Well, it’s been a long journey and it’s a combination of many factors that have each contributed to a better standard of well-being, such as:-
Philadelphia collar (original type) 24/7 to help improve and maintain proper circulation of CSF around brain and spine
Support hose to improve blood circulation to rest of body (helps reduce blood pooling in the legs)
Adequate salt intake (to help maintain blood volume and produce appropriate stomach acid – has stopped gastric reflux)
Tried to reduce pain and fatigue by developing coping mechanisms, such as
Sleeping sitting up
Eating smaller meals (little and often, is better) the least processed food the better
Planned daily workload as follows
Delegate labour intensive tasks,
Alternate physical and sedentary work (half hourly)
Plan to get important jobs done first (then it’s less important if the rest doesn’t get done – reduces stress)
Recognise when ‘best time of day’ is for doing tasks, listened to body
Avoid ‘squeezing myself dry’ energy-wise
(There’s loads more to this section, this is just a sample)
Mitochondrial test highlighted areas of deficiency, mainly B vitamins but some minerals too, so multi-vitamins and multi-minerals helped
Coenzyme q10 level check showed I needed this also to help improve muscle function, which it does
Vit D level check due to being mainly housebound, showed levels were low, so supplement eases some of pain
Pituitary check showed Growth Hormone deficiency, so on daily injections
Neuro-ophthalmological check showed swollen disk – sign of raised intracranial pressure, so now taking Diamox
Massage twice weekly, some lymphatic drainage – to help speed upon body’s capability of ridding itself of toxins
I’ve probably missed some but basically every little helps, lot’s of small improvements contribute to an overall big improvement!
Yes, I had features of POTS.