The Dysautonomia Hunt Begins…

The Dysautonomia Hunt Begins…

And 2017 is off to just as fabulous a start as 2016 was. (That was sarcasm.) Only the third day in and I’m already being given a million-dollar workup.

img_0901I’m having a difficult time deciding where to begin. There’s a whole ton of information flying through my head that I’m having trouble keeping track of. Not to mention I’m so overwhelmed I can barely think.

I called last Thursday to schedule an appointment with a cardiologist and got in quickly because I had just had the Holter monitor. And today was the big day.

David dropped me off at the front entrance because I knew I wouldn’t be able to walk that far from the parking garage. Luckily, the place I needed to be for my ECG was literally right there when I walked in. How convenient. After a 10-minute wait in the ladies locker room (since the ladies have to change into gowns, but the men do not), I was called in for my ECG, which took approximately two minutes from the time I lay down on the table, and most of that time was spent putting the leads on.

Then it was off to my appointment with the cardiologist. I was really excited to see this guy, since he is the Medical Director of the Syncope Center at the hospital. First a nurse did orthostatics (blood pressure and pulse lying down, then sitting up, then standing.) My blood pressure was nice and steady, but my pulse jumped from 78 to 100 between lying down and standing. It’s not technically orthostatic, since I’m an adult, but it’s still a bigger jump than a normal individual.


We didn’t have to wait long for Dr. J to come in. Very nice man, and definitely knowledgeable. You could just tell this guy knows his stuff in his area of specialty. I explained that suddenly out of the blue two weeks ago, I started noticing I was tachycardic from doing tasks that shouldn’t induce tachycardia, like getting up and walking into the kitchen, or standing for a long period of time. With the tachycardia, I was also experiencing lightheadedness, dizziness, seeing stars, sometimes a headache, and sometimes feeling near to passing out. That’s why I went to the ED and had the Holter monitor placed. We went through my meds and he listened to my heart as I sat up and then laid back down. Then he said he’d be right back with some pamphlets.

At this point, David and I just looked at each other. We were both feeling the same thing; that he was just going to tell me to increase my sodium and fluid intake. I already knew to do that and I was trying. I felt myself start to choke up at the thought of being blown off by a doctor when I KNOW something is wrong.

But we were surprised when he came back in. He said my Holter monitor was pretty much normal; no arrhythmias, but several episodes of sinus tachycardia (that were occurring when I was doing things that shouldn’t induce tachycardia.) So he wants to rule out “inappropriate sinus tachycardia” and possibly glean more information from having me wear another monitor, this time for 2-3 weeks. It will arrive at our house via UPS once it’s approved by insurance. I’m so thrilled I can hardly contain myself.

Then he went through the other tests he wants me to do, each of which will work towards narrowing down what the cause of this sudden orthostatic intolerance/dysautonomia is. It could be from my medications, it could be from being under so much anesthesia last year (I added it up and I spent 7-8 hours under between my three surgeries), or it could be who knows why.

  • First, an echocardiogram and chest x-ray to rule out structural problems with my heart.
  • Then something called a blood volume test, which involves injecting a radioactive tracer called iodinated-RISA into my body and then taking blood samples to determine if the amount of blood in my body is appropriate for my gender, height, and weight. It should take about an hour.
  • Then a hemodynamic test, which involves injecting a radioactive isotope (99-m-Technetium, which I vaguely remember learning about in pharmacy school). Then something called a gamma camera detects the radiation and forms images that can measure the function of the heart and speed and volume of circulation. It should also take about an hour.
  • Then the QSART test; here’s a good explanation: “The QSART is a test that measures the autonomic nerves that control sweating. The test is useful in assessing autonomic nervous system disorders, peripheral neuropathies and some types of pain disorders. The test requires a mild electrical stimulation on the skin called iontophoresis, which allows acetylcholine, a naturally occurring chemical, to stimulate sweat glands. The QSART measures the volume of sweat produced by this stimulation.”
  • Then a tilt table test, if it is okayed by Dr. Bain (because, in the words of Dr. J, “Stents don’t like low blood pressure.”) This one measures your heart rate and blood pressure minute to minute as the table is tilted at different levels.

I also have to increase my sodium intake to 5 g a day (which is a ridiculous amount of salt) and drink two liters of Gatorade a day. Better invest in the low-calorie stuff or I’m gonna get a bit pudgy! And he wants me to get fitted for compression socks, which apparently are only fitted at our pharmacies on certain days of the week between certain hours, so that’s going to be difficult.

I wasn’t able to schedule my tests because the scheduler was still on vacation. So I’ll call tomorrow. But I was able to get my chest x-ray and echocardiogram. My echo wasn’t scheduled until 12:30 pm, but I showed up around 11:15 am to let them know I was there in case they could fit me in. And indeed they did! I got paged to “approach the double doors” at 11:30 am and I was done by noon!

And now I’m just overwhelmed and I can’t think anymore. I’ll write about my feelings at another time. Or maybe I won’t. Depends on whether or not my brain short-circuits first from all this new information.

In summary: something else is wrong. And we’re doing our best to find out what is causing it and how to treat it.


9 thoughts on “The Dysautonomia Hunt Begins…

  1. I’m so glad that you have a doctor who believes you and who is doing all he can to help you sort things out! That is the best possible way to get help (as you know). I hope this is the final piece to the puzzle which puts you on the road to recovery!!

    On a totally different note. My doctors now think what I have is Endometriosis and I told them I’m not letting them operate on me, I’m going straight to Dr Sinervo. I keep re-reading your blogs to give me strength for that! Thank you for continuing to share your journey.

    1. Thanks Emma! I’m hopeful that things will get figured out soon. And YAY for going straight to Dr. Sinervo! You won’t regret it for a second. I’m so glad my blogs are able to give you confidence in him! Feel free to ask me any questions about the process moving forward if you have them!?

  2. Good luck with all your tests Laura – looks very comprehensive. I’m seeing a new cardiologist who specializes in syncope in Feb – be interesting to see if he recommends anything similar for me. Though I’m in Australia and things are not quite as well set up for dysautonomia over here (or at least they don’t seem to be).

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