Hypermobile Ehlers Danlos Syndrome and Hypermobile Spectrum Disorder: Migraines
It has been well documented here that people with EDS commonly suffer a variety of headache types. That being said, the majority of my patients with hypermobility related conditions return from the neurologist with the diagnosis of migraine.
Medical researchers note that there is a degree of medical uncertainty when it comes to migraines. Migraines can effect people in different ways and have varying responses to medication [2] [3]. With this uncertainty in mind, I thought it might be worth sharing a theory proposed by neurologist, Dr. William Sedley [3].
Sedley proposes that from an evolutionary (“survive and thrive”) perspective, migraines serve a protective role. Sedley suggests migraines are an early warning system for “impending allostatic failure.” Allostasis is physiological regulation, or in simple terms, your body’s attempt to keep its chemistry in balance. Sedley suggests that when your brain detects a concerning imbalance, or detects that you are in a situation that previously created a concerning imbalance, it makes itself more sensitive to warn you.
Sedley highlights that his theory for migraine shares the same mechanisms proposed for fibromyalgia, chronic fatigue syndrome, chronic widespread pain, irritable bowel syndrome, postural orthostatic tachycardia syndrome, and functional neurological disorder. The idea that these conditions would share similar mechanisms not only rings true to many of my patients’ experiences, but during the Ehlers Danlos Society’s 2023 Fatigue Virtual Summit, Dr. Helen Cohen also emphasizes the overlapping mechanisms and labels these mechanisms “central sensitization syndrome.”
I understand why you might question this evolutionary protection theory as having a migraine would leave you more vulnerable to being attacked by a predator. But the following is my attempt at simplifying Sedley’s rationale:
- People, and their bodies, have to react to a wide variety of threats to survive and thrive, not just predators
- People’s bodies have to react “loud” enough to ensure that we can “hear” it and if we aren’t listening then escalate to the point we can’t ignore it
- People are more likely to survive with a system that overreacts than a system that underreacts
- Reacting pre-emptively to a variety of threats requires a complex defense system
- Complex defense systems require feedback to ensure they are reacting sufficiently
- This complexity results in more opportunity for error and feedback systems can re-enforce that error
Essentially, Sedley is suggesting a migraine is your brain’s best attempt at warning you that one or more threats to your ability to survive and thrive are present, but this alarm system’s warnings are not always that clear and can be triggered prematurely.
I applied this rationale to my own personal migraine experiences, as follows, to sense check it.
When I was a 17-years-old I would get migraines three or four days per week. My migraines pretty consistently happened when I would exercise in the morning. My migraine would start with sensitivity to light, followed by a ring of blurry vision called “aura,” and then after about an hour I would get a headache along with more light sensitivity. The headache and light sensitivity then lasted about four hours.
At the time, I figured my migraine triggers were low blood sugar, exercise, and glaring light. I tried to reduce my migraines by eating something sugary 15 minutes before exercise, slowly warming up, and avoiding glare. To some extent, these strategies helped, but my migraines didn’t stop until I stopped exercising in the morning.
Fast forward to today and I do all my exercise in the morning, preferably in the sun light, and I haven’t had any migraines. So if it isn’t the morning, or the light, then what was triggering my migraines?
With Sedley’s theory in mind, I reflected on what may have been stressing my system and realized that I was exercising a lot, wasn’t eating enough, and had terrible sleep patterns. When I think about these factors it makes sense that my brain would send warning signals at the mere idea of waking up to an alarm to exercise after a night of fasting.
So my interpretation of my migraines wasn’t totally off, but my actions were not sufficient to correct the imbalance. I now sleep well and eat plenty. As for the light/glare, Sedley’s theory suggests that the light sensitivity was likely a warning that I thought was a trigger, but then via feedback systems re-enforcing this as a sign of danger, intense light/glare became a trigger.
My personal migraine experience wasn’t that complicated, but many of my patients have very complicated conditions. Sedley goes on to suggest that just identifying and labeling the causes of your physiological imbalance can help your brain interpret your internal signals and improve your brains predictive accuracy (this is called improved interoception). From there the aim is to develop strategies to reduce, remove, or rectify the physiological “threats.”
Another medical theory that agrees with Sedley’s proposition is called “Dispositionalism.” If you have seen a doctor and were given the diagnosis of (medically unexplained) migraines, I recommend looking into a dispositionalism approach by reading chapter seven in Rethinking Causality, Complexity and Evidence for the Unique Patient, and seeing if you can start to piece together the dispositions for your migraine mystery.
Want to read more of Aaron’s articles on EDS, click here.
- Sedley, W., Kumar, S., Jones, S., Levy, A., Friston, K., Griffiths, T., & Goldsmith, P. (2024). Migraine as an allostatic reset triggered by unresolved interoceptive prediction errors. Neuroscience and biobehavioral reviews, 157, 105536. https://doi.org/10.1016/j.neubiorev.2024.105536
- Anjum, Rani Lill & Copeland, Samantha & Rocca, Elena. (2020). Rethinking Causality, Complexity and Evidence for the Unique Patient A Cause Health Resource for Healthcare Professionals and the Clinical Encounter: A Cause Health Resource for Healthcare Professionals and the Clinical Encounter. 10.1007/978-3-030-41239-5
- Henderson Sr. FC, Austin C, Benzel E, Bolognese P, Ellenbogen R, Francomano CA, Ireton C, Klinge P, Koby M, Long D, Patel S, Singman EL, Voermans NC. 2017. Neurological and spinal manifestations of the Ehlers–Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:195–211
