I saw my gp whilst in Australia today, and although very nice, he implied all is fine and dandy. Has overlooked somewhat that I have been ill as soon as the plane touched down over 5 weeks ago! Like I would choose to be ill at a time like this!? Anyway all remaining bloods were normal. He gave me a print out of them and the CT results, I didn’t have to ask. I was a given a CD of the scans last week anyway which was good. I have looked at the results, had a marginally high albumin and low phosphate which is due to lack of eating and dehydration. Blood sugars were up, surprising seeing as I have not eaten a lot. I noticed just as you said, a lot if my results were just in the normal ranges, for example potassium is 3.6 (3.5-5). I very much get what you mean about the POTS patient having less circulating volume and needing to function as normal with less fluid and often less electrolytes etc.. Interesting. By the way I asked the doctor today if he thought my problems could be a form of autonomic dysfunction, he said NO, going onto say that the autonomic system governs the fight flight response (as if I didn’t know). He asked me if I have panic attacks!!
I have never had a neck or head injury, though I do identify with your occipital pain and pain behind right eye (mine is always on the right). I do feel I have excess pressure in the occipital region. If I lie upright head in pillow, head in flexion a bit, I get visual disturbances, as I sometimes can when I look down without moving my head. It feels like the nerves are struggling to carry out the action. It’s an odd feeling that makes me feel nauseous after a while. Also happens when my eyes are closed sometimes, it can be very uncomfortable as i try to sleep, eventually i do. Feels like the brain stem is under stress. Perhaps this is what causes the sensation that it is hard to breathe. I probably do need an MRI when back in the UK. This could be a challenge when I present him with all the so called normal tests I have had.
I need to try sleeping in a different position, though tricky in a foreign bed! Do you sleep with elevations at the head and foot of the bed? I have heard that elevating your head a few inches is good for CSF drainage. Sounds logical. I tend to be most symptomatic in the morning, I am light headed pretty quick, plus bladder is more irritable making the toilet dashes more of a challenge. I am only 40, feel like an old man, lol…
One thing I have noticed with dysautonomia and related conditions is that pathological changes are subtle and easily missed and dismissed. Unbelievable amount of ignorance and an unwillingness of the medical profession to think outside of their own limited knowledge base. Clearly more research is needed. I am with you about the anatomical weakness theory and the role of viruses. I am guessing previous mumps, EBV, CMV, VZV, have all contributed to this for me weakened my body etc..
Can I ask you, for your autonomic issues who did or do you see? A cardiologist? Neurologist?