EDS Medical Gaslighting, MCAS & Migraine with Dr. Ina Stephens | Ep 213

What happens when doctors misunderstand Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)? Sometimes the consequences go far beyond frustration or delayed treatment.

In this episode of Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein is joined by Dr. Ina Stephens, Associate Director of the UVA Health EDS and Hypermobility Disorder Center, to answer listener questions about MCAS, gut health, circadian rhythm, migraine, pediatric hypermobility, and more.

They also confront a disturbing reality for some families navigating poorly understood conditions: medical gaslighting, misdiagnosis, and inappropriate Munchausen-by-proxy referrals.

Can you support a healthy gut microbiome with MCAS if fermented foods trigger symptoms? Drs. Bluestein and Stephens discuss the role of dietary fiber, polyphenol-rich foods, exercise, and thoughtful antibiotic use, including why the narrowest effective antibiotic may be preferable when treatment is necessary.

They also explain why resetting a disrupted circadian rhythm involves more than simply going to bed earlier, and how morning light exposure can help shift the body’s internal clock.

Then the conversation turns to migraine management in hypermobile patients. Dr. Stephens shares her approach to supplements and medications, including magnesium glycinate, CoQ10, and CGRP-targeting medications such as ubrogepant (Ubrelvy,) while explaining why Botox (onabotulinumtoxin A) is not usually a first-line migraine treatment and may be problematic for people with significant craniocervical instability.

The episode also tackles a question with major implications for the next generation: Should children be evaluated for hypermobile EDS earlier (hEDS)? Dr. Stephens explains how delayed recognition can contribute to years of orthopedic problems, psychological distress, inappropriate diagnoses, and missed opportunities for prevention and support.

Finally, the episode closes with a Hypermobility Hack on low dose naltrexone (LDN): how it may work, why benefits can take time to appear, and why patience matters when evaluating whether it is helping.

Takeaways:

Could the wrong antibiotic choice create problems long after the infection is gone?

Why might morning sunlight matter more than forcing yourself to go to bed earlier?

When could Botox actually make headaches and neck symptoms worse in someone with hypermobility?