On this page, I’ve collected all the postings about EDS and headaches as of January 2020:
People with EDS have loose tissues and joints, which makes us prone to two kinds of headaches:
- Intracranial hypertension or hypotension, caused by high pressure when the free flow of intracranial spinal fluid is blocked or low pressure from a slight leak its containing membrane, the dura mater.
From Wikipedia: Dura mater is a thick membrane made of dense irregular connective tissue that surrounds the brain and spinal cord. It is the outermost of the three layers of membrane called the meninges that protect the central nervous system. The dura surrounds the brain and the spinal cord and is responsible for keeping in the cerebrospinal fluid.
- Cervicogenic headaches caused by hypermobility in the cervical area of the spine.
Connective tissue, EDS, and head and cervical pain. – Feb 2015
Connective tissue, Ehlers-Danlos syndrome(s), and head and cervical pain. – PubMed – NCBI
Joint Hypermobility and Headache – 2 parts
- Joint hypermobility and headache: understanding the glue that binds the two together–part 1. – PubMed – NCBI | Headache. 2014 Sep
- Joint hypermobility and headache: the glue that binds the two together–part 2. PubMed – NCBI | Headache. 2014 Sep
The looseness in the joints of our neck can cause problems:
Cranio-cervical Instability with EDS Henderson (expert specializing in EDS) – 2016
Dr. Henderson explains the technical aspects of instability between the skull and upper spine. He makes clear that diagnosis requires imaging performed in flexion-extension, not static pictures, though these are non-standard diagnostic views.
What Are Cervicogenic Headaches? – Good introduction to subject – (What Are Cervicogenic Headaches? – Pain Doctor.)
- What is Craniocervical Instability? – (What is Craniocervical Instability? – The Pain Relief Foundation)
- Cervicogenic Headache & Cervical Instability – good diagrams and explanation Cervicogenic Headache – Physiopedia)
- Neurological and Spinal Manifestations of EDS (Neurological and spinal manifestations of the Ehlers–Danlos syndromes – Henderson – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library – Feb 2017)
- Cervicogenic Headache: A Review of Diagnostic and Treatment Strategies
Exercises to prevent this type of headache:
- Exercises to Prevent Cervicogenic Headaches – diagrams and videos
- Overcoming Neck Pain with Exercises – Rochelle Cocco has created a whole website describing exactly what she learned and did to surmount her own crippling neck pain.
- Manipulation and mobilization for neck pain
- DIY Help for Cervicogenic Headaches – very simple, gentle neck exercises that can prevent at least some cervicogenic headaches
Pain can spread into the head, neck, and face:
Cervical Muscle Dysfunction and Head/Neck/Face Pain – (Deep Cervical Muscle Dysfunction and Head/Neck/Face Pain | Jan 2009)
2015 The March 2015 issue of American Journal of Medical Genetics, a peer-reviewed medical journal dealing with human genetics, is devoted to EDS/JHS and two articles are relevant to EDS headaches:
- Introduction and outline: Generalized joint hypermobility, joint hypermobility syndrome and Ehlers-Danlos syndrome, hypermobility type. – PubMed – NCBI – Mar 2015
- Connective tissue, Ehlers-Danlos syndrome(s), and head and cervical pain. – PubMed – NCBI – Mar 2015
Cerebrospinal Pressure Headaches
Both too low or too high pressure of the circulating Cerebral-Spinal Fluid (CSF) within its connective tissue sac (dura mater) can cause headaches:
Flabby tissues near or in transport conduits like the dura mater can destabilize the pressure of the fluid surrounding the brain:
- Editor’s Memo: Spinal Fluid Flow and Pain Management – practicalpainmanagement.com – Editor’s Memo June 2017 By Forest Tennant, MD, DrPH
- Craniospinal Hydrodynamics – 2015 (The Role of the Craniocervical Junction in Craniospinal Hydrodynamics and Neurodegenerative Conditions – Free full-text PMC article)
- Ehlers-Danlos and Cerebrospinal Fluid Problems – 2014
Here are 2 articles from the http://www.upright-health.com/ that explain how the connective tissue laxity of EDS can lead to disturbances in CSF volume, pressure, and circulation. (Ehlers-Danlos, CSF and MS, The Pituitary Gland and Hypothlamus)
- Homeostasis-related Headaches – 2017 (Homeostasis-related Headaches)
Headaches from spontaneous spinal CSF leaks and intracranial hypotension
Headache: Intracranial Hypertension – Pseudotumor Cerebri – Sep 2014 – Extremely long, sparsely annotated
Adult Idiopathic Intracranial Hypertension – free full-text – February 2016 – good diagrams of production and reduction of CSF (Evolving evidence in adult idiopathic intracranial hypertension: pathophysiology and management – J Neurol Neurosurg Psychiatry
The diagnosis and management of idiopathic intracranial hypertension – 2016 – just the beginning of a very long and detailed full-text article (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4916517/)
Headache Research: Idiopathic Intracranial Hypertension – 2016
I created a search on PubMed to find the most recent applicable articles on Intracranial Hypertension, which had been causing my horribly painful headaches.
I can be certain that my headache was from high pressure (Intracranial Hypertension) because lying down or causing any additional pressure against my head (from a pillow) increased the pain dramatically. I had to wait for my pain medication to work sitting upright in a chair with only the slightest leaning against the headrest.
However, I realize my more recent headaches are more likely to be cervicogenic. (see section above)
I’m posting this collection of PubMed scientific articles about Intracranial Hypertension in case anyone else is interested. I chose most of them to be free full text, but a few are just abstracts.
- Endovascular Treatment of Venous Sinus Stenosis in Idiopathic Intracranial Hypertension: Complications, Neurological Outcomes, and Radiographic Results.
- Brain Slump Caused by Jugular Venous Stenoses Treated by Stenting: A Hypothesis to Link Spontaneous Intracranial Hypotension with Idiopathic Intracranial Hypertension.
When I was having these headaches that lasted from 3-6 days (before my pain became extreme in multiple areas) I noticed how incredibly disabling they became. It felt like even “thinking” hurt and the pain’s unvarying intensity was crazy-making.
I noticed how incredibly disabling they became, so I’m glad this is a scientifically validated issue, not just a personal quirk.
Both cervicogenic and hyper/hypotension headaches are caused by our unstable and loose joints in the cervical spine (from EDS):
- The Role of the Craniocervical Junction in Craniospinal Hydrodynamics and Neurodegenerative Conditions.
- Neuromodulation as a last resort option in the treatment of chronic daily headaches in patients with idiopathic intracranial hypertension.
- Understanding idiopathic intracranial hypertension: mechanisms, management, and future directions. – 2016
- A practical approach to, diagnosis, assessment and management of idiopathic intracranial hypertension.
- The idiopathic intracranial hypertension treatment trial: clinical profile at baseline. – 2014
- Cognitive function in idiopathic intracranial hypertension: a prospective case-control study. – 2014
Ironically, the raised Inter-Cranial Pressure of Intracranial Hypertension can itself cause a leak, which then results in Intracranial Hypotension:
You can see all posts about headaches by using the tag: