i’m glad I found this website with your stories. Dr Diana is an inspiration and looks extremely healthy so it was a surprise to learn that she has also has EDS. She illustrates the problem of hidden illness because if you look good, people assume you are well.
Just over a year ago I tripped and hit my head on a door at home. It was a moderate blow to the middle of my forehead which didn’t cause much bruising but it has had life-changing consequences for me, causing insomnia, neck and left shoulder pain, headaches, a feeling that my neck can’t support my head, brain fog and racing heartbeat when I lie down or stand up. Any travel feels life-threatening and causes increased insomnia so my life is on hold.
I have seen 2 Neurosurgeons who have told me that their MRI scans showed an injury (retrolisthesis) at C3/C4 which is causing a little instability but they don’t seem to understand how unstable my neck and head are and the neurological consequences of this instability. I recently had an upright CCJ scan privately which showed cerebellar ectopia and a Chiari 0 but my Neurosurgeon doesn’t seem to want to comment on this.
I have never been diagnosed with hypermobility although it is in my family but I have always had allergies and 4 months before my fall I had a dental implant. I wondered if this made my neck weaker and more prone to injury before I hit my head and have tested positively for a titanium allergy. I have also been told that my blood has a very low level of salt and that there is a significant problem with the mineral base in my body.
Can anyone thow any light on any of this? I suspect that I may have an undiagnosed connective tissue disorder as well as the injury and that this is making my symptoms much worse than doctors can understand. Does anyone know what sort of doctor I need to see and how to get the urgent help I need here in the UK if possible?
I wish you all good health and happiness in 2015.
Yes, that’s one of the things that stood out to me when I first stumbled on Dr Diana’s videos – how well she was doing, standing up whilst she demonstrated her discoveries – I was amazed!
Sorry I cannot answer more personally but I am snowed under with tasks and devoid of time and energy at this moment, so I’ve listed below a few of my posts, talking about my accident and the progression of symptoms, which you may find useful.
Here’s a little of my history:-
I noticed symptoms related to position, especially at night:-
This talks of my association with hypermobility and the level of fatigue apparent from immediately after my fall:-
Here I talk of some of the symptoms (you might recognise some, if not all!):-
My thoughts on “low-lying cerebellar tonsils” :-
Here I answer specific questions about symptoms, tests, management etc, posed by another forum member:-
More about instability:-
Hope some of this helps you to understand your own symptoms and offers a little of what you can do to alleviate them.
Happy New Year!