I’m curious, do drinks have the same effect as food, i.e. hands cold & clammy; tachycardic; nauseaous ? This is like a ‘heart under stress’ reaction, isn’t it ? I am wondering if you have vagus nerve compression in your neck. I know you are on Dr Driscoll’s website but are you aware of the Driscoll Theory ? I’ll try and be brief, to simplify it, I’ve called it ABC (forgive me Dr Diana for putting my own ‘spin’ on it!). Dr Driscoll has theorised that what we are suffering from is the combination of the effects of the following, on the body:-
A = Allergen dysregulation
B = Brain compression
C = Circulatory issues
Basically it’s the combined effect that allergen dysregulation (mast cell activation), brain compression (from external communicating hydrocephalus) plus circulatory issues (for example ‘backed-up’ venous drainage) has on the body.
I wanted to bring that to your attention because one of the points, which Dr Driscoll has brought to light, is the fact that many of us have an enlarged Interior Jugular Vein (IJV). This vein, at some point, is encased in a bony chamber alongside 2 other structures, the Carotid Artery (CA) and the Vagus Nerve. Now the Carotid Artery has a higher pressure than the IJV, therefore cannot be compressed by the enlarged IJV, so the Vagus Nerve cops it! As you probably know, your Vagus Nerve controls your heart, your lungs, your stomach, your intestines, your kidneys, etc – do you see the connection ?
When you get your Head/Neck MRI back tomorrow, check out the width of you IJV. Just a thought, if your pulse pressure is very low, maybe your carotid is copping it a little too! – or maybe that’s not possible, I don’t know.
If you’ve been sweating (and excreting) excessively, whilst being unable to intake nutrition, chances are you could be deplete of several minerals. This could be why you jerk and have fasciculations. My injury caused ‘autonomic governance’ malfunction due to intermittent subtle brainstem compression, the first sensory changes were tingling; then numbness where it was once tingling; then (horrific) pain where it was once just numbness; then fasciculations. This started distally (hands and feet) and over weeks and months worked towards my body, eventually affecting my abdomen, then head, face, tongue (scarey) etc. By this time the fluctuating raised intracranial pressure had started to flatten my pituitary and I was suffering from obvious signs of dehydration and other hormonal problems.
I had no idea that I had EDS III before my accident, as it had no impact whatsoever on my life, other than making me appear younger than I was (bonus!). At 48 I was strong, fully functioning and free from pain. As a child I went over on my ankles (and knees) a lot but this resolved by my teenage years. My Mum could do the ‘thumb to wrist’ trick but I couldn’t. It was only when trying to figure out why my neck ligaments hadn’t healed, after the first 3 months of wearing the collar and brace, that I started looking into it. I don’t think it was helped, by the fact that I had gone 5 years after the accident, before I was put into a collar though!
When I was a child our NHS system was envied by the world, there was no discipline-dissociation, budgets, targets and all that rubbish, just straight forward multi-disciplinary caring. Although I embrace change, it needs to be an evolution of tried and tested mechanisms – not some young upstart who comes in and says “I know, let’s change everything and do it this way!”. Oh don’t get me started on the medical profession – it’s mismanagement at it’s worst!
Having suffered from extreme fatigue, I am certain it’s roots are organic and I’m working on this at the moment. It’s a gross injustice, that fatigue sufferers are treated (or more accurately ‘mistreated’) with ignorance, contempt and disdain. These people are not just ‘couch potatoes’ who can’t be bothered. It was called Yuppie-flu at one time because it was affecting young, active, enthusiastic, go-getters – ‘Type A’ personalities.
Your MRI may come back as ‘normal’ tomorrow, or it may come back read as normal by someone who doesn’t know what to look for !
These are the questions that I would additionally ask the radiographer, given opportunity:-
1) Is there ANY degree of low-lying cerebellar tonsils (no matter how slight)?
2) Is there ANY flattening of the pituitary gland (which should look like a cherry, not a pancake!)?
3) Is there ANY level of excess fluid interstitially in the brain?
4) Is there an excess of CSF fluid in the subarachnoid space above the brain?
5) Could there be mildly enlarged ventricals?
6) Could there be mild cistern engorgement with CSF?
7) Could the Corpus Callosum be slightly flattened?
8) Is there a retro-flex odontoid (the top of the peg-like cervical bone, which bends backwards)?
9) Is there a pannus alongside the odontoid (sign of craniocervical instability) ?
10) Are the backs of the eye globe slightly flattened?
11) Could either Transverse Sinus be stenosed?
12) Is either of the Internal Jugular Veins enlarged?
I wish you ‘All the Best’ for tomorrow and on your flight home – wise choice the airport assistance and wheelchair.
Regards
Barbara
(UK)