way above and beyond

Well, if I didn’t think my primary care doctor deserved medals, ticker tape parades, and a statue on the town green before, I do now.  I went in with my list of crap, which included “this pounding heart thing”.  Now, a word about that.  This pounding heart thing has been creeping up on me.  For a while now I’ve noticed that when something alarms or upsets me, like a loud noise or an unexpected brake light (we’re not talking deeply upsetting here, just one of those “gaaaa!” moments is sufficient now to trigger it), I’ve been having a rather strong physical response.  Specifically, my heart just gets a’ pounding and doesn’t let up for some minutes.  Didn’t think much of it.  Until it started happening more and more often.  Most recently, it was triggered by someone dropping a clipboard on a floor near me, watching a TV show where someone was being chased (a TV show I’ve seen before and didn’t react like that to), and listening to a “scary” part of a children’s audiobook.  Yep.  Children’s book.  Scary!  When these moments happen, I am not usually feeling highly emotional.  E.g. the clipboard or my cell phone chiming to let me know I have a voicemail after a phone call came in.  Sure, it happens when I’m angry or feeling very apprehensive too, or when I get an email from our new secretary freaking out about a project that came in when I was on vacation when our supervisor specifically told the office to send any projects like that to her during my vacation.  But major annoyance, while annoying, does not usually make my heart flip the hell out.

So what the hell is this?   I’m having a hell of a lot of PVC type “flip flops” right now too.  They’ve gone together with the pounding.  Like the pounding, these are happening more often (I mentioned that right?  Multiple times a day now?).  And I’m having shortness of breath when the pounding thing happens.  Oh and the last bit, I have chest pain when it’s been going on for about 5 minutes.  Not horrible “oh my god I’m dying” chest pain but a knot of pain that is unmistakably painful.

When I made this appointment, they had started becoming more frequent and intense.  By the  time I got in today, I had just had this shit going on solid for 5 days.  And I was like “Ok, I guess we should talk about this first…” and lay this all out for him, children’s book and all.  Bam.  Poor primary care, talk about dropping a bomb on him.  I did mention it in my visit request, but truly, if things had been this bad when I made the appointment, I’d have stressed the urgency and not requested it as  a “check up” kind of visit.  He got to hear the flip flopping thing (PVCs perhaps) although I didn’t have either pounding or flopping when I was being EKG’ed, of course not, and this is why I don’t go to the ER for this.

So he said “ok kiddo, you can either go across the street to the ER or I can send you down the road to the cardiologists’ office where they said they can do an echo right now.”  I hemmed and hawed a little, because he added that he didn’t want me driving anywhere by myself right now.  “Uh, if I go to that hospital, it’s $200 for me to walk into the ED and at least $150 more for every cardiac test they run.”  So he says “I will drive you to the cardiologist.”

No shit.  I was so taken aback.  In the end, his office coordinator ended up driving me over AND back.  Holy shit, can you believe it?  I need to send them flowers.  At least.

I’d like to think this is all just stress, well no, I what I’d really like is for it to stop happening, but it is and I’d like an explanation that is not that my autonomic dysfunction has decided to target my heart now.  My primary care was mostly worried about a vascular event, I know this because he kept talking about wanting a measurement of my aorta.  Ultimately, whatever it is, as with all things with me, it seems there will be no easy answer.  The cardiologist finally read the echo (hours later, yay) and apparently my aorta is ok.  So, I’m following up with cardiology tomorrow.  “I won’t be able to get an appointment tomorrow,” I told my primary care when he said for me to see them tomorrow.  “Oh no, WE’LL get you an appointment tomorrow” he said, chuckling.  His secretary called me less than a half hour after I left to tell me I have an appointment with the cardiologist tomorrow.

Ironic drive home music?  Bonnie Tyler’s Total Eclipse of the Heart.


2/20/14 update:  This morning’s trigger, mixing a sound clip of Henny Youngman and The Circle Jerks’ Operation for a CD I’m making for a friend.  I always get a little thrill when an audio mix comes out particularly good.  Today, that little thrill resulted in a sustained heart rate of  110.

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  1. I love your PCP! He’s the one I want to steal so badly. Oh, this new one I have is so sucky I would write a post if not so drained.

