The Hidden Reason for Your Mystery Symptoms: Could It Be craniocervical instability (CCI)?

Many people with Ehlers-Danlos syndrome (EDS), Hypermobility Spectrum Disorder (HSD), or neurodivergence live with a confusing puzzle: headaches that don’t respond to medication, constant fatigue, dizziness, brain fog, or even what feels like ADHD. These symptoms are often treated as separate problems—but what if they’re connected?

One hidden cause can be craniocervical instability (CCI)—a condition where the ligaments in the upper neck are too loose to properly support the head. This can disrupt nerves, blood flow, and brain signaling, leading to problems that mimic many other diseases. While CCI can happen to anyone after a severe trauma, for people with connective tissue disorders, it's often a systemic issue rooted in the body's very building blocks.

Let’s explore what CCI is, why it’s different for those with hypermobility, how it’s treated, and why it’s so often missed.

What is CCI—and Why Does It Matter for EDS/HSD?

The junction between your skull and spine is called the

. Think of it as a finely balanced swivel holding up a bowling ball—your head. Normally, strong ligaments and muscles keep it steady, protecting the brainstem, spinal cord, and crucial nerves.

But in people with EDS or HSD, a genetic connective tissue disorder means those ligaments are inherently stretchy and weak. The “swivel” is fundamentally wobbly. This allows for excessive movement between the atlas (C1) and axis (C2) vertebrae, and can even lead to cranial settling (a downward displacement of the skull).

This instability can:

• Stretch or compress the brainstem and upper spinal cord.

• Alter blood flow to the brain.

• Irritate nerves controlling pain, balance, and attention.

This explains why CCI can cause symptoms all over the body—not just in the neck. A similar condition, Atlantoaxial Instability (AAI), happens between the first and second vertebrae and causes very similar symptoms.

How CCI in EDS is Different

It's crucial to understand that CCI in someone with EDS/HSD is fundamentally different from CCI caused by a trauma (like a car accident) in a person with normal connective tissue.

• The Cause: In EDS, the cause is systemic ligamentous laxity—the ligaments are genetically programmed to be loose. In non-EDS patients, CCI is typically caused by a traumatic injury that damages otherwise healthy ligaments.

• The Symptom Profile: For those with EDS, CCI is often just one part of a larger picture. It frequently coexists with other conditions like POTS, Mast Cell Activation Syndrome (MCAS), Chiari Malformation, and tethered cord syndrome. This leads to more severe and widespread symptoms, including significant autonomic nervous system dysfunction (dysautonomia).

• The Treatment Challenge: Because the connective tissue is fragile globally, treatment is more complex. Recovery from procedures can be longer, and the goal is often managing systemic instability rather than fixing one single issue.

Symptoms: When the Neck Whispers in Strange Ways

Because the brainstem controls so many automatic functions, instability can show up as:

• Severe headaches (especially occipital headaches at the base of the skull) and a feeling of a "bobble-head" that's too heavy for the neck.

• Neurological symptoms: Dizziness, vertigo, blurred vision, tinnitus (ringing in the ears), cognitive impairment ("brain fog"), and numbness or weakness in the limbs.

• Autonomic dysfunction (Dysautonomia): This is a hallmark. It includes POTS (racing heart rate upon standing), fainting, temperature dysregulation, and digestive issues. This happens because brainstem compression disrupts the nerve center that controls these automatic functions.

• Musculoskeletal issues: Chronic neck pain, muscle stiffness in the shoulders and upper back, often made worse by holding the head upright.

The Mechanical Basis Theory: This idea helps explain why one unstable neck joint can cause body-wide chaos. It suggests that mechanical pressure on the brainstem (from CCI) can disrupt core neurological functions, leading to systemic issues like chronic fatigue, immune dysregulation, and autonomic dysfunction. This is why treating the neck can sometimes lead to dramatic improvements in seemingly unrelated symptoms.

Why Is It Often Misdiagnosed?

• Symptoms overlap with other conditions like migraine, fibromyalgia, ME/CFS, ADHD, and anxiety.

• Standard imaging may not show it. A static, lying-down MRI might look normal. The instability often only appears during movement or under the weight of gravity.

• It’s a complex puzzle. With frequent co-occurring conditions like Chiari, tethered cord, or CSF leaks, it's hard for doctors to see the whole picture.

