Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Cranial Instability & Cranial Settling

Ehlers-Danlos & Cervical Cranial Instability (CCI)

I've discovered it is very hard to find information on CCI.  I have found this information on Kristen's blog, Cure for Chiari and  This is a short list of the common symptoms for CCI:

  • Occipital Headache, especially at the occiput (back of the head), often described as hauling or burning
  • Sore neck
  • Facial pain and tingling or extremities
  • Gagging
  • Low Blood Pressure
  • Tachycardia Arrhythmia
  • Postural Orthostatic Tachycardia Syndrome
  • Breathing Problems
  • Tingling in hands and feet
  • Numbness in arms and legs
  • Arm and leg weakness
  • Hyperactive Reflexes
  • Dysesthesia
  • Lateral Nystagmus (involuntary rapid movement of the eyeball)
  • Poor Temperature Control
  • Severe Sleep Apnea
  • attention disorders
  • Memory disorders, Weakness of memory
  • palsy
  • vertigo 
  • balance disorders, stumbling, problems coordinating walking, problems of coordination of hands and arms
  • visual problems (seeing stars, reduction of the visual field)
  • tinnitus (ringing in the ears)
  • pain in the following areas: the mandibular articulations, ears, and eyes
  • Often the symptoms are accompanied by severe drowsiness / stupor and agitation, vegetative faults, esp. of the cardio-vascular system: unsteady erratic pulse, tachycardia,
  • In some cases: vigilance is (extremely) reduced, consciousness disorders (patients tell, they are not really awake, like a hit fly, no more in this world living, in a diffuse world, anything is unreal, I am living like in a dream, ...) - reaching from fatigue over somnolence to comatose states.
  • disturbed, changed or reduced self-perception
  • breathing disorders, autoregulation of breathing defective
  • nightly scaring (waking up, not able to breath, to see, to move, in some cases completely blindness (for a period of time) - this sometimes with great anxiety to die
Mostly this disorders are not provocable, because patients may not actively reduce the tonus of the neck muscles in such a manner that instability symptoms get visible. Therefore x-raying will be almost without any success.

**A lot of the Chiari symptoms can be seen with CCI as well.

Now I want to present a more complete list from again.

  • Headaches and migraine-like pain
  • neck and scalp tension
  • pressure and pain behind eyes
  • blurring of vision
  • dizziness
  • light-headedness
  • fainting
  • facial pain and numbness
  • ringing in ears
  • ear pain
  • jaw pain
  • reoccurring sore throat
  • nasal congestion
  • sinus trouble
  • loss of co-ordination
  • disorientation
  • symptoms of dyslexia
  • generalized malaise
  • childhood fevers
  • vertebral artery insufficiency
  • insomnia (loss of sleep)
  • problems with memory
  • depression
  • irritability
  • loss of concentration
  • symptoms of allergies and hay fever
  • weakness in legs
  • difficult breathing
  • heart arrythmias
  • functional heart conditions
  • asthma and allied conditions
  • certain types of arm pain, angina-like pain
  • numbness in legs and feet
  • leg pains
  • bed wetting in children
  • abdominal cramps
  • fatigue, esp. when standing
  • urinary difficulties
  • fatigue and leg weakness
  • Pain and stiffness in the neck, pain in the shoulder, arm and hand
  • tennis elbow-like pain
  • hand and finger swelling
  • numbness and tingling in hands and fingers
  • pain of bursitis in shoulders, wasting of arm and shoulder muscles, reduced neck/shoulder movement
  • difficulty swallowing
  • nervousness
  • neck tension
  • chest pain
  • cold hands, poor circulation in the arms, twinges of pain which "seem to go away"
  • loss of power and grip strength
  • whiplash
  • certain thyroid problems
  • speech difficulties
  • hormonal balance issues
  • Shortness of breath 
  • chest pain and pressure 
  • difficult breathing 
  • pain between shoulder blades 
  • rib pains 
  • heart arrythmias 
  • bronchitis and related chest conditions 
  • respiratory difficulties 
  • reoccurring upper respiratory tract infections 
  • functional heart conditions 
  • asthma and allied conditions (especially in children) 
  • certain types of arm pain 
  • angina-like pain
  • Pain between shoulder blades 
  • chest pain and pain in ribs 
  • liver and gall bladder trouble 
  • jaundice in infants 
  • stomach trouble 
  • chronic indigestion 
  • dyspepsia
  • heartburn 
  • abdominal bloating 
  • pancreas malfunction hypoglycemia 
  • ulcers 
  • gastritis 
  • abdominal pain 
  • trouble digesting certain foods 
  • allergies 
  • lowered resistance acne and other skin disturbances 
  • abnormal blood pressure 
  • sweet tooth cravings
  • Urinary problems 
  • constipation 
  • ulcerative intestinal conditions 
  • spastic colon 
  • lazy colon 
  • adrenal trouble 
  • appendicitis-like pain 
  • abdominal bloating and pain 
  • gas pains 
  • frequent sighing 
  • diarrhea 
  • fluid retention 
  • allergies 
  • fatigue
  • mid-back pain

Ehlers-Danlos & Cranial Settling

The websites and are  excellent websites describing EDS and Cranial Settling.  Cranial Settling happens when the head of an EDS patient is not supported enough, causing it to be "wobbly."  Cranio-Spinal Instability (CSI) is the result of the neck and skull not stable.  CSI and CCI are similar, in that both disorders are caused from lack of support in the head and neck.  It is easy to mix the two up, but the main difference is that the CCI has to do with the bones of the neck and skull instability while CSI has to do with the bones of the neck and skull instability, tissues sagging from the instability, and possibly blockage of spinal column fluid.

In severe cases of CSI Cranial Settling may occur.  Cranial Settling sounds awful and is.

Page in progress...more to come soon.


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