How I Finally Got My Orthostatic Intolerance Diagnosis

My doctor took my blood pressure and pulse as I changed positions, first lying down, and then standing. I felt a little lightheaded as he helped me to stand up. He had to steady me a bit.

“Yep. Your blood pressure isn’t adjusting properly.” He explained what we’d just done wasn’t the best way to diagnose the problem, however, and suggested I make an appointment with a cardiologist and request a tilt-table test. During a tilt table test, you’re strapped into a bed as it is slowly tilted up at different angles. Meanwhile, your heart rate and blood pressure are monitored.

My primary care physician (PCP) recommended the same cardiologist my husband went to. I’d met him during my husband’s care. I’d also had his daughter as a student and met his wife, who worked in his office. I live in a big city, but it often feels like a small town in this way.

At the cardiologist’s office, I tried to explain the dizziness I felt in the mornings after getting up and how I felt that way driving, too, sometimes – or watching movies or TV with a lot of motion. He listened thoughtfully, but he wasn’t convinced a tilt table test was warranted. He suggested I try other things like increasing salt and fluids and wearing compression hose to see if that helped. I’d already tried those measures, but the dizziness wasn’t any better. And at this point, I was avoiding any long-distance driving.

“There just isn’t enough proof. If there was a way to monitor your blood pressure while driving, it might be possible to see what’s happening, but there isn’t any way to do that.”

I started crying. Well, “bawling” would be a better description. This was a heart crisis, but not the kind he was used to treating with great skill and calm as I’d noticed when he treated my husband. Nor was this the kind of heart crisis I remembered from the long-ago dating phase.

It was a metaphorical heart fading away like a falling star from years of seeking help but facing an odd resistance to providing help. It was the jerky ride of seeking a diagnosis and then treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I didn’t expect cures. I understood it was a
chronic illness. But some ME/CFS symptoms can be alleviated for some patients. Even here, among friendly acquaintances, I was met with a stodgy shake of the head and silence. Nope, can’t do that.

I get it. I wasn’t a heart patient, and tilt table tests seemed to be very uncommon where I live. Cardiologists in town probably feel an even greater sense of that small town dynamic amongst each other.  Most would probably have laughed at such a request. And then there’s the fallout from insurance companies that comes with ordering expensive tests. But I guess my heart had had enough.

I don’t know if he noticed. But to my surprise, he said, “OK.”

The tilt-table test didn’t show any blood pressure abnormalities. It seemed like the time between angle intervals was too short, and what we were doing seemed new to everyone. There was an atmosphere of getting it over with quickly, too. But I didn’t want to say anything given the reluctance on the part of the doctor to even order the test— he was there, observing. Later I read that, yes, there should have been more time taken between each interval of the tilt among other details that have to be considered, such as the best time of day to do the test.

“Did you know you have orthostatic intolerance?” the ear, nose, and throat (ENT) doctor asked a few years later. The primary care physician had tried to unblock a wax plug in my right ear using a hydrogen peroxide wash. The pressure as the plug was dislodged blasted skin off of my inner ear area, leaving a snake-like twirl of skin dangling
in my ear canal.

The ENT physician was using a vacuum device to gently clean away the debris as I was sitting in a specially raised chair. I nearly fell over from the dizziness. After he finished, he ordered the nurse to check my blood pressure and pulse changes while lying down, sitting up, and standing. It was the similarly modified office test my PCP had used that NASA uses to check how astronauts are readjusting to gravity after being in space. I was not adjusting well.

“I think I’m probably the only person to have a tilt-table test to check for orthostatic intolerance here, and it was negative.”

“Well, you definitely have it,” he noted.

It’s a complicated process for the body to go through, standing up and not passing out. Orthostatic intolerance (OI) is a general term for the kinds of things that can be out of whack in that process involving a lovely choreography of blood pressure, circulation, heart, and the nervous system. For instance, if the blood pools in the lower body when sitting or standing rather than returning to the heart and brain, that’s a form of OI. It’s a common condition of ME/CFS and fibromyalgia, which I was diagnosed with a few years after my ME/CFS diagnosis. And with a mitral valve prolapse, which I also have.

I’m now on a medication that treats OI. I haven’t noticed dizziness while driving or watching TV since. I can sit up for longer periods of time and feel more alert. What I’d been feeling that was so difficult to describe is what happens before passing out for people with more severe OI.

At first, it felt weird to be happy about an OI diagnosis. When I think about it, though, why shouldn’t I be happy about that? At last, something concrete to explain some of the ME/CFS symptoms so poorly categorized under “fatigue,” and something that can be treated.

And that dangerous precipice between being conscious and unconscious? Yeah, I’d like to avoid that.

Getty Image by dmbaker