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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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upright MRI images: low pressure headaches

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › upright MRI images: low pressure headaches

  • This topic has 9 replies, 4 voices, and was last updated 8 years ago by Bamboozlem.
Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
    Posts
  • February 25, 2015 at 1:50 am #792
    Bamboozlem
    Participant

    Results: no evidence of cervical instability.
    Incidentally, I was in a great deal of pain while these images were being taken.
    Hurts more to bend neck back, hurts less to bend neck forward.
    Head circumference 57.5cm (98th percentile)

    Wondering if anyone can see anything here?
    My apologies if I have not posted the correct shots.

    Thanks in advance

    Attached files

    February 25, 2015 at 1:54 am #5321
    Bamboozlem
    Participant

    Oops. here is one more.

    Attached files

    February 25, 2015 at 12:17 pm #5323
    Dr. Diana
    Keymaster

    I wonder if you have symptoms of high ICP? Sometimes that is enough to try Diamox to help figure out if external communicating hydrocephalus is part of the problem. Your MRI, like mine, hints at the possibility of too much CSF in the subarachnoid space above the brain, and supports the idea that you *may* respond to Diamox. Your sella looks good — which is great. Like many of us, it looks like it hurts to bend your neck (your discs bulge a bit). Are you showing us these because you’re considering a neck fusion, I wonder?

    February 25, 2015 at 9:03 pm #5324
    Barbara
    Participant

    Do you have a flexion view, with your chin down ?

    March 3, 2015 at 1:31 am #5327
    Bamboozlem
    Participant

    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

    March 3, 2015 at 1:41 am #5328
    Bamboozlem
    Participant

    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

    Attached files

    March 3, 2015 at 2:24 am #5329
    Bamboozlem
    Participant

    Hi Barbara,

    I did find some extensions shots.
    And also attaching one from a CINE MRI I had.

    Thank you!
    Caro

    Attached files

    March 3, 2015 at 11:02 am #5330
    Dr. Diana
    Keymaster

    Sadly, I think most of us can relate to most of your symptoms. I wanted to mention that I believe this is how high (and low) CSF pressure can get missed — the symptoms often get lost in the mix. I, too, didn’t have incontinence, but had the other symptoms of high intracranial pressure (as did my son). In many EDS/POTS patients, some neurosurgeons encourage tethered cord surgery to reverse (or slow the development of) incontinence. Instead, this can be high ICP causing it. My daughter had few symptoms of high intracranial pressure beyond headache (and her head circumference grew much faster than her body). Her headaches went away overnight. In other words, we don’t have to have all symptoms of high ICP. Make sense? 😉

    March 4, 2015 at 11:56 am #5331
    Mog the Dog
    Participant

    Can someone tell me more about the type of incontinence that goes along with the increased intracranial pressure? I have had a few episodes that involve the feeling like my bladder just starts having spasms along with a strong urge to urinate followed by panic that I can’t get my pants unzipped in time. Most of the time I make it, but there have been several times that I have stood next to the toilet with pants still on and urinated the entire contents of my bladder all over myself because I couldn’t quite make it to the toilet in time. This symptom has come and gone over the years.

    March 7, 2015 at 3:00 pm #5346
    Bamboozlem
    Participant

    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.

    http://en.wikipedia.org/wiki/Trepanning

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