• Patients feel unheard. When symptoms seem unrelated, doctors may not consider the neck as a root cause.

This is why many people spend years being treated for symptoms rather than the underlying problem.

How Is CCI Diagnosed?

Diagnosis requires a specialist and a combination of:

1. Clinical evaluation: A skilled practitioner checks for neurological signs, pain patterns, and hypermobility.

2. Dynamic imaging: This is key. Upright MRI (taken while sitting or standing), flexion-extension MRI, or Digital Motion X-ray (DMX) can show abnormal motion between the vertebrae that a standard scan misses.

3. Specialized expertise: Finding a neurologist or neurosurgeon who understands both CCI and connective tissue disorders is essential, as measurement standards and interpretation can vary.

Key point: You cannot self-diagnose CCI. But understanding it helps you ask better questions and seek the right referrals.

What Are the Treatment Options? (Education, Not Medical Advice)

Treatment is a spectrum, from conservative care to surgery, and is always guided by a specialist. The approach is often different and more complex for those with EDS/HSD.

1. Conservative Management (The First Line of Defense)

Supportive Posture (Not Forced Posture) Rather than “holding” your head upright, think about supporting it. Use ergonomic setups and props so your environment helps you, instead of you straining:

• Raise screens to eye level; bring work to you rather than leaning forward.

• Use pillows, rolled towels, or adjustable chairs to support the head and neck during reading or sitting.

• If a position feels tiring or painful after a short time, change it — don’t force yourself to “sit straight” through pain.

• Build deep neck and shoulder stability gradually with a hypermobility-aware physical therapist. The strength enables alignment; forcing alignment without strength can worsen strain.

Activity Pacing & Movement Modifications

• Break tasks into shorter intervals with rest breaks.

• Avoid rapid head turns, jerky movements, heavy lifting over the head, or wide-range neck motions.

• Minimize activities that combine twisting, bending, and load (e.g., carrying heavy groceries while turning).

• Use lighter bags and distribute weight evenly (backpack rather than single-strap bag).

• Schedule physically demanding activities on different days to prevent “stacking” stressors.

Managing Comorbidities to Reduce Overall Load

• Optimise hydration, salt intake, and compression garments if recommended for POTS.

• Address migraine triggers, sleep quality, and mast cell symptoms as guided by your clinicians.

• Adequate nutrition, gentle movement, and stress-reduction can improve tissue resilience and pain tolerance.

Temporary External Support

• A soft cervical collar can offer short-term relief (travel, flares, long car rides).

• Use under professional guidance and only intermittently, since continuous wear weakens muscles.

2. Targeted Rehabilitation & Procedures

• Specialized Physical Therapy: This must be approached with extreme caution. You need a physical therapist experienced with hypermobility and CCI. Standard PT or chiropractic neck adjustments can be dangerous. The goal is to gently and slowly strengthen deep neck stabilizers.

• Prolotherapy: An injectable treatment intended to cause inflammation and scarring in the loose ligaments, with the goal of making them thicker and more stable. It's a common non-surgical option.

3. Surgical Intervention (A Last Resort for Severe Cases)

• Occipito-Cervical Fusion (OCF): For a small subset of people with severe, debilitating instability that doesn't respond to conservative care, fusion surgery may be an option. This is a major surgery that permanently stabilizes the bones with rods and screws. While it can be life-changing and alleviate brainstem compression, it is not a cure for EDS. Recovery is long, and the systemic nature of the condition means other symptoms may persist. The decision to pursue surgery is profound and requires extensive consultation with a highly experienced surgical team.

The Takeaway: You’re Not Imagining This

If you live with hypermobility and experience “mystery symptoms,” you’re not broken, lazy, or imagining things. Your body may simply need more mechanical stability than most doctors realize.

Craniocervical instability isn’t rare in our community—it’s just rarely recognized. Understanding it won’t replace medical advice, but it empowers you to advocate for better care.

Your symptoms deserve to be taken seriously. And your neck deserves more credit than it usually gets.

If you’d like help creating a movement or support plan that fits your nervous system and connective tissue needs, at ParaMotion, we are here to support you.

👉 [Book your Free 15 mn call here!!] — we’ll talk about what’s possible for your body, at your pace.