Headaches in Ehlers-Danlos Syndrome (EDS): Causes, Types, and Effective Management

Headaches are more than just a minor inconvenience for those living with Ehlers-Danlos Syndrome (EDS). They can be a constant, sometimes debilitating presence in daily life. But have you ever wondered why these headaches are so common in EDS, or why they seem to strike when you least expect it?

Follow along as we explore the different types of headaches often linked to EDS, uncover why they happen, and share actionable strategies for managing them. With the right approach, you don’t have to suffer in silence. Let’s dive in!

Why Are Headaches So Common in EDS?

If you’ve been diagnosed with EDS, you know that your body doesn’t quite operate like everyone else’s. EDS affects connective tissue, which holds everything together—your ligaments, joints, and blood vessels. So, when these tissues aren’t as strong as they should be, it can lead to joint instability, poor posture, and even vascular irregularities. All of this can contribute to the onset of headaches.

But it doesn’t stop there. Are you also dealing with other EDS-related conditions like dysautonomia, POTS (Postural Orthostatic Tachycardia Syndrome), or MCAS (Mast Cell Activation Syndrome)? These conditions often complicate things, making headaches even more common and harder to manage.

Different Types of Headaches in EDS: What Do They Feel Like?

Let’s take a look at some of the most common headaches people with EDS experience. Do any of these sound familiar?

Tension-Type Headaches

• What it feels like: A dull, band-like pressure around your head, often tightening in the neck and shoulders.

• Why it happens: When your muscles fatigue from poor posture and hypermobility, they tense up, causing discomfort.

• What triggers it: Stress, long periods of sitting, or poor ergonomics at your desk.

Migraines

• What it feels like: Throbbing pain, often on one side, and accompanied by nausea, light, and sound sensitivity.

• Why it happens: Vascular instability and dysautonomia can make migraines more likely in those with EDS.

• What triggers it: Dehydration, hormonal changes, certain foods, or stress.

Cervicogenic Headaches

• What it feels like: Pain starting in your neck, radiating up to your head.

• Why it happens: Instability in the cervical spine (especially at the C1-C2 level) can cause nerve irritation, leading to muscle guarding and pain.

• What triggers it: Neck movement or maintaining a fixed posture for too long.

Occipital Neuralgia

• What it feels like: Sharp, shooting pain from the base of your skull to the scalp.

• Why it happens: Irritation or compression of the occipital nerves due to tight muscles or joint instability.

• What triggers it: Neck strain, poor posture, or certain sleeping positions.

Headaches from Craniocervical Instability (CCI)

• What it feels like: Severe pressure-like pain, often worsened by upright posture, along with dizziness or brain fog.

• Why it happens: Lax ligaments in the upper cervical spine can cause brainstem compression, disrupting cerebrospinal fluid (CSF) flow.

• What triggers it: Standing or sitting upright for long periods, physical activity, or certain head positions.

Vestibular Migraines

• What it feels like: Dizziness or vertigo, accompanied by light sensitivity, nausea, and sometimes a mild headache.

• Why it happens: Dysfunction in the central nervous system’s vestibular signals, often worsened by cervical spine instability and autonomic dysfunction.

• What triggers it: Motion, hormonal changes, stress, or flashing lights.

Vestibular Headaches

• What it feels like: A mix of headache and symptoms like vertigo, imbalance, and motion intolerance—without the classic migraine aura.

• Why it happens: Impaired vestibular function due to joint instability or nerve irritation, which is common in EDS.

• What triggers it: Quick head movements, visual stimuli, or prolonged standing.

Ocular Migraines

• What it feels like: Visual disturbances, such as flashing lights or temporary vision loss, sometimes with a mild headache afterward.

• Why it happens: Vascular spasms or issues with the neural pathways involved in vision processing.

• What triggers it: Bright lights, stress, dehydration, or hormonal shifts.

  
  

What’s Really Causing These Headaches?

So, why are these headaches so common in people with EDS? It's more than just joint instability. Here are a few underlying causes that could be at play:

1. Joint Hypermobility and Instability: Lax ligaments in the cervical spine can lead to nerve irritation and muscle compensation, contributing to headaches.

2. Dysautonomia and POTS: These conditions disrupt blood flow regulation, making migraines and headaches more frequent, especially when standing or sitting for long periods.

3. Mast Cell Activation Syndrome (MCAS): Histamine release from mast cells causes vascular changes, which can trigger headache symptoms.

4. Postural Imbalances: Poor posture from joint instability can strain the neck and shoulder muscles, leading to tension and discomfort.

5. Hormonal Fluctuations: For many women, headaches (especially migraines) can worsen with hormonal changes, such as during menstruation or menopause.

6. Sleep Disturbances: If you’re not sleeping well due to pain or autonomic dysfunction, you’re more prone to headaches the next day.

How Are Headaches Diagnosed in EDS?

If you’re dealing with frequent headaches and suspect they might be related to EDS, a proper diagnosis is crucial. It all starts with a comprehensive history—identifying your triggers, how long the headaches last, and what other symptoms you may be experiencing. From there, your provider may complete a variety of exams including the following to set the groundwork for effective management:

• Physical Exam: Your doctor will assess your posture, neck range of motion, muscle imbalances, and neurological function.

• Imaging Tests: MRI, CT scans, and MRA may be used to assess your spine alignment and vascular health.

• Specialist Referrals: Neurologists, cardiologists, and immunologists may be involved in your diagnosis and treatment plan.

Managing EDS-Related Headaches: What Can You Do?

Headaches in EDS require a multidisciplinary approach. The key to managing them lies in finding the right balance of treatments and lifestyle modifications. Here are some strategies to try:

1. Physical Therapy

Postural retraining, strengthening exercises, and Pilates can improve head and neck alignment, reduce strain, and provide long-term relief.

2. Lifestyle Modifications

Staying hydrated, improving sleep hygiene, and adjusting your ergonomics can all help reduce headache frequency.

3. Medications and Supplements

For MCAS, antihistamines and mast cell stabilizers may be beneficial. For migraines, magnesium, riboflavin, and CoQ10 can help reduce symptoms.

4. Advanced Therapies

Dry needling, red light therapy, and manual therapy techniques may provide additional relief.

5. Surgical Considerations

In severe cases of craniocervical instability, surgery may be needed, along with pre- and post-operative physical therapy for recovery.

6. Dietary Considerations for MCAS-Related Headaches

If you have MCAS, adjusting your diet can also play a key role in managing headaches. A gluten-free diet can reduce inflammation, while a low-histamine diet—which eliminates high-histamine foods like aged cheeses, cured meats, and alcohol—can prevent headache triggers. Focus on fresh, minimally processed foods to help lower the risk of flare-ups.

Practical Tips for Daily Headache Management

• Stay Hydrated: Drink electrolyte-rich fluids to prevent POTS-related headaches.

• Practice Good Posture: Keep your head, neck, and shoulders aligned throughout the day.

• Exercise Gently: Focus on strengthening and flexibility exercises to support joint stability.

• Identify Triggers: Track your headaches and figure out what sets them off.

• Prioritize Sleep: Get consistent, quality rest to allow your body to recover.

Headaches in EDS patients are complex but manageable with the right approach. By addressing the root causes and adopting a multidisciplinary treatment plan, patients can significantly reduce the frequency and severity of their headaches. 

Are you ready to take control of your EDS symptoms and manage your headaches more effectively? At Actify PT, we specialize in personalized, holistic care for EDS patients. Reach out to us today to schedule a consultation and find your relief starting today.

Contact us at info@actifypt.com or visit our website at www.actifypt.com.

Stay informed, stay resilient, and take charge of your health!