Missed Connections: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Hypermobility Syndrome

As holistically minded doctors always on the hunt for the root cause of disease, we are often finding conditions that commonly overlap each other. As I began focusing on Mast Cell Activation Syndrome, I’d also find patients affected by Postural Orthostatic Tachycardia Syndrome (POTS) and Hypermobility Syndrome.

At this stage of our medical knowledge, there does appear to be a strong correlation between the three conditions. In 2021, a review article by Allergy and Asthma Proceedings showed that Mast Cell Activation Syndrome within the group of POTS and EDS affected 31% of the group versus only 2% in the non-POTS and EDS group.

Now, let’s review these three syndromes…

For Mast Cell Activation Syndrome (MCAS), please refer to my full review article on the topic as it is still very relevant to this entire discussion.

Dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is a form of dysautnomia. Dysautonomia is where one has issues with the automatic processes of the body like blood pressure, heart rate, temperature, etc. POTS is a form of dysautonomia.

Postural = related to the position of your body

Orthostatic = related to standing up

Tachycardia = rapid heartbeat over 100 beats per minute

Syndrome = symptoms associated with those physiologic changes

Symptoms of POTS/Dysautonomia can include:

·      Racing heart

·      Heart palpitations

·      Shortness of Breath

·      Chest Pain

·      Dizziness

·      Light-headedness

·      Almost fainting or actually fainting

·      Fatigue

·      Exercise Intolerance

·      Intolerance to standing upright

This diagnosis is made when all other causes of these physiologic changes have been ruled out like dehydration, acute blood loss.

There are four subtypes of POTS:

·      Neuropathic POTS

o   Damage to small fiber nerves affects constriction of blood vessels in the limbs and abdomen

·      Hyperadrenergic POTS

o   Associated with elevated stress hormone, epinephrine

·      Hypovolemic POTS

o   Due to abnormally low levels of blood

·      Secondary POTS

o   Secondary to a disease process like diabetes, autoimmune diseases (Lupus, Sjorgren’s) and chronic infections

With treatment of MCAS, many patients with POTS see a dramatic improvement in their symptoms and researchers are considering making MCAS a subtype of POTS/Dysautonomia.

Ehlers-Danlos Syndrome/Hypermobility Syndromes (EDS)

There are 13 subtypes of Ehlers-Danlos Syndrome, but the most common subtype affecting 80-90% of these patients is the hypermobility subtype abbreviated as hEDS.

The 13 types of EDS include:

·       Arthrochalasia (aEDS)

·       Brittle cornea (BCS)

·       Cardiac-valvular (cvEDS)

·       Classical (cEDS)

·       Classical-like (clEDS)

·       Dermatosparaxis (dEDS)

·       Hypermobile (hEDS)

·       Kyphoscoliotic (kEDS)

·       Periodontal (pEDS)

·       Musculocontractural (mcEDS)

·       Myopathic (mEDS)

·       Spondylodysplastic (spEDS)

·       Vascular (vEDS)

In general, EDS is a condition characterized by hypermobility of joints likely leading to dislocations and chronic pain. In fact, 88% of professional ballet dancers were found to have genetic mutations associated with connective tissue disorders. Many children with these super bendy abilities will end up in sports where these abilities are prized like dance and gymnastics.

hEDS can also have symptoms of chronic fatigue, digestive issues, dysautonomia, headaches and Mast Cell Activation Syndrome.

EDS can affect multiple systems of the body including:

·       Skin

·       Lungs/Heart

·       Digestive System

·       Gynecological Systems

·       Bladder

·       Eyes/Ears/Nose Throat

·       Neurological

·       Psychological

All of these areas of concern can throw mainstream medicine for a loop and often patients get gaslit for having so many complaints that appear unrelated at the surface. This can be extremely frustrating and heartbreaking to patients.

Although EDS is not considered a common condition in mainstream medicine, we are certainly seeing an uptick in hypermobility syndromes and their associated diseases. The challenge here is the argument of whether we have more knowledge/awareness or is there an environmental impact. It is likely both.

A proper understanding of the patient and diagnosis is important to provide appropriate care for these patients and create a team of providers to support their healing journey.

This has been shared from the following wonderful article:

Kohn, A., Chang, C. The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Clinic Rev Allerg Immunol 58, 273–297 (2020). https://doi.org/10.1007/s12016-019-08755-8

With a conventional medicine approach, these syndromes just like Fibromyalgia, Chronic Fatigue Syndrome and Irritable Bowel Syndrome become trash bag diagnoses translating to a collection of symptoms that are present with an unknown cause. Over time, medications are administered to treat/manage the symptoms while the cause is never fully understood.

Please don’t get me wrong… there is a time and place to manage symptoms to help someone have more comfort in their day-to-day life. But once that has been established, it is important to delve deeper to truly heal the body and minimize more long-term effects.

All three conditions can be activated or worsened by underlying issues like:

-       Chronic infections like viruses, Lyme, Bartonella, other co-infections

-       Mold and Mycotoxins

-       Glyphosate/pesticide/herbicides

-       Electromagnetic Frequency Exposures

What can I do now to support these three conditions?

Nourish your adrenal glands that help your body to manage stress and minimize exacerbations of POTS/MCAS/EDS/Dysautonomia. By supporting the adrenal glands you are in turn also supporting:

-       Blood Sugar Balance

-       Blood Pressure Support

-       Increased Energy

-       Ligament Strength

3 Tips to Supporting Your Adrenal Health:

1)    Stay on schedule – even as we age, your body continues to want to know when you are going eat, sleep, move and poop. When schedules are erratic, the body cannot anticipate your rhythm, which will in turn increase stress.

2)    Eat Blood Sugar Balancing Meals – Start with protein and fiber rich vegetables followed by healthy fats and complex carbohydrates.

3)    Add salt to your water – your adrenals manage your blood pressure. If you tend to run low blood pressure, you can bolster it up and improve your energy too with added real electrolytes like LMNT.

Always consult with your doctor regarding any of the above information and how it may relate to your individual health history.

Wang E, Ganti T, Vaou E, Hohler A. The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome. Allergy Asthma Proc. 2021 May 1;42(3):243-246. doi: 10.2500/aap.2021.42.210022. PMID: 33980338.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

https://www.ehlers-danlos.com/

Vera AM, Peterson LE, Dong D, Haghshenas V, Yetter TR, Delgado DA, McCulloch PC, Varner KE, Harris JD. High Prevalence of Connective Tissue Gene Variants in Professional Ballet. Am J Sports Med. 2020 Jan;48(1):222-228.