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? How can missed or delayed recognition of hEDS in childhood affect orthopedic and mental health outcomes years later? What happens when physicians misunderstand EDS so profoundly that a family is suspected of fabricating illness? Why can low dose naltrexone seem like it is “not working” before it has had enough time to take effect? Want to learn more about the UVA EDS Center? For Appointments and Questions: [email protected] UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www\.bendybodiespodcast\.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www\.human-content\.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠[email protected]⁠⁠⁠ Part of the Human Content Podcast Network Go http://www.AquaTru.com now for 20% off (your purifier) using promo code BENDY. FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. Chapters: 00:00 EDS Starts Early 00:34 Meet Dr Ina Stephens 02:12 Fermented Foods MCAS 02:39 Microbiome Support Basics 10:47 Antibiotics Probiotics 15:49 Medical Distrust CPS Risk 29:31 Migraine Treatments Botox 41:16 Feverfew Dosage Basics 41:30 Avoiding Rebound Headaches 43:12 CGRP Rescue Meds Explained 44:51 Why Diagnose EDS Early 49:05 Early Intervention and Prevention 56:42 Parenting Tips and Clinic Access 01:06:54 LDN Patience and Closing Resources Learn more about your ad choices. Visit megaphone.fm/adchoices