Thanks for responding!
I was hoping to get a prescription for a cervical collar, but can’t get anyone to do that.
I feel like I have a lot of the symptoms of inter cranial pressure, but I’m missing some, like urinary incontinence.
Made some quick bullet lists:
EDS (diagnosed as hypermobile)
• 9/9 of Beighton score
• Extreme fatigue
• Muscoskeletal pain
• Thin stretchy hyperextensible skin
• Skin that sags / chicken skin
• No atrophic scarring
• Mitral Valve prolapse diagnosed at 16, no murmur
POTS (diagnosed)
• Body temperature cold, not hot ; Resting heart rate low (45-50) ; Blood pressure low
• Large pupils
• Slow gut motility and constipation
• Florinef made things WORSE, plus acne worsened considerably
Hydrocephalus???(not diagnosed)
• Pressure and pain in neck and back of head and cervical spine
• Pain can be fine in the morning, but pressure develops throughout the day – drugs do not work – (only thing that helps is to apply
heavy pressure massage up the cervical and bottom half of head)
• Nausea and extreme discomfort as a passenger in a car
• Car sickness and vomiting as a child
• No diarrhea, no acid reflux
• Irritability
• Feelings of being overwhelmed
• Change in personality
• Problems with attention
• Polyuria about once a month, but not incontinence
• Impaired vision (from POTs) – partial to complete blackout from squatting, lying down, sitting to standing
• Issues with memory, concentration and other thinking skills that do affect job performance
• Head can feel very heavy – too heavy to lift up
• No loss of bladder control
• Went to see TMJ specialist – CT scan showed extremely narrow upper air passageway (don’t know what this means, if anything)
Mastyocytosis??? (not diagnosed)
• But baseline tryptase low, not high
• Flushing on chest (will attach photo)
• No flushing on face
• Frequent urination once or twice per month, not constant and not incontinence
• No anaphylactic shock
Mental symptoms (symptoms intermittent, unpredictable, feel pretty extreme)
• Irritability
• Mood swings
• Extreme anxiety
• Mental clouding
• Inattention
• Depression
• Insomnia (since childhood)
• Overwhelmed feelings/Nerves shot
Abnormal lab results
• Consistently low platelets (genetic consult suggests neutropenia as the cause)
• Consistently low neutrophils
• High aldosterone/renin ratio (x 2)
• Osteopenia, but only in neck
• Low resting heart rate
• Low blood pressure
• Low phosphate
• Elevated norepinephrine (tested after 7 days off Adderall)
Drug history (some of the more memorable ones)
• Adderall has worked to cut down fatigue
• Complete symptom relief with Cymbalta but it only lasted 10 days
• Glutocoritcoids (Florinef) did not help POTs/ Neck pain pressure worse
• Wellbrutin – terrible response
• Seroquel – blackouts at very low dosage
• No positive response to SSRIs
• Spyro – did not help horomonal acne