Announcing a new Reference Page with all the articles I researched over the years to find the cause of my own headaches:
“Headaches Related to EDS“
I discovered that EDS can lead to 3 kinds of headaches:
- Intracranial Hypotension from cerebrospinal fluid leaks,
- Intracranial Hypertension from interference with the circulation of cerebrospinal fluid, and
- Cervicogenic Headaches from pinched joints in the neck
The best part is that I found simple isometric exercises to strengthen my neck and prevent both types of headaches, either by maintaining the strength of these muscles with regular neck exercises or by doing these exercises at the first sign of pain.
Using my neck muscles in these exercises seems to realign the vertebrae of my cervical spine (I can hear it “crack” sometimes and that usually eases the muscle spasm), I feel like it removes any “kinks” or blockages interfering with the Craniospinal Hydrodynamics of the fluid around my brain.
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
This research review makes it very clear that people with EDS suffer a great deal of pain from the neck up, that EDS is a physically disabling condition, and that its effects are multi-systemic.
This is the article I will present to the new doctor that is taking over from the wonderful doctor who has been prescribing me sufficient opioid pain medication for the last 10 years. They work in the same medical group and this new doctor has on occasion refilled my opioid prescriptions when my regular doctor wasn’t available, so I hope she will continue doing so.
Just reading this review crushes any hope I’ve had of ever “getting better” because there are so many physical issues that arise when our body structures are held together (or rather, not held together) by defective connective tissue.
Overcoming Chronic Neck Pain: Postural Causes and A Unique Exercise Fix | Home – http://fixtheneck.com
I’ve learned that some of my pain of musculoskeletal origin can be ameliorated by strengthening weaker muscles and aligning my spine better.
For years, I had a severe problem with recurring cervicogenic headaches, which were probably caused by a pinch somewhere in my hypermobile cervical spine. But after doing Isometric exercises with my neck my vertebrae realign properly and I don’t get the headaches anymore.
This author, Rochelle Cocco has created a whole website describing exactly what she learned and did to surmount her own crippling neck pain. Continue reading
New Type of Chronic Daily Headache Described in Case Series – MPR – Diana Ernst, RPh – September 26, 2017
A case series published in the Journal of Women’s Health describes a new subtype of chronic daily headache that appears to be associated with elevated cerebrospinal fluid (CSF) pressure.
The eight women included in this review
- were older (average age of onset: 57 years),
- were mostly overweight or obese (6 out of 8), had a
- history of episodic migraine (migraines were well-controlled or had ceased prior to new headache onset), and
- were either perimenopausal or in menopause. Continue reading
Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS? – Health Rising by Caroline Christian | Dec 1, 2017
I saw Dr. Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below).
I have ME/CFS and hypermobile Ehler-Danlos Syndrome (hEDS) and was referred to him by my autonomic specialist at Stanford because my orthostatic intolerance (OI) picture is a bit muddy and because hEDS, a connective tissue disease, is a risk factor and can cause aneurysms and spontaneous leaks from the dural sac (the tough outermost membrane of the spinal cord and brain). Continue reading
Cervicogenic Headache – Physiopedia
Due to our overly-stretchable tendons and ligaments, we with EDS often get these headaches that arise from misalignments of our upper cervical spine.
Cervicogenic headache is a chronic headache that arises from the atlanto-occipital and upper cervical joints and perceived in one or more regions of the head and/or face
Editor’s Memo: Spinal Fluid Flow and Pain Management – practicalpainmanagement.com – Editor’s Memo June 2017 By Forest Tennant, MD, DrPH
Spinal fluid flow (SFF) [also called cerebrospinal fluid, CSF] has been a silent subject in pain management.
This has to change.
For a while, pain practitioners have unknowingly been utilizing a variety of measures that likely enhance SFF.
Progressive research that involves SFF has shown how it occurs, how it may promote pain, and how it may impede treatment efforts. Continue reading
Both I and my mother with EDS have found that our occasional episodes of severe headaches are related to instability problems in our cervical spines. (See What Are Cervicogenic Headaches?)
Misalignment of the cervical vertebrae can cause pain from the neck up the back of the head and even into the forehead. So it makes sense that:
“muscle strengthening of the deep neck flexors may ameliorate forward head posture, cervicogenic headache, and tension-type headaches.”
(from Cervical Muscle Dysfunction and Head/Neck/Face Pain)
This set of isometric neck exercises can be done sitting in a chair and are much milder than the previous ones I posted (Exercises to Prevent Cervicogenic Headaches). I had my first success with this set of exercises, and they relieved my mother’s headaches too.
Cervicogenic Headache Exercises – Treat That Killer Headache With These Exercises | The Prehab Guys
My mother and I have both found that neck-strengthening exercises reduce the frequency of our headaches, so I highly recommend these methods.
Anatomy and Physiology of a Cervicogenic Headache
What distinguishes a cervicogenic headache from your more classic headaches like migraines or tension type headaches are that cervicogenic headaches are actually caused from dysfunction in your neck.
Neck Pain and Ehlers-Danlos Syndrome | Pain Neck Blog – PainNeck.Com by LMatthews – December 12, 2011
Ehlers-Danlos Syndrome may be the cause of neck pain in some patients and at least three of the most common types of the disorder can contribute to chronic pain in the neck.
ligaments, blood vessels, joints, internal organs, skin, and the inter-cellular matrix are affected by the defect leading to a variety of symptoms.
it is well understood that individual experiences of the disease are extremely variable. Continue reading