Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Monday, 1 January 2018

Testing for Orthostatic Intolerance

Way back in 2009, after I'd begun heart rate monitoring (my initial readings can be found here: Compared to the normal ranges for my age, I'm dead ... and recent monitoring has confirmed this to still be the case, in fact the readings were generally even lower), I followed it up by doing Dr. Bell’s Simple Test for Orthostatic Intolerance, which I'd first read about on Sue Jackson's post on Orthostatic Intolerance and CFS.

However, I never managed to write up the results, so here they are. As recommended, I began the test late morning, ~2 hours after breakfast. Before starting, I'd merely been to the loo and back, hardly an "unusual activity!"

Interval SYS DIA Pulse Observations
Outset 91 60 78 Normal after mild activity.
5 minutes lying flat 111 62 54 Typical resting figures.
10 minutes lying flat 92 63 51 Ditto.
5 minutes standing ? ? ? Unable to stand still - swaying uncontrollably. After less than 2 minutes, twinges in ankles, feeling of swelling, assumed to be blood pooling. After 3 minutes began to get lightheaded and nauseous.
10 minutes standing 128 100 60 Shortly into round 2, began to get a headache, nausea becoming worse, extremely hot, sweating, trembling.
15 minutes standing 109 74 80 Other symptoms continue to build, plus lower back pain started, legs ache, urge to march on spot. Feet appear red and mottled.
20 minutes standing 97 60 73 Pain in ankles, shins and calves worse again, pain in hip close to unbearable, nausea and trembling both up another notch. Trying to control thinking in increasing brain fog becoming difficult. Dry mouth.
25 minutes standing 110 62 72 All symptoms still increasing, but ability to articulate ceased.
30 minutes standing 99 74 85 Ditto.

If we go by the numbers, then I think the results of this test are inconclusive.

Certainly the trend in my pulse rate appears to coincide with what would be expected in a patient with orthostatic intolerance and the final pulse reading of 85 is still more than the tolerable 28-30 rise from the resting pulse of 51.

Although there is nothing in the real danger zone, it's not difficult to see that, once I begin activity and not just standing on the spot, however cautiously, I am bound to go into the "exhaustion zone." Even if I keep within my limits while doing light activity at home, the moment I need to exert myself by having a shower, or walking anywhere, I just get caught in the vicious cycle of 'push and crash'.

The blood pressure readings are all within what look to me to be the tolerable side of low. What I don't understand is why they went up and down erratically and at times up, when the expected result would be down. My hunch, based on how I felt, is that my blood pressure rose in direct relation to the onset or notable increases in symptoms of pain, hot flushes and overall discomfort.

Frankly, I was more than surprised that I managed to get through the 30 minutes of the standing test without becoming so lightheaded as to be unable to remain upright, because this has happened before, inside a minute. That said, I know I was only able to push beyond what I'd normally be able to tolerate, mostly because I was doing nothing else that day and was in the relative comfort and safety of my bedroom, i.e. I knew I could lie down if it got too much and that I could - and did - lie down for most of the rest of the day to recover.

If I'd attempted to stand for a few minutes, say in a work environment, I wouldn't have been able to do anything else while doing so, nor for the rest of the day. Even if I'd only been out shopping, I'd have found the symptoms intolerable and would have needed help, or to sit down (as I have on many a shop's floor).

As soon as I finished the test, I did have to lie down and continued to have a headache and nausea, while the trembling, which is my usual response to any over-exertion, was still continuing to increase even several hours later.

The next time I got up to go to the kitchen, after a short rest, I felt achy, battered and bruised and, as soon as I was upright, the nausea and trembling increased again. The second time I stirred, to answer the door, although I didn't lose consciousness, I couldn't focus, nor keep my balance and was bumping into walls.

Later in the day, as often occurs after exertion, I suffered a nose bleed.

The pain in my back, hip and legs, lasted the next few days. Nine years on, my symptoms come on quicker than they did in 2009. My tolerance for standing has decreased and rather than push myself into flares of symptoms that would put me in bed for a week or longer, I now have help to do all of the things I struggle with, including wheelchair assistance whenever I'd need to stand or queue.