Causes and Prevalence of Vertigo in HEDS

Vertigo is a disorienting sensation that can severely affect daily life. For individuals with Hypermobile Ehlers-Danlos Syndrome (HEDS), vertigo is a common but often misunderstood symptom.

Understanding these factors can help patients and caregivers better manage symptoms and seek appropriate care.

What Is Vertigo and How Does It Relate to HEDS?

Vertigo is the feeling that you or your surroundings are spinning or moving when they are not. It differs from general dizziness because it involves a false sense of motion. People with vertigo often experience nausea, balance problems, and difficulty focusing.

HEDS is a connective tissue disorder characterized by joint hypermobility, skin elasticity, and tissue fragility. It affects the body's collagen, which plays a crucial role in maintaining structural integrity. Because collagen is present in many parts of the body, including the inner ear and blood vessels, HEDS can lead to symptoms beyond joint issues, including vertigo.

Causes of Vertigo in HEDS

Several factors contribute to vertigo in people with HEDS. These causes often overlap and can make diagnosis and treatment challenging.

1. Inner Ear Dysfunction

The inner ear contains structures responsible for balance and spatial orientation. In HEDS, the connective tissue supporting these structures may be weaker or more elastic than normal. This can lead to instability in the vestibular system, causing vertigo.

For example, the otolith organs, which detect linear movements, may not function properly if their supporting tissues are lax. This can result in false signals being sent to the brain, triggering vertigo episodes.

2. Cervical Spine Instability

The neck plays a vital role in balance by providing sensory input to the brain. In HEDS, hypermobility can cause instability in the cervical spine. This instability may irritate nerves or disrupt blood flow to the brainstem, leading to vertigo.

Patients often report neck pain or stiffness alongside vertigo, suggesting a link between cervical issues and balance problems.

3. Autonomic Nervous System Dysfunction

Many people with HEDS experience dysautonomia, a disorder of the autonomic nervous system. This system controls involuntary functions like heart rate and blood pressure. Dysautonomia can cause blood pressure fluctuations and reduced blood flow to the brain, resulting in dizziness and vertigo.

Postural Orthostatic Tachycardia Syndrome (POTS), a common form of dysautonomia in HEDS, often includes vertigo as a symptom when standing or changing positions.

4. Migraines and Vestibular Migraine

Migraines are more common in individuals with HEDS. Vestibular migraines specifically affect balance and can cause vertigo without a headache. The exact mechanism is unclear, but it may involve abnormal brain processing of sensory information.

People with HEDS who experience frequent migraines should consider vestibular migraine as a possible cause of vertigo.

How Common Is Vertigo in HEDS?

Research on the prevalence of vertigo in HEDS is still emerging, but available studies and patient reports suggest it is a frequent symptom.

• A survey of patients with hypermobile Ehlers-Danlos Syndrome found that over 50% reported experiencing vertigo or balance problems.

• Among those with dysautonomia related to HEDS, vertigo was reported in up to 70% of cases.

• Vestibular migraine, which can cause vertigo, occurs more often in people with HEDS compared to the general population.

  
  

These numbers highlight that vertigo is not a rare complaint but a significant issue affecting quality of life for many with HEDS.

Managing Vertigo in HEDS

Addressing vertigo in HEDS requires a comprehensive approach tailored to the underlying causes.

Medical Evaluation

A thorough medical evaluation is essential. This may include:

• Vestibular testing to assess inner ear function

• Imaging studies to check cervical spine stability

• Autonomic testing for dysautonomia

• Neurological evaluation for migraines

  
  

Treatment Options

Treatment depends on the identified cause but may involve:

• Vestibular rehabilitation therapy to improve balance and reduce vertigo episodes

• Physical therapy focusing on neck stability and posture

• Medications for migraines or dysautonomia symptoms

• Lifestyle adjustments such as hydration, salt intake, and avoiding triggers

  
  

Patients should work closely with healthcare providers familiar with HEDS to develop an effective plan.

Living with Vertigo and HEDS

Vertigo can be unpredictable and disabling. People with HEDS often find it helpful to:

• Keep a symptom diary to identify triggers

• Use assistive devices when needed for safety

• Practice stress management techniques, as stress can worsen symptoms

• Connect with support groups for shared experiences and advice

  
  

Understanding vertigo’s connection to HEDS empowers patients to seek targeted care and improve their daily functioning.

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