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Heat, symptoms and irritability


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No real purpose to this thread really other than to vent how I am feeling at the moment....

Its been getting warmer recently up to a warm for the UK 30 degrees C and I have had to do some slightly more physical tasks at work as we are moving offices.

Gradually I have noticed that I have been sliding down hill. For a while 20 to 60mg a day of propranolol seemed to snub out a fair amount of my POTS and other autonomic symptoms. However it doesnt seem to be touching it at the moment. I am going from 48bpm lying down to up to 100bpm standing, my pupils are different sizes, chest pain, feeling a bit edgy / anxious / wired and my vision is off, to top it off I also feel very irritable and have no patience with people. I think the latter is related to just feeling terrible.

I hate the feeling of being wired and edgey and no one seems to understand when I say that it is caused by over exertion and goes away with rest!

I know if I spend a week completely led still with minimal stimulation I will feel a lot better but there is so much that I want to do. I'm at a point where I am thinking I may as well keep pushing and pushing and doing things I enjoy regardless of how bad it makes me feel, however I know this will end up in the ED and complete rest for a month or more which is torture.

I have tried gradually increasing exercise but it has had no positive effects at all. Little over 3 years ago I was doing 20 minute 5km runs and 3 hr 30 mile cross country bike rides a few times a week. I still cant understand how I can go from this to not being able to do anything in a number of weeks with no explaination.

Team medicine have basically done an MRI of my pelvis, abdomen, chest, neck and head and a couple of blood and urine tests and given me propranolol and told me to go away and deal with it which isn't helping a sense of despair!

I have had some dodgy results but the medics dont seem too worried...

2 x ref range 3-Methoxytyramine (dopamine metabolite)

Over ref range cortisol but supressed with a dexamethesone supression test

Over ref range 5HIAA

25mmhg difference in systolic BP between left and right arms when symptomatic

Different sized pupils when symptomatic

A sharp increase in libido when symptomatic (its so strange feeling terrible but wanting sex at the same time)

40 to 50bpm rise of HR with no drop in BP from sitting to standing.

Passing 4 litres of darkish urine a day and still feeling dehydrated


Over reference range ferretin

My main GP problem is that there is no "read code" on their computer system for dysautonomia so they dont beleive it exists.

I have been considering trying an SSRI such as citalopram just to see if it has any effect on things. Any views on this?

I have also wondered about MTHFR mutation and homocystiene and whether to get checked for that.

Appologies for the rambling waffle!



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