Headaches and EDS – Common and Painful
Many patients (in some studies over 70%) with EDS develop chronic daily headache (CDH) or headaches more than 15 days per month. Many also reach the criteria for chronic migraine. The question is how much their hEDS/HSD is playing a role in their daily headache pathogenesis. Many patients with hypermobility/EDS have migraines, but in many the reason they chronify to CDH is because of the upper cervical facet and even neck bone (C1-2) irritation they have developed from their hypermobility syndrome, plus/minus any past head or neck traumas (including intubations for surgery), which exacerbates this inflammation. The trigeminal nerve which is the main cranial nerve which causes head pain has its primary nucleus within the brainstem and upper cervical spine (c2) - called the “Trigemino-Cervical Complex”. Thus, anything irritating the upper cervical spine can cause a headache including a migraine-like headache. hEDS/HSD patients are also more at risk for spinal fluid leaks, Chiari malformations and arterial dissections which can also cause daily headache issues. Finally, they may also be hyperimmune so they can develop worsening head pain syndromes after viral infections, vaccines and during times of high stress. A complete evaluation for underlying secondary causes of headache is necessary for EDS patients and this can include a brain MRI with contrast and imaging of the brain and neck vessels. Fortunately, here at Mayo Clinic we have a Headache Clinic as a resource for our EDS Clinic consisting of a team of expert neurologists experienced in managing all types of headaches in patients with hEDS/EDS. So, talk to your doctor, see if you need further evaluation of your headaches. It may save you a great deal of pain.
Do you suffer from Headaches? What has your experience been like? Share in the comment section below!
Author: Todd Rozen, MD