The Diagnosis? You’re Not Normal.

 

This is a little update on what’s going on with me, health-wise because I know that some of you are curious. (because you’ve kindly inquired) If you’re not curious, that’s absolutely fine, but if you are and have no idea what I’m talking about, you can read about it here.

A few days ago, I saw a lovely elderly cardiologist who did some extensive testing on my cardiovascular system and FINALLY, he gave me a diagnosis.

It’s really awful when you keep hearing that everything is fine when you’re feeling like crap!

But the doc was very clear in his evaluation of the test he and his nurse conducted on me.

“There are two possible outcomes.

Normal.

Not Normal.

And YOU are not normal

But not crazy either.”

I beg to differ about the latter ;] but I understood that most of his patients are told that it’s ALL in their head. Or the catch-all diagnosis when they don’t know what it is.

stress.

Don’t you hate that one??? Fortunately for me, I didn’t have to endure that nonsense. I can’t recall a time when I had one of my episodes when I was remotely stressed. But there ARE times when I’m pretty stressed and do not feel even remotely like I’m going to puke my guts out and faint!

What I have, is most likely an autonomic nervous system disorder called POTS or Postural Orthostatic Tachycardia Syndrome. In plain English, it means that my heart has a tendency to beat faster while standing. That part doesn’t happen all the time, but what was discovered during the test is that under certain conditions that are not completely understood, my blood pressure goes all wackadoodle. To put it mildly. And that is what’s causing my unpleasant symptoms and feeling like I’m about to faint.

To be clear. It is episodic, like people who get migraines.

 

 

 

 

 

 

 

 

 

 

What happened is that they put me on a table just like this one that tilts up about 60 degrees. For the first part of the test, I was horizontal and all hooked up with EKG, monitors and an IV.

Everything was just fine. Pretty normal.

And then they tilted me up and everything was still fine. Although at home, my pulse does go up considerably from reclining to standing– quite often. But since this was when it counted, that didn’t happen. And that makes sense too, because this doesn’t happen to me every day. Thank God. There are those that these symptoms do happen on a daily basis and they are pretty much bed-ridden.

The second part of the test, they put a little nitroglycerin under my tongue which was fun.

Almost immediately, I could feel my heart beating super fast and a minute later, it felt like my head was trying to take off while my feet were glued to the ground but soon I knew that two more seconds of this exercise and I was going to pass out.

 

That’s the part that’s not normal.

 

That’s not supposed to happen. Even with the nitro, the blood pressure shouldn’t drop like that. But my BP fell 100 points in just a few seconds. And no worries. The doctor and his nurse were watching everything with intense focus. And of course, they could see on their monitors exactly what was going on.

They lowered the table immediately and with every inch it went down to horizontal, I felt better and better. In fact really good because nitro apparently, is like a shot of adrenaline. But believe me. I did crash later on. Fortunately, I did not get nauseous. I was so worried about that one, but my tummy behaved.

So, now what? I am going to see my primary care doctor in a few days to come up with a plan– maybe some meds. There’s no cure for this. Only management. I’ve actually had this for years. The first time was in 2010 and I was at an outdoor restaurant with Elaine when I suddenly became quite ill. Got up to use the latrine, but fainted on the way there. They did take me to the hospital and said that I was dehydrated. Rolling my eyes. I wasn’t dehydrated enough to pass out! I’ve come close to it several times since, but know how to avoid that now.

Alas. Most of the time. I’m absolutely fine. And even when I feel a little-not-so-fine, I feel extremely blessed. This is nothing.

Unlike my dear friend Elaine who died 2.5 years ago. (how is that possible?), whenever there’s something up medically, both physically and mentally, I enjoy researching it. In fact, while Elaine didn’t want to know anything about her lung cancer condition, I did and researched it for hours.

Now, is there something else going on? So far, they haven’t discovered anything and I’ve had numerous blood tests, echo-cardiogram, a chest xray and two CT scans of my head.

Thank you, thank you all for your concern and well-wishes. We all have stuff going on. But I brought this up for two reasons.

1) So that some would read and stop writing me for advice. It’s overwhelming.
2) This is something that often goes undiagnosed for years and it is under-diagnosed. So, maybe my experience can help others who might be going through something similar.

Blessings to All!

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