November 10, 2016 at 8:32 pm #1058PulsarParticipant
Hello, long time reader and first time poster here.
I am a 22 year old male in extreme, progressively worsening agony, unable to work or go to school at this point. It started during infancy from a reaction to antibiotics. I was diagnosed with dysautonomia, IBS, CFS, fibro, GERD, asthma, cervical radiculopathy and countless other co-morbidities.
When I found this site, I stumbled across the most accurate description of my headache yet. It is a very nasty pain accompanied by a sensation of pressure/squeezing, and it radiates down my neck and to the area between my shoulders. The pain worsens with standing up, swallowing, and moving my neck. Assuming an upside-down position makes it feel like my head will burst or as if I am deep underwater. It is accompanied by dizziness and a constant ringing in ears.
For some family history:
Mother diagnosed with POTS, MCAS, CFS, fibro, anemia, etc. Her onset was during adulthood.
Maternal grandmother with a flu-like illness that began in middle age and never went away
Sister with some allergies/sensitivities, but is able to lead a normal life otherwise.
I strongly suspect that MCAS could explain at least part of my symptoms, though I was never diagnosed officially. EDS is also on my radar since I have scoliosis and pectus excavatum, but it’s hard to tell because I don’t present with the “classical” EDS symptoms of hypermobility or skin elasticity.
Going back to the topic of the headache, one of my worst symptoms, it’s obvious that I have a CSF blockage, possibly due to Chiari 0 or cervical instability. My recent brain and neck MRIs were interpreted as being normal, as I had expected (if the radiologists even bothered with examining them) Is there anything out of the ordinary visible on my MRIs, such as cerebellar tonsil herniation?November 12, 2016 at 2:35 am #6036BarbaraParticipant
Just a quick response, I think you are right, you have very low-lying cerebellar tonsils (lowest part of hind brain) that are almost protruding through the foramen magnum (hole in the bottom of skull), sometimes referred to as ‘Chiari 0’. You also have a retroflexed odontoid (a backwards facing top of axis bone, the peg-like C2 vertebra bone). Either of these two elements can interfere with the normal flow of cerebro-spinal fluid, so the combination of these two elements, gives you a double whammy so to speak. If you are unfortunate enough to have EDS (or have suffered a head and neck injury which was bad enough to have torn the ligaments) this can cause instability around the cranio-cervical junction, giving you another contributing factor to the restriction of cerebro spinal fluid.November 12, 2016 at 1:40 pm #6039PulsarParticipant
Thank you for the response and for pointing those peculiarities out. What is the quickest way to have these defects “officially” documented, so that I could prove it to my current physicians? The chiari institute is not far from where I live, and their new patient screening process involves sending them the MRI discs and medical questionnaires, but I’m guessing they will charge a large fee.
Just to get a better grasp on this, is this where the odontoid bone causes interference?November 14, 2016 at 4:42 pm #6041BarbaraParticipant
Yes it is.
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