Hi guys,

Please forgive me if I have posted to the wrong group but I'm pretty certain I am in the right place.

I am 44 years old and for the past 7 years I have been experiencing some pretty awful autonomic problems which seem to come in waves. I have a permanent tachycardia with a resting heart rate of 110 which at times can be bradycardic as low as 40bpm. I have orthostatic hypotension but the attacks are so transient as to not cause syncope although I can get dizzy if I repeat triggers such as straining or arm movements, I can extend the duration of blood pressure drops by maintaining an unstable posture which is the only way I could sustain them long enough to be measured. I have sporadic POTS. I have had a few instances of diplopia. I suffer from task based confusion and general fuzzy headedness. I have had inaccurate swallowing although not severe, I have sporadic numbness in the ulnar nerve bilaterally, and sporadic poor pupil response causing photosensitive eye pain and headaches sometimes having to wear sunglasses to use the computer or watch tv. I have inspiratory gasps particularly on transitioning to sleep when I also experience some very unpleasant cardiac symptoms that feel like my heart has stopped and some apnea and very loud snoring. I have the same feeling as normal people have on waking for a few seconds that in my case can last several hours or even all day. I have recurrent nail indentations like Beaus Lines although they are wide and undulating. I have reflux that has caused me to inhale stomach acids in my sleep. I have very disturbed sleep and occasionally wild dreams. I get a good deal of chest pain and headaches and occasional back pain. I have periods of rapid oscillation of heart rate and blood pressure. I have suffered a severe episode of syncope resulting in fitting and left twitching for hours afterwards when beta blocked down to 60bpm. I have very mild urinary incompletion and difficulty initiating, and no erectile disfunction. I have had some constipation and bloating and diarrhoea although mild and rare, and severe exercise intolerance

The condition is sporadic usually having one large attack annually lasting up to six months followed by several "aftershocks" interspersed with periods of partial "remission". Each attack is different resulting in patches of each symptom lasting about 2 weeks before fading and being replaced by a different combination of symptoms.

Initially I thought I might have MSA but progression seems to be slower, my age is unusual and I have no motor symptoms. I was also able to tolerate propofol with only some variable heart rate and chest pain upon waking which I assumed would be a problem if my condition involved CNS. My history includes exposure to an unusual flu brought back from Indonesia by a backpacking cousin which caused my first episode of syncope and was followed within weeks by my first episode of diplopia. This combined with pleuritic pain and some thickening of the skin on my feet led my to consider the possibility that this may be an autoimmune mediated autonomic neuropathy. Not only that but attacks have been accompanied by very hard lumps like chickpeas in my arm-pits and wrists and always with painful glands in my neck near the carotid sinus and occasional carotid sinus sensitivity. Sometimes attacks are initiated by mumps like symptoms and exposure to cold or flu viruses which are destroyed in hours. I have also noticed that a marked improvement of symptoms can be achieved by riding my motorbike which is like Lorenzo's Oil which I assume is the result of the generation of catecholomines.

I would be very interested in any feedback on this perplexing and extremely debilitating condition as it doesn't fit nicely into any particular autonomic condition having elements of many. I have had an abysmal experience of the medical profession to date having been dealt with initially as a psychiatric case and even accused of being a malingerer until I finally persuaded my GP to refer me to a cardiologist who confirmed a neurological condition that definitively ruled out a psychiatric etiology.


Many thanks