Migraines and Ehlers-Danlos Syndrome

Living with Ehlers-Danlos Syndrome (EDS) often means living with a complex web of symptoms. Joint pain, fatigue, gastrointestinal issues, and brain fog are all common — but for many people with EDS, one of the most debilitating symptoms is frequent, intense migraines. These aren’t just regular headaches. They’re often severe, long-lasting, and resistant to standard treatments.

Yet despite how common migraines are in the EDS community, many patients find their concerns dismissed or misattributed. This article explores the real reasons why people with EDS experience migraines, and how a deeper understanding of the root causes — particularly instability in the cervical spine — can lead to more effective relief.

How Common Are Migraines in EDS?

Research shows that people with EDS, especially the hypermobile subtype (hEDS), are far more likely to suffer from migraines compared to the general population. One study found that 66% of people with hEDS or hypermobility spectrum disorders reported chronic headaches or migraines, and another observed that migraines were three times more common in hypermobile individuals than in those without hypermobility.

Despite these numbers, most major headache guidelines barely mention EDS. Patients are often left trying medication after medication without lasting relief because the root cause of their headaches is misunderstood or overlooked entirely.

Why Do People with EDS Get Migraines?

Migraines in EDS are often multifactorial, meaning there isn’t just one cause — there are many interconnected factors that can trigger or worsen them. Here are some of the most common contributors:

• Cervical Instability: Loose ligaments in the neck — especially at the craniocervical junction (C0-C2) — can cause the vertebrae to shift, compressing nerves and blood vessels that supply the brain.
• Disrupted CSF Flow: Instability in the upper cervical spine can block or alter the flow of cerebrospinal fluid (CSF), leading to increased intracranial pressure or even “toxic brain” symptoms like brain fog.
• Nerve Compression: Ligament laxity can stretch or irritate peripheral nerves, including the occipital and trigeminal nerves, which are heavily involved in headache generation.
• TMJ Dysfunction: Hypermobile jaws can lead to misalignment and muscle tension in the head and neck, which is a known trigger for headaches.
• Dysautonomia: Many EDS patients also have POTS or other forms of autonomic dysfunction, which can cause blood pressure instability and poor cerebral blood flow.
• Mast Cell Activation Syndrome (MCAS): Histamine-related inflammation and vascular changes may exacerbate migraines.
• Hormonal Fluctuations and Sleep Disruption: These are common in EDS and both are powerful migraine triggers.

Types of Headaches in EDS

EDS-related headaches aren’t one-size-fits-all. Patients often report experiencing multiple types of headaches:

• Migraines: Throbbing, light-sensitive headaches that may include nausea, visual disturbances (auras), or vomiting.
• Cervicogenic Headaches: Headaches that originate from the neck, often triggered or worsened by movement.
• Vestibular Migraines: Migraines with vertigo, imbalance, and motion sensitivity, possibly linked to inner ear involvement or brainstem compression.
• Tension-Type Headaches: Muscle tightness and postural strain are common in EDS, leading to chronic tension headaches.
• CSF Pressure Headaches: Caused by either high or low cerebrospinal fluid pressure, these can result from Chiari malformation or spontaneous CSF leaks, both more common in EDS.

How Neck Instability Triggers Headaches

One of the most compelling — and underrecognized — explanations for migraines in EDS is upper cervical instability.

In people with hypermobile EDS, the ligaments that support the head and neck can become stretched or weakened. This leads to micromovements of the vertebrae at the base of the skull (C0-C2), which in turn can tug on the spinal cord, compress arteries and veins, and irritate sensitive nerves.

Even without radiological proof of craniocervical instability, patients may still experience abnormal motion at this junction due to ligament laxity. Studies using dynamic imaging techniques like Digital Motion X-ray (DMX) have shown how these subtle shifts can cause headaches, dizziness, tinnitus, and visual changes.

Migraine in EDS: What Makes It Worse

Not only are migraines more common in EDS — they’re also more intense and disabling.

Compared to the general population, patients with hEDS:

• Develop migraines at a younger age.
• Experience more migraine days per month.
• Report more severe pain and more associated symptoms like light sensitivity and nausea.
• Often don’t respond well to typical treatments.
• Have lower medication use, possibly due to side effects or sensitivities.

These migraines aren't “just headaches” — they’re deeply disruptive, and they often co-exist with other pain syndromes, amplifying the overall disease burden.

What Actually Helps?

Many patients with EDS and migraines have tried everything from triptans to topiramate — often with limited success. Why? Because standard migraine medications may not address the underlying mechanical and neurological contributors to their headaches.

Here's what may help:

🔍 Diagnostic Tools

• Digital Motion X-ray (DMX) or Upright MRI: These can show real-time cervical instability not visible in traditional scans.

💉 Interventional Treatments

• Prolotherapy: Injection-based treatment to strengthen loose ligaments.
• Occipital nerve blocks or trigger point injections: Target nerve irritation at the root of migraine pain.
• Botulinum toxin (Botox): Can reduce muscle tension and block pain signals.
• Surgical options: In rare and severe cases, fusion surgery may be considered.

🧘 Lifestyle & Rehab

• Targeted physical therapy: Especially focused on neck stability and postural alignment.
• Vestibular rehabilitation: Especially for those with vertigo or balance issues.
• Hydration and anti-inflammatory diet: May reduce triggers and support tissue health.
• Supplements: Magnesium, riboflavin, and CoQ10 may help some patients.
• Stress and sleep management: Essential for reducing migraine frequency.

When to Investigate for Craniocervical Instability

You don’t need to have all the classic signs of instability to be affected. Consider further evaluation if your migraines are accompanied by:

• Frequent neck pain or grinding
• Dizziness or vertigo
• Tinnitus or visual auras
• Facial numbness or nerve pain
• Pain that worsens with head movement or posture

It’s especially important to work with an EDS-aware neurologist, pain specialist, or neurosurgeon, ideally someone experienced in diagnosing CCI or AAI.

Takeaway

If you’re living with Ehlers-Danlos Syndrome and chronic migraines, you’re not alone — and you’re not imagining things. The pain is real, and for many, it’s driven by an often-overlooked cause: mechanical instability of the cervical spine.

Getting real relief may require looking beyond standard headache treatments and addressing the unique biomechanics of your neck and nervous system. With the right diagnosis and a comprehensive treatment plan, it’s possible to reclaim quality of life.

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References:

Malhotra, A., Pace, A., Ruiz Maya, T., Colman, R., Gelb, B. D., Mehta, L., Kontorovich, A. R. (2020). Headaches in hypermobility syndromes: A pain in the neck? American Journal of Medical Genetics Part A. PMID: 32940405

Chopra, P. (2025, February 17). Head Pain in Ehlers-Danlos Syndrome (EDS). The Center for Complex Conditions. https://www.painri.com/post/head-pain-migraine-headache-ehlers-danlos-syndrome-eds

Puledda, Francesca et al. “A study of migraine characteristics in joint hypermobility syndrome a.k.a. Ehlers-Danlos syndrome, hypermobility type.” Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology vol. 36,8 (2015): 1417-24. doi:10.1007/s10072-015-2173-6

Martin, Vincent T, and Derek Neilson. “Joint hypermobility and headache: the glue that binds the two together--part 2.” Headache vol. 54,8 (2014): 1403-11. doi: 10.1111/head.12417