Compassionate Marijuana Use

Hello Dear readers!

I am so sorry for being MIA, but as most of you know, Chiari and EDS can be horribly unpredictable. I haven’t slept or really gotten any rest in about a week. Haven’t been able to eat much due to nausea ect. I did want to share something that I and I know many of you in the Chiari/EDS community have been championing for, it looks like the state of Pennsylvania is going to pass the Compassionate Marijuana Use bill.

Now, While Chiari/EDS aren’t specified on the bill, traumatic brain injury and chronic pain ARE included, which is huge! At the same time, we can submit a petition starting in July 2017 to have other conditions included. This is something I will be working very hard on in the next year and a half to make sure all of us who need treatment can get it, and hopefully expand the bill into other states.

Here is the bill.

Its a little difficult to read through, but you get the idea.

What do you think about this idea readers? Are you on board with marijuana use for pain control?

I am interested to see what the community thinks about this topic!


Look forward to hearing from you community!


Stay Positive!



Comorbidities with EDS

Comorbidities with EDS



  • Fibromyalgia
  • Chronic fatigue, often diagnosed as CFS/ME
  • Chronic Pain of ALL kinds, including RSD/CRPS, arachnoiditis, neuropathies, radiculopathy, neuralgia, fibromyalgia, etc. often invisible on scans
  • MCAD (Mastocytosis or the newly recognized Mast Cell Activation Syndrome aka MCAS – ICD-10 code to come soon hopefully in 2014)
  • Fibromyscular dysplasia (deformity of the arteries, especially leading to the kidneys)
  • Autism Spectrum Disorders (all levels) and related disorders (OCD, ADHD, SPD)
  • Mood disorders, especially anxiety and depression (likely organic in origin and/or secondary with ASD)
  • Thyroid issues (high and low, often auto-immune despite normal TSH “levels”)
  • MS and other auto-immune disorders (RA, Sjogren’s, Lupus, Ankylosing Spondylitis, OA, more)
  • Arthritis of all kinds, especially early onset Oestoarthritis in the spine, neck and hands, but RA common also (really AI also)
  • Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)
  • Incontinence at any age (often from occult tethered cord and/or MCAD or allergy induced)
  • Frequent (seemingly idiopathic) nausea and vomiting (may be from impinged vagus nerve/MCAD/hiatal hernia/gastroparesis/Chiari)
  • Dysautonomia of all kinds, most notably poor temperature and BP regulation (high or low, see POTS below)
  • Raynaud’s phenomon (blood vessel constriction from cold, stress) pronounced “ray-noe’s”) – a form of dysautonomia
  • POTS (Postural Orthostatic Tachycardia Syndrome) – a subset of dysautonomia involving BP drops and syncope (fainting)
  • Hyperadrenergic POTS (aka HyperPOTS) – a subtype of POTS involving more variable BP and adrenaline responses
  • NMH (Neurally Mediated Hypotension) – another form of dysautonomia affecting BP
  • Livedo Reticularis (purplish/white “mottling” on skin surface from likely small capillary spasming)
  • Frequent joint dislocations and subluxations (partial dislocations) or being so-called “double-jointed
  • Mitochondrial disorders and deficiencies
  • Kidney trouble including diabetes insipidus
  • Diabetes miellitus and Metabolic X syndrome
  • Sensory Processing Disorders
  • Tinnitus (ringing in the ears)
  • Insomnia (trouble falling and staying asleep, multiple causes in the EDS patient including pain and hyperadrenergia)
  • Sleep apnea, both obstructive airway issues and Central Nervous System (CNS) Apnea (neurologic in origin requiring a sort of breathing “pace maker”)
  • Cranio-cervical settling (which may cause the CNS Apnea) and attendant neuropathic issues and glaucoma
  • Hypotonia (unusually weak muscles despite “training”) sometimes presenting as “floppy babies”
  • Syncope and pre-syncope (fainting and near fainting) and unusually low BP
  • Dizzyness (with or without syncope)
  • Common Variable Immune Deficiency (CVID) of all kinds leaving us prone to frequent & worsening recurrent infections of all kinds, especially respiratory & UTI’s
  • Interstitial cystitis
  • LymphedemaEdema and angioedema (the latter comes with MCAD triggering usually)
  • Lipoedema (not the same as lymphedema, also spelled “lipedema” in US) an adipose (fat) tissue disorder causing unavoidable weight gain
  • Endometriosis
  • Tendonitis and bursitis of all kinds (aka “soft tissue rheumatism”)
  • Keratoconus or thinning /”pointy” corneas
  • Uveitis (inflammation of hte uvea of the eye, common with ankylosing spondylitis)
  • Varicose and spider veins, often early onset
  • Phlebitis
  • Migraines and headaches of ALL kinds and durations, (often driven by hydrocephalus from MCAD)
  • Food and drug allergies and sensitivities with a lot of paradoxic and unexpected super sensitive reactions
