Chescia came out of St Vincent’s Hospital; 8 days ago, after 17 days admission. During that time she was wired to a remote ECG for 17 days, she had several EEG’s, all kinds of blood, lung function and sleep tests and attended to by Professor Ron Penny (a leading immunologist), Dr Garrick (a leading neurologist), cardiologists, psychiatrists, asthma specialists and others.
Whilst all accepted she faced physiological issues and witnessed most of them; shallow respiration (low C02), continuous leg and other extremity tremors, heart rate fluctuations 70 bpm to 183 bpm in moments), seizures (they recorded them as events) and anxiety attacks as she felt the physiological symptoms emerge – not one could explain why!
The seizures were new to her arrival at hospital and appeared to be triggered by effort, (a shower, a short walk along the corridor) and “amped up” by her rising levels of anxiety. The Psychiatrist helped her with tools to control these to the extent that in the 6 days before she left hospital they all but disappeared but the other symptoms did not. Prof. Penny said he would call it “Tunley Syndrome” and sent her home.
Now at home – the respiratory, tremor issues remain – she complains of being constantly short of breath and is forever breathing into a paper bag. However the seizures have also returned and these now involve convulsing, whereby she blacks out convulses and stops breathing-it is very, very frightening?
I have no idea where to go or what to do next – any ideas or directions?