells- EDS & MCAS
Cells of the body are surrounded and supported by a network called the Extracellular Matrix (ECM), which can be made from structural materials like collagen. Mast Cells can stick to the ECM, which in turn alters their behavior. EDS, as a connective tissue disorder, could change the ECM enough to cause a change in Mast Cell behavior. (Source: EDS Society)
4. Symptom Overlap
In addition to the interplay of these 3 syndromes, I want to highlight that each of them can cause overlapping symptoms. For example, take a common symptom like headache:
POTS: headaches from lack of blood to brain
EDS: headahces from instability
MCAS: headaches from too much histamine
Other common symptoms include general pain, sinus issues, GI issues, fatigue, dizziness… all of which could be caused by any 3 or a combination of the above.
But there is hope.
1. Treatment Can Help!
Treating any of these syndromes can help improve symptoms in others. For example, treating MCAS with antihistamines and mast cell stabilizers can significantly help with GI issues, headaches, and even POTS symptoms (remember the angry mast cells next to nerves? Calm them down and you may calm down your POTS reaction. In theory. Didn’t work for me, hehe. However treating my MCAS did significantly improve the severity and frequency of my headaches/ migraines)
2. Raising awareness for future research
The more we can raise awareness about each of these syndromes individually, as well as the connection between them, the more research funding they can get.
3. You are not alone.
Browse through this page (and my instagram community) and find hundreds of others who are dealing with these same syndromes, or symptoms of these syndromes. Who are diagnosed and trying treatments, or who are still searching for answers.
Remember- your symptoms and experiences are valid. You deserve health and wellness.
As always, sending light, love, salt & spoons.