Testing for POTS, OH and MCAS
The problem with these is that specialists are rare. Seeing an expert may require long travel which is certainly not a pleasure with POTS, etc. Living in a small country, there may be no experts at all. So before undertaking any bigger efforts, there are plentiful reasons to first get the basic tests done in a GPs office or even at home.
MCAS
it is not so difficult to get tested, see here:
http://www.dysautonomiainternational.org/blog/wordpress/a-tale-of-two-syndromes-pots-and-mcas/
While these are not-so-frequently done tests, here in Europe I found that major labs such as Unilabs can do them.
POTS and OH
Basic tests in any doctors office or at home
The fully official scientific tests as carried out by experts would require a tilt table. GP's do not have that. The good news is that you can safely replace that by the "poor mans tilt table test", which means simply to stand up. On a tilt table, an increase of the heart rate by >=30 BPM (beats per minute), compared to laying, qualifies for POTS. When doing the same study laying-standing >=28 BPM already qualify for POTS. There is a simple reason for the 30 vs 28 BPM difference: standing is a smaller challenge because leg muscles will help pumping the blood upwards.
Here is a good link with all the exact details of what to do and how to interpret the variousest possible outcomes:
http://www.oiresource.com/oitest.htm
You can do all this testing perfectly well at home. There is just one obstacle: many BP meters are inaccurate. Also they require calibration all 2-3 years, which usually no private person does or even knows about. I bought my BP meter after reading reports evaluating many devices for accuracy.
Important: Many people have issues only when there are additional hemodynamic challenges such as in the early morning or after a meal.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172399/
http://forums.phoenixrising.me/inde...tural-orthostatic-tachycardia-syndrome.42733/
This perfectly qualifies for POTS, etc, but the measurement at the doctors office will miss the diagnosis. -> Get tested when you have the symptoms!
Ok, these were the basics. Now, a more interesting thing comes.
Testing for what happens inside: noradrenaline as a measure of sympathetic vasoconstrictory effort
I made the experience that even neurologists and professors at respected hospitals do not know about the following:
A standing-laying study of noradrenaline (=norepinephrine). Standing vs laying noradrenaline is of interest, because it is a measure of sympathetic vasoconstrictory effort.
Even if your BP and heart rate results are only borderline bad or not even that, it can be that your body has to mount tremendous effort in terms of sympathetic vasoconstriction in order to get you standing. The heart rate will only increase if the vasoconstrictive efforts fail. Too much sympathetic effort is damaging to health because sympathicus is inhibiting the parasympathicus and parasympathicus is what is needed for digestion and immune system. The trick is essentially: Noradrenaline can be produced both by the adrenal glands and by neurons. So when doing a single measurement, you dont know where the noradrenaline comes from. But upon standing up, it is only the neurons that issue commands to constrict vessels. They release noradrenaline and this can be measured in the blood stream as some of it spills over into the blood.
What I did: Have noradrenaline tested as I walk into the lab (take care not to sit in the waiting room, but stand!), then lay for 15 min on a lit to get fully relaxed. Then have the noradrenaline taken laying. Instruct personnel beforehand to not talk to you and not make you move or sit up as this will falsify measurements. Ideally they should put a port into your arm, so they do not need to sting you with a needle when laying.
This test you cannot do at home, nor at a GPs office, because blood draws for noradrenaline need special handling. But you dont need to go to a hospital either. It can be done in a lab if they have a lit.
So in the following paper you see that an increase of more than 600 qualifies for hypadrenergic POTS:
http://www.ncbi.nlm.nih.gov/pubmed/21947988
There are two things, however, which do not stand in this paper:
First, it is fully sufficient if you reach the >600 only in certain situations, when there is additional hemodynamic challenge, for example after a meal (blood in the belly). So you should get tested then, when you do have the problem, whatever your trigger is. It is uncomfortable to be in a lab then, but for such tests I just had myself drive there with a taxi and prearrange for rest afterwards.
Second, even if you do not reach the 600 noradrenaline increase, you still can have some pathology. The following paper provides normal values for healthy people of different age groups, standing and laying:
http://www.sciencedirect.com/science/article/pii/S0167494397000083
My increase of noradrenaline was well bigger than that of healthy normal people but somewhat under 600. Now, one needs to dig for causes. And that is where my next post comes about testing for vasodilators, see below.
A great diagnostic list for further details on POTS is here:
http://dinet.org/index.php/information-resources/pots-place/pots-detection
How about you and your POTS? Did you already get tested for standing-laying noradrenaline?
and add me to the list... I also did not think there was a commercial lab doing this test outside of one research study in Germany. I look forward to learning more about this when you are well enough to post. No rush and I am very patient too 