A Discussion About EDS, POTS, NMH and VVS

Learn more about Ehlers Danlos Syndrome, Dysautonomia (Postural Orthostatic Tachycardia Syndrome as well as Neurally Mediated Hypotension ‘NMH’ which is also known as Neurocardiogenic Syncope ‘NCS’ or Vasovagal Syncope ‘VVS’), and other spine disorders.

“This blog is about disability and ability. It’s about the ups and downs of living with a range of painful and very limiting conditions. It is about finding new pathways. It is also about grief and getting a little pissed off now and then, but it is also always about hope.

Below, I list my major contenders of the moment…it is a long list, I know. Most things are interrelated, or one is caused by another. I am a comorbid soup of medical zebra diagnostics.

I don’t look sick. At least, most of the time. Catch me in the midst of an MCAD attack, and I look like an embarrassed lobster with a horrendous sunburn. If you happen to see me when I am having apre-syncopal episode, you might notice I look very pale, clammy, blue-lipped and purple-legged.

You may notice me in some oddly contorted position when a joint or two is misbehaving. Of course, with Ehlers Danlos Syndrome, the irony is that I look very young for my 44 years. I was recently asked if I was my son’s wife. I don’t wear makeup except occasionally mascara. EDS is a connective tissue disorder, affecting collagen. So I get to look young and have velvety skin, in exchange for joints that sublux and dislocate at will, early onset arthritis, and the spine of a 90 year old. Oh, and if my neighbor sneezes, I get a bruise.

Define what ‘sick’ looks like? What should it look like? You would not think someone who looks like me has not left home alone for over two years, would you? Perhaps if you see me with dark circles beneath my eyes and hair that hasn’t been near a brush in days…during those dark times when I can barely sit up in bed long enough to eat a few bites…you’d realize illness has many faces.

I digress. On with the current list of Zebra-dom:

Ehlers Danlos Syndrome III (hyper mobile with classic crossover)

Dysautonomia: POTS (postural orthostatic tachycardia syndrome – hyper or combo) and NMH (Neurally Mediated Hypotension), which is also known as NCS (Neurocardiogenic Syncope) and as Vasovagal Syncope— causes extreme tachycardia and bradycardia, syncope and severe per-sycope, blood pressure fluctuations, intermittent diastolic hypertension, severe/critical pulse pressure fluctuations, breathing difficulty, cognitive failure, fall risk, etc.

MCAD (Mast Cell Activation Disorder)

Extreme Chronic Fatigue – CFS/ME

Thoracic Outlet Syndrome (with partial extra cervical rib–enlarged transverse process)

Brachial Neuritis

Hemiplegic Migraines

Optic Migraines

Fibromyalgia

Early Onset Arthritis (probable rheumatoid/psoratic in spine, hands, feet, knees, jaw)

Occipital and Trigeminal Neuralgia

Cervical Lordosis (loss/reversal of normal cervical curvature)

Paresthesia and Neuropathy (quadrilateral)

Coccygodynia

Chronic Cervicogenic Headaches

Chronic Cervical and Thoracic Myofascial Pain Syndrome

Tarlov Cyst in sacral spine (S2)

Degenerative Disc Disease (had laminectomy L5/S1; bulges at C4/5, C5/6, C7 and recurrence at S1)

Failed Back Syndrome

Displacement of cervical disc left c5-6

Cervical Spondylosis with Foraminal Stenosis

Sciatic radiculopathy (S1) / permanent nerve damage (partial paralysis) in right calf/ankle/foot

Lumbar Spondylosis and Lumbago

Cranial Cervical Instability

Cervical osteophytes

Bilateral Radiculitis (upper and lower)

Thoracic/Lumcosacral Neuritis/Radiculitis

Myalgia/Myositis

RLS (restless legs syndrome)

Raynaud’s Syndrome

Sjögren’s syndrome (probable-waiting for biopsy confirmation)

Torn rotator cuff, right shoulder

TMJD

Patellofemoral Syndrome and grade 3 Chondromalacia

Derangement Medial Meniscus

Proprioceptive sensory motor balance deficit

Sacroiliac joint inflammation

Snapping hip syndrome

Trigger finger

Chronic subluxation of multiple joints (EDS)

Tronchanteric Bursitis in both hips

PMDD (premenstrual dysphoric disorder)

Multiple Chemical Sensitivity

IBS (irritable bowel syndrome)

Gastroperisis

Enlarged Gallbladder

Asthma

Probable Vitiligo (loss of pigmentation)

Suspected Mitochondrial Disease

Vocal chord Dysfunction

Central Auditory Processing Disorder

Sensory Integration Disorder

Asperger’s/high functioning Autism

ADHD, OCD, Dysgraphia, Dyscalculia. Prosopagnosia

Hyper vigilance

Adrenaline Surges (due to Dysautonomia)

Photophobia (extreme sensitivity to bright light)

Hypoglycemia

Lyme (not certain it was cured)

Visual Snow and Floaters and loss of depth perception

Intermittent Cognitive Impairment and short term memory difficulty (secondary to Dysautonomia and Hemiplegic Migraine)

Chronic Sinusitis

(and that’s not all, folks!)

ALLERGIES INCLUDE:

NSAIDs

neurontin/gabapentin

mobic/meloxixam

tramadol

toprol/metatoprol

steroids

tape adhesives (even paper tape)

latex

shellfish

most perfumes

fresh grass cuttings

I do not react well to beta blockers due to mast cell disorder

RISKS:

Fall risk

Syncope risk

Bright and/or flashing, odors (perfumes or chemicals), fluorescent lighting, flickering or strobe lights trigger severe Hemiplegic Migraine (with stroke-like symptoms)

severe allergy reaction risk even without allergy trigger due to mast cell disorder

severe tachycardia and bradycardia frequent

severe pulse pressure narrowing

hypoxia risk