Just a note before I begin: my account is that of someone with ME/CFS with a pre-morbid tendency to OI. For as long as I can remember, ie long before ME/CFS, I had some degree of orthostatic intolerance. It manifested as inability to stand on trains in the morning, feeling rotten in baths and other hot watery things people seem to love, feeling crap when playing sports that involved lots of standing around and picking things up from the ground, things like that. It did not interfere with life. I did not faint. I knew I needed to sit down and I did. I was very fit, loads of lower body exercise, drank water, looked after myself. It was just how my body worked. I did not know what it was until ME/CFS amplified it to a disabling degree.
Symptoms in order of proximity to actual fainting:
· Cognition gets slower – I’ll get mixed up, do things in the wrong order, not be able to talk
· Dull headache, low in head, “headache” is the wrong word but the closest to how it feels
· Nausea
· Feeling very hot
· Feel shaky
· Feel weak
· Grey fuzz in front of eyes
what sort of position makes them worse
From worst to least bad:
· Standing still (not an option for longer than a few seconds)
· Getting up and down a few times in succession (ugh, makes me feel rotten)
· Walking around
· Sitting still (not an option – meditation teachers often want you to sit upright so that you “stay alert”, but if I sit and relax I get lightheaded quickly. If I have to sit still then I need an emotion like anger to keep my blood pressure up!)
· Bending over to pick something up (need to instead do a plie like a ballerina and reach out hand blindly for whatever I’ve dropped)
· Doing little upright jobs eg putting things away (can do brief bouts before a big rest)
· Sitting while moving arms
How I deal with OI:
· Have to be on or near a bed at all times.
· Have to keep well hydrated. In hot weather I need a constant stream of iced water. In regular weather, room temp water. One expert told me I was drinking too much so I reduced it down to almost what they suggested and was a mess, big increase in near-faints. Brought it up to 50% more than they suggested which was a bit better but still much more symptomatic for the 6 months I stuck with it for. Went back to just drinking what I need.
· Have to keep my temperature at a comfortable middle level. So when the central heating is on, we make sure my rooms don’t get too hot (this takes keeping an eye on forecast, thermometers in each room and a lot of work on thermostats). When it’s hot, fans and curtains closed and late at night, let cool air in from outside.
· Need 4 rests lying flat every day – 1 hour, 2-3 hours, 30 mins, 20 mins.
· Between rests, I am lying in bed, propped on two pillows, almost all the time. The only time I’m not lying is if I’m going to the bathroom or moving to the other room or doing little jobs.
· Have to shower last thing at night, because it’s the hardest task in terms of OI. Earlier showers are much more likely to cause symptoms and scupper the whole day.
· No talking after shower. Even though I often think I’m doing OK and can do the things I need to do, or say one sentence, any attempt at an actual conversation reveals that my cognition is pants.
what happens if you try to stay upright for longer
· Feel hideous, increasingly so, until I either near-faint or can lie down to rest. Lying down does “fix” a lot of the most acute symptoms, or greatly reduce their severity, but I generally need to stay down for quite a while (an hour) before attempting the next upright thing.
· Depending on how far it goes and lots of other factors, I may feel worse for the rest of that day or into the next day.
· Repeatedly pushing through upright activities in one day can make my OI worse for a few days, disproportionately to the PEM that will also be triggered.
· Repeatedly pushing through OI symptoms on a regular basis as instructed by multiple health professionals made my OI and ME/CFS deteriorate significantly, and so far, irreversibly. (I’m allowing myself a causative statement there.)
is it your most disabling symptom?
· Yes.
· It means I’m housebound and bed-based, and it meant that long before my ability to walk reduced enough to put me in that place. The only thing I can leave for – medical appointments – make me feel rancid, despite lying down in the car, lying while waiting, wheelchair from car to office, lying on exam table for consult.
· It means I have to spend 5-15 times as much on a mobility aid as I would otherwise. This is because I need a powerchair that can tilt/recline and raise legs sufficiently to stop a faint between beds.
Tell us what makes your OI worse or better, how it relates to the rest of your ME/CFS, anything about your OI.
Worse
· Heat
· High humidity
· Dehydration
· Mornings
· Doing more (and hence being more fatigued)
· Being upright more
· GET
· Following professionals’ advice to exercise more and to stay upright for longer at a time, no matter how slowly or gradually or tailored
· And then all the usual things like infection
· Undiagnosed iron-deficiency anaemia made it
a lot worse (same symptoms, same patterns, but got to the near-faint stage more often)
Better
· All the strategies in other answers above
You can share your personal data about heart rate, blood pressure, Nasa lean test or tilt table testing if you have any.
I’m not going to get into the details of this, I’ll just make general comments. My OI affects blood pressure rather than heart rate, but it only affects blood pressure when it gets to the near-faint stage. I stay conscious at very low blood pressures, long after many others would lose consciousness. I feel dreadful long before this.
I have real misgivings about current testing and the interpretation of that testing. It's also extremely problematic that OI professionals believe fervently that exercise improves OI. That includes most that are considered ME/CFS expert clinicians, with notable exceptions like Visser and van Campen.
