Wordy Wednesday: Why I Hate Many Specialists/Explaining What POTS *Really* is

I'm going to lose it one of these days.

I posted a picture for Wordless Wednesday this morning, but then something happened that requires MANY words.

Today's specialist appointment.

In my (fairly vast) experience, specialist appointments are either amazing or horrible.

Today's was HORRIBLE.

Disclaimer: before I start ranting, know that I'm talking about the BAD specialists. Yes, there are amazing specialists - I've seen a few of them myself! So don't think I'm saying that all specialists are bad. I'm just focusing on the bad ones right now. Okay? Okay.

I'm just so completely sick of arrogant specialists.


The ones that waltz in to the room like they're the king (or queen) of the world.

The ones that act like they know more about your life and your body than you do.

The ones that won't humble themselves and admit when they don't know something that you do.

Today, I saw a cardiologist. I wanted to see a certain one that had been recommended to me, but my family doctor insisted that I should go to this guy because he had a shorter waiting list.

Hmmm, I wonder why that is.

I was told (verbally AND in a written letter) by my geneticist (one of the few wonderful specialists I've seen) that she strongly suspected POTS (Postural Orthostatic Tachycardia Syndrome) and I needed to be immediately put on beta-blockers to slow my bad tachycardia (very rapid heart rate). She said she'd diagnose me herself with POTS except that I need a special test called a Tilt Table Test (TTT) to officially confirm it. My neurosurgeon (one of only a few true EDS experts in the entire WORLD) agreed with her. Ugh, so many hoops to jump through.

Basically, a TTT is a test where you're strapped to a table-like surface and... umm... tilted...? Here's a video cause I haven't had it yet so it's hard to explain.



Anyways, they closely monitor your heart rate (HR) and blood pressure (BP) and probably other vitals, too. They want to pay attention to your BP, yes, because that's often part of POTS, but your HR is the most important because the only criteria you have to meet to have POTS only involves your HR. 

To clarify what POTS even is (taken from an amazing POTS website, dinet.org):

"...There are disorders that affect the body's ability to appropriately adjust to the pull of gravity. When the body cannot effectively adjust to upright posture, a person is said to have orthostatic intolerance. Postural orthostatic tachycardia syndrome (POTS) is a disorder characterized by orthostatic intolerance.
"Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

Okay, now that the actual criteria for diagnosing POTS is understood, let me start at the beginning of today.

I dragged myself out of bed early this morning after getting very little sleep (because I'm an insomniac apparently), after being greeted by this:

I also set my clock radio... to static.

Okay, I won't bore you with more details from before I even see the specialist. Basically, I wasted a lot of time and bus money to get there, though.

When I got there, I filled in paperwork for probably at least half an hour, and then waited a bit longer before I was taken in to a room. A nice lady did an EKG, which came out normal. I was expecting this though, because my problem isn't when I'm laying flat on my back doing nothing - it's when I stand up after laying down and everything goes so white that I can't see, and my head starts pouding, and I feel sick, and the room is spinning, and...

Anyways, she left, and the specialist came into see me briefly. Let's just call him Dr. B. I can't remember exactly what he said, but it was just along the lines of explaining that I was going to do a treadmill test. ...Okay then, not sure what that has to do with POTS, but fine...

I finally ended up in another room with another lady tech, and she hooked me up to the machine with all those lovely sticky-cup thingys and a BP cuff on one arm. She told me to get on the treadmill and hold onto the bar at the front, and that the test would go in stages, progressively faster. Long story short, the maximum HR they wanted to get me to was 170bpm. After approximately 7ish minutes (barely into the 3rd/fast job stage) she stopped it early because my HR was already 178bpm. Okaaayyy...

When I finally saw Dr. B again, he sat me down and proceeded to tell me what SO many other specialists had (falsely) told me when I was going through the process of being diagnosed with EDS:

"you don't have it [POTS]; you're fine."

I wanted to scream.

He also told me that I don't have dysautonomia (POTS is just one part of this) of any sort because I don't have any symptoms of it. After he'd seem me for maybe 5 minutes total, and didn't do ANY tests or even observations to be able to say this. Like, I can't even explain it... it actually didn't make ANY logical sense.

The rest of our conversation went something close to this:

I asked him why he thought that I didn't have POTS.

Your blood pressure was normal throughout the whole test.

That isn't part of a POTS diagnosis though...

Yes it is. It's called Postural Orthostatic Tachycardia Syndrome!

In my head: **OMG HE DOESN'T EVEN KNOW WHAT ORTHOSTATIC MEANS. OMG. OMG. /FACEPALM.**

I'm still in shock.

Also, side note to back up my claim (also from dinet.org):

"Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS."

Do I have to have this tattooed on my forehead?!

Hopefully not. Not my best look.

But you didn't even measure my heart rate laying and then standing... that's when my problems happen!

We did the treadmill test, and that would show it just fine. And it didn't show anything abnormal. Tilt table tests are uncommon and unnecessary.

Well what about my high resting heart rate?

It wasn't! It was around 100bpm when you started, and that's normal.

*eyes almost pop out of head* Umm... well actually I was turned away when I tried to donate blood because my resting heart rate was too high...

*ignores*

Well what about the episodes I was describing - where sometimes, I get this weird fluttering-but-not-quite feeling in my chest and I can't breathe? They only happen for about a second each time, but it happens anywhere between a few times a week to a few times a day. And one time in March, it lasted for about 4-5 seconds. My mum witnessed it and it was really scary. My chest felt really weird and jumpy and my face turned bright red because I couldn't breathe, and I had to sit down immediately.

That's normal. Everyone gets that. Plus, it's impossible that your heart stopped.

*in shock* ...I didn't say my heart stopped, I said it was hard to breathe...

*more dismissiveness* You just need to focus on your connective tissue problem (he obviously barely knew what EDS is because he was shocked when I said that I dislocate joints on a regular basis) and your upcoming surgery. *goes on rant about how amazing my neurosurgeon must be if he's from Maryland, because anyone who trains at John Hopkins (he's assuming that my NS trained there) are the most knowledgeable, blah blah blah blah...*

Well my neurosurgeon thinks that I have POTS...

*ignores*

Well, what do you say to my geneticist AND neurosurgeon wanting me on beta-blockers to control my tachycardia?

You don't have tachycardia! Your heart rate is normal. I don't prescribe beta-blockers to healthy people. You just need to cut out caffeine, drink more water, and exercise. You're just out of shape.

*tries to control urge to leap out of my chair and strangle him* I used to be an athlete!!

Yeah... USED to. *laughs*

...Well, bye. Nice. To. Meet. You.

*leaves office in tears*

Any here you have it, folks. This is just one of many examples to why I hate many specialists. 

-Sarah