As I already went over in Part One (which can be read here), the road to my autonomic testing appointment in a specialty autonomic disorders clinic was long and complicated, especially because it was an outside referral, but it finally happened!
To recap a little from the end of Part One, the testing involved a little preparation and holding certain medications, and I was also having a bit of a crash/symptom flare in the days leading up to it. This meant the actual day of testing was definitely not one of my best days, but this was probably a good thing (the doctor agreed) as it meant the testing could capture what goes on with me when my symptoms are at their worst.
In total, I was there for 2-3 hours, including the time to register and check in, get the tests set up, do the actual tests, recap a little after, and a then have little bit of recovery time. The tests done were:
- Cardiovascular testing with head-up tilt (essentially a tilt-table test), the Valsalva maneuver, and deep breathing
- Quantitative sudomotor axon reflex test (QSART)
I wasn’t really sure what these would all be like so I decided to approach it from the “curiosity” angle and just be ready to do whatever they told me to do. If you’d rather have some idea what it’s all like, read on!
For the first three tests I was lying down on a cloth-covered table with a tech specialist running things. For the head-up tilt, which the doctor came in for, I was strapped to the table and tilted upwards. The first test they did was the…
Quantitative Sudomotor Axon Reflex Test (QSART)
For this test, four electrodes that essentially looked like clear, hollow donuts about an inch in diameter were strapped to four places on the right side of my body. (I asked the tech why the right side but she didn’t seem to be totally sure, and I decided it wasn’t worth using important doctor time to have this particular question answered.) I had been instructed to bathe/shower before the test and to not apply any lotions, creams, or oils to my skin (face, underarms, and hair were fine) so that my skin would be clean for this test. Even so, the tech still wiped the four areas down with acetone to get whatever oil my skin may have produced since my shower.
She then strapped an electrode to my inner wrist/forearm, the upper part of my outer calf, just above my inner ankle, and on the top of my foot. Once it seemed like they were securely attached, she injected acetylcholine (a neurotransmitter) into them. The electrodes hold the acetylcholine against your skin so it felt cold at first. It is important that they have a good seal so that none of the acetylcholine leaks out during the test as this can skew the results. The tech turned on a machine that was monitoring the electrodes and we could see that three were holding steady, but the one on my foot was leaking. She tightened the strap holding it on and we waited a few more minutes to make sure it was okay before continuing.
At this point she explained that a mild current would be used to make the acetylcholine stimulate sweating at the four locations, and the monitor would show if and how much sweat was produced. I was warned that the current might be a little painful, and this was indeed accurate. I don’t know how it is for everyone, but I found it to be pretty uncomfortable, but bearable. The tech asked about it and I told her that it felt hot and kind of “burn-y,” but also tingly and prickly. Luckily it was only on for five minutes, though then there were five minutes of something else with the electrodes still attached – maybe the current was off but we still had to sit there? I missed this explanation as I