    Don’t you already have a Dx of POTS? I know you pass out, so figured tachycardia was a normal thing. Maybe it was OI that you got diagnosed with, but it sounds more like POTS to me. As a side note, I don’t have POTS (how rare) and only very mild OI, but I’m always slightly tachycardic and have been for as long as I can remember; it’s always at least 100 (resting) if I recall which is way too high for someone like me, especially when I used to be at the gym 6 days a week. I think it’s from the EDS, plus I have the messy echos with the leaky valves and the lovely aneurysm. So, welcome to the crappy, EDS heart club! I have no idea what they do for that–beta blockers? Oh, do stay away from high-dose B12 as I got those exact symptoms, plus shortness of breath and couldn’t walk across Wally World due to some weird fatigue–cardio confirmed it was from the B12 and I take a much smaller dose now. Years ago, a crappy doc put me on compounded thyroid meds and I got HYPERthyroid and the same thing. Rather freaky and I passed out in the hallway from the latter ordeal and came to with MM screaming in my face. 🙂

    Don’t you wish new surprises from this damn disease would just stop coming. It’s like when Moush was an indoor/outdoor cat and brought those unwanted sewer rats as presents. No more presents or “scary” things (ha).

    • It’s just like scary presents from a cat. You wake up and it’s like “Oh what the hell is THAT?!”

      I have “officially” been diagnosed with POTS. I finally made the cut, heart rate went up enough with prolonged standing on the tilt test. But this is happening even when I’m not up. So it could just be the POTS breaking loose and running all over the place I guess. Saw a cardiologist yesterday, he got me hooked up with a holter monitor, so we can see if this is just plain old tachycardia/elevated heart rate or a screwy rhythm.

      • Got ya. Well, I don’t know. I do know people’s BP is all over the place with POTS so maybe the ol’ heart follows suit? That racing heart feeling really freaks me out, so I hear you. Oh, don’t ever get anesthetic from the dentist with epinephrine in it either, which all the new ones seem to have. Holy crap. I was flying to the moon while about to pass out all at the same time. I think I survived by being fully reclined in the chair or I would have cracked my forehead open (again). I somehow remembered that feeling from something else with epi in it (did I tell you this already) and asked if that’s what was in it, to which the asst said, “No.” Yes, it was full of it when I Googled it: Articaine (and still couldn’t get numb). What a ride… Like a sewer rat landed on my head.

        Well, hope you don’t have anything wrong rhythm-wise, not that POTS sounds like any fun at all. Fingers crossed. ><

      • Jeez, that dental experience sounds horrible. I passed out at the dentist once, recently, still not sure if it was the anesthetic or just that he did some digging on his way in to the nerve. Although they usually do and I don’t usually pass out.

        Sometimes the people who work in medical offices are shockingly ignorant. And ignorant is ok, I mean not everyone can know everything, but know the limits of your knowledge people! “Oh no, no speed in that at all!”

  2. Your experience sounds worse, yikes. EDSers don’t get numb and I don’t quite understand that, but I’ve always felt the drill since my 20s or so. Anyway, I don’t get the ignorance, either. I could be selling chicle in the streets (the gum the street kids in Mexico all sell if you haven’t been) and I’d know every flavor, the ingredients, and yada yada. I live in a really stupid state and it shows–I think our education system is dead last now. I love my new dentist so I’m sticking with him, even though the last time his asst told me, “I bet if you had kids you wouldn’t be nocturnal,” in response to my complaints about appts during the day. Really? I worked full-time and went to grad school full-time and slept 30 mins a night due to my crappy ANS so I don’t think having pre-term babies with EDS would solve that dumb ass, and how old did she think I was? Argh! I hate idiots; I’ve lost all patience at this point. Oh, so funny about the speed. This is why I never get drug addicts, either. We must get a total different experience than the normies because I get super sick from narcotics and have to refuse the Rx before surgery even. So, no oxy, speed, get the dry mouth from my psuedo-Sjogren’s so have to pass on weed, blow is probably out with all the CEDS-y nose bleeds… I might have to give glue sniffing a try again if you recall that old post. I have loads of super glue leftover from my little accident. Haha. 🙂

    • I do get numb, thank frikkin god. I takes a lot though, usually at least two shots. Sometimes more.

      Yep. I can’t do drugs anymore either. Not that I ever did a ton, but pot and me do NOT mix at all anymore so that had to go along with booze. Is alcohol intolerance typical specifically for EDS-ers or is it just a generic autonomic thing? ’cause boy do I have it.

      • Lol. I never did drugs believe it or not; I was just around them in other ways. I did drink way too much malt liquor back in the day and only gave that up when I started to get barf-y sick from it around 21–funny age to stop drinking, but a good thing. A couple years ago I’d drink a cup of sake at night to escape my current nightmare for a few minutes, but I got a chronic sore throat so it’s out–presume GERD and assume from all alcohol. But, no on the alcohol/EDS connection from my vantage point as I had a very high tolerance from the get-go. My EDS grandpa (now passed) and mother are/were both alcoholics, but I luckily didn’t get that addictive gene so quitting was easy. My father with all the ANS issues can’t drink at all, but no EDS over there at all. I would say he has an “intolerance” like you stated. So, in your case I think it’s due to autonomic dysfunction in all honesty. It would be nice to just drink all my pain away; I swear that was what my grandpa did.

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