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Around 2 years ago I was riding doing 40+ miles a week of MTB work, a park run on a saturday and a couple of gym sessions and feeling pretty good.
Then suddenly I started getting migraines and feeling extremely fatigued. Since then I have slowly had to stop all exercise and now I'm just about managing to work full time.
I got reffered to a cardiologist who noted a dramatic rise of heart rate from 50 to 100+ on going from supine to standing (pots) and a 40mmhg systolic difference in BP between my arms when measured at the same time. I was sat there at one point at 195/110 in my left arm and 154/90 in my right. My 24hr ECG logged a sleeping rate of 29bpm which I thought seemed quite low but no one batted an eyelid!
I was then checked over by neurology who noted that one of my pupils becomes larger than the other during one of these attacks as well as a number of other asymmetrical symptoms like my right hand being icey cold. This apparently all point to something screwy in my nervous system.
If I do any exercise now I end up with a really bad flare of these symptoms. I painted a wall in the kitchen the other day and ended up missing Christmas to recover from the flare.
Has anyone else been told they have POTS / dysautonomia / autonomic dysfunction and managed to improve?
There seems to be little interest in looking for a cause or care that I am becomming decreasingly able to function.
I'm frustrated that after an MRI / MRA head, neck and aortic arch and a few blood tests I have apparently reached the end of the diagnostic road as the results were ok. I have no follow up until November 2016 and the only advice is to "listen to my body" and no reply when asking what caused it / will it get worse.
Sorry for the grumpy post, I just dearly want to get back to doing some exercise regardless of how little! 🙂
Keep asking people, going to the doctors. It's frustrating, but it can take a while to find the right person with the right interest / knowledge. Once found though it is great.
A friend has fatigue issues that aren't really explained, but relate to a head injury years ago, only in the last few years has she really got a grip of it and how to manage it from eventually finding a doctor that could help.
I was thinking about this the other day. I find (even here with private health care), the Doctors seem too happy to just pass things off as it'll be okay and I quite often wonder how interested they are in really getting to the source of the problem once they have done the blood tests and MRI's and nothing obvious has popped up.
I've not had anything serious (touch wood), but as most of us are pretty active and fit, we know when something's not right. You can leave it for a bit to see if it sorts itself out, but after a while you know that something needs attention.
OP, hope you get it sorted, doesn't sound very pleasant at all.
Thanks chaps, I don't really know what flavour of doc to approach next.
It does seem a little mad that its exercise that makes my symptoms worse but I haven't had an exercise ECG / blood test. I don't really feel in a position to demand one either 🙁 as pushing for anything makes you appear to be a problem patient. They just can't grasp that I have lost my hobby, friends and fitness and therefore of course I want to bottom out whats causing it.
Very frustrating, luckily I really enjoy my work so I have managed to stave off any depression. Adding that to it would have been a complete shocker!
Have you seen this?
A list of doctors with an interest in POTS. Just if you were still wondering what to do next