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Huh. Seems like all the tests to diagnose intercranial pressure involve drilling a hole in the head? Interesting. As a teenager I once became fascinated with the idea of trepanning. I knew then that what I was experiencing was pressure.
I did find some extensions shots.
And also attaching one from a CINE MRI I had.
A couple skin pictures:
-a picture of the rash I often get on my chest (it’s not a sunburn)
-a picture of the red plugged “bumps” on my legs
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
• 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
• 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
• 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)
• Mood swings
• Extreme anxiety
• Mental clouding
• 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
Oops. here is one more.November 12, 2014 at 11:55 pm in reply to: Normal range for plasma norepinephrine & POTs and how high your heart jumps #5107
Yes! I am frequently lacking in energy.
I think the testing was a fairly “typical” day. I was surprised a few times by the way the nurses reacted over the course of the test. Several times they brought up the fact that they were surprised I was coping as well I was. During the tilt phase, I did experience the expected anxiety and chest tightness and a couple soundless tears escaped.
Nonetheless, I thought, but did not say, “Are you kidding me, one tilt is nothing, try vacuuming a house”. Or “try holding down a job”. Or try just about anything where you don’t know whether before and after you will have time to rest and recuperate. Whatever is going on, it is cumulative.
At the end of all the testing, the nurse told me she could tell I had been coping with this for many years, and I was so grateful for that.
How long did you live with POTs before you knew what it was?
Hmmm, okay. This is the only other side shot I see. The ones before and after are more blurry.