  • Bleeding disorders including Von Willebrand’s
  • Strokes
  • Mitral valve prolapse
  • Aneurysms of all kinds, anywhere
  • Easy bruising often from no apparent cause or injury
  • GERD (weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in resopnse to histamine from food reactions)
  • Gastroparesis (slow stomach emptying) and dysmotility (poor digestive movement) beyond just constipation and IBS
  • Chiari malformation, including occult (hidden) Chiari aka “Chiari Zero” formation (“saggy” hind brain, often protruding through the back skull, but not always)
  • Tethered cord
  • Syringomyelia or “syrinx formation” in the spinal cord (may be caused by long term hydrocephalus)
  • Spondylolysthesis, spondylolisis (misalignment of the spinal vertebrae in various directions – front -to-back, side-to-side)
  • Cranial cervical instability, esp C1-C2 “owl turns” and “bobble-head” issues (trouble keeping head on neck, literally, with resulting neurologic issues)
  • Thoracic outlet syndrome, brachial outlet syndrome
  • Seizure disorders and epilepsy
  • Fallen arches (pes planus)
  • Sciatica
  • Bilateral hip dysplasia (ability to “pop” – aka sublux – hips out and back in easily, which should be avoided!)
  • Cerebral Spinal Fluid (CSF) leaks including CSF rhinorrhea, CSF otorrhea (CSF leaks out nose and ears) or anywhere along the dura (lining of spinal column & brain)
  • Celiac disease and all forms of gluten sensitivity
  • Malabsorption and malnutrition and nutritional deficiencies despite diet and even supplementation sometimes. (Poor absorbption).
  • Electrolyte imbalances (often low potassium)
  • Osteopoenia (low bone density) and osteoporosis (brittle bones), often early onset
  • Scoliosis (deformity of spinal curve) of all kinds including kyphosis (aka “roundback”, forward bent spine)
  • Hiatal hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)
  • Costochondritis (pain at front rib attachment point to sternum)
  • Chondromalacia (cartilage loss) of all kinds, especially patellae (loss of cartilage in the knees, but can occur elsewhere, e.g. hips)
  • Frozen shoulder
  • Petechiae (dark purplish spots, essentially flat blood blisters under the skin, common in those with MCAD with high heparin levels)
  • Metal and other environmental allergies, especially nickel sensitivity (ELISA testing often helpful, pre-test all implant materials)
  • Diastasis recti, (splitting of abdominal wall along the midline) even in males and unpregnant females
  • Striae aka “stretch marks” even in males and young (prepubescent) females (i.e. not always associated with pregnancy!)
  • Strabismus (crossed eyes) or wandering eyes from likely weak eye ligaments
  • Bruxism (jaw clenching, tooth grinding)
  • TMJ pain and issues, subluxations and dislocations (Temporo-mandibular joint syndrome, jaw alignment trouble)
  • Restless Leg Syndrome (RLS) and leg cramps (often eased by increased magnesium)
  • Neuromas in the feet
  • Plantar Fasciitis
  • Chronically low Vitamin D and B12 levels (caution urged for those with MTHFR mutations with the latter, may need a different form of Vit B)
  • Weak or crowded teeth, many need early or partial dentures
  • Urticaria (hives) and Urticaria Pigmentosa (persistant hive-like patches, part of MCAD above)
  • Hair loss early, and even in women, especially those with signs of MCAD or iron imbalances
  • Deviated septum (misaligned nasal cartilage)
  • Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngial tissues
  • Esophageal spasms (can extend to anywhere along GI tract also)
  • Skin tears or rips, trouble suturing, would dehiscence (trouble healing post surgery, especially soft inner tissues)
  • Liver problems, including fatty liver and lesions, enlarged liver
  • Enlarged gallbladder & spleen, appendicitis (may be MCAD driven)
  • Vocal cord dysfunction
  • Hearing loss from a variety of causes, some bio-mechanical, others neurologic
  • Diverticulitis and diverticulosis
  • Crohn’s and colitis
  • Leaky gut syndrome
  • Retinal detachment and tears (rips)
  • Keratoconus (“pointy”, droopy corneas)
  •  Dry eyes and blepharitis (bacterial eyelid infections), as well as retinal tears and more
Not Today.

Not Today.

Hello my dear readers.

This will be a very short post. I am not doing well physically or emotionally. Today was an especially rough day, but I wanted to share a quick post with you. Please go read them. They are enlightening.

I will be writing a very important blog post this weekend for a dear new friend Cat. She lives in Australia, and is struggling to come over here to the USA to have her THIRD brain surgery.

Thank you all for your kind words, love, and support. I will be back with you all soon!


Stay Positive



A letter from a doctor to those with chronic diseases

Invisibly Ill