Hypermobile Ehlers-Danlos Syndrome (EDS) and Migraine: Understanding the Connection

Hypermobile Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder that can impact various parts of the body, including joints, skin, and blood vessels. This condition also has a significant connection to migraine and other headache disorders.

Here, we explore the symptoms, related conditions, and management of hypermobile EDS, with a focus on its link to migraine.

What is Hypermobile EDS?

Hypermobile EDS is a disorder of the connective tissue, which affects tendons and ligaments. In individuals with this condition, these structures are more elastic than normal, leading to joint instability and pain. Symptoms include:

  • Joint hypermobility: Joints that are more flexible than normal, often leading to dislocations.
  • Chronic pain: Pain throughout the body, particularly in joints.
  • Recurrent joint dislocations: Joints that “pop out” and may need to be manually reset.

Diagnosing Hypermobile EDS

The diagnosis of hypermobile EDS is typically made using the Beighton Criteria, which assess joint hypermobility. Common diagnostic tests include:

  • Thumb and pinky flexibility: Checking if the thumb can touch the forearm or if the pinky bends back more than 90 degrees.
  • Elbow and knee extension: Hyperextension of the elbows or knees.
  • Touching the floor with palms: Keeping the knees straight and placing palms flat on the floor.

Individuals with high scores on these tests, along with other symptoms like joint pain or dislocations, may be diagnosed with hypermobile EDS. However, the condition should be diagnosed by a healthcare provider familiar with the disorder, such as a geneticist.

Related Syndromes and Conditions

People with hypermobile EDS often experience other health conditions, including:

  • Mast Cell Activation Syndrome (MCAS): A condition that causes allergic reactions and symptoms like flushing, hives, and difficulty breathing.
  • Gastrointestinal disorders: Conditions like irritable bowel syndrome (IBS) or reflux are common in people with hypermobile EDS.
  • Fibromyalgia: A chronic pain condition that is more likely to be diagnosed in individuals with hypermobile EDS.

The Connection Between Hypermobile EDS and Migraine

Research has shown that individuals with hypermobile EDS are more likely to experience migraine than the general population. These individuals are also more prone to having frequent and disabling headaches. Some reasons for this connection include:

  • Dysautonomia: An abnormality of the autonomic nervous system, which can predispose individuals to both POTS and migraine.
  • Cervicogenic headache: Headache originating from the neck due to hypermobility in the cervical spine, which is common in people with EDS.
  • Spinal fluid leaks: Individuals with EDS are more prone to spinal fluid leaks, leading to orthostatic headache that worsen when standing and improve when lying down.

Common Headache Disorders in Hypermobile EDS

In addition to migraine, people with hypermobile EDS may experience other types of headaches, including:

  • Cervicogenic headache: These arise from neck issues, such as hypermobility in the cervical spine.

Managing Hypermobile EDS and Migraine

Managing hypermobile EDS often requires a multidisciplinary approach. Common treatments include:

  • Physical therapy: Specialized exercises to strengthen muscles around hypermobile joints.
  • Compression garments: To prevent blood pooling in the legs for individuals with POTS.
  • Medications: These can include muscle relaxants, pain medications, and migraine treatments like topiramate or tricyclic antidepressants.
  • Lifestyle changes: Maintaining a healthy weight, avoiding activities that put stress on the joints, and practicing good posture can help manage symptoms.

Seeking Help for Hypermobile EDS and Migraine

If you suspect you have hypermobile EDS, it is important to seek out a healthcare provider who is familiar with diagnosing and managing the condition. A geneticist or rheumatologist may be able to make the diagnosis and refer you to specialists who can manage related conditions like POTS, mast cell disorders, and chronic pain.

Hypermobile EDS is a complex condition that can have a significant impact on quality of life, particularly for individuals who also experience migraine. With the right treatment plan and support, it is possible to manage both conditions effectively and improve overall well-being. If you believe you may have hypermobile EDS, consult with a healthcare provider for evaluation and personalized care.

This resource is based on HeadWise Episode 21, Hypermobile Ehlers Danlos Syndrome and Migraine with Vince Martin, MD
Published, 07/02/2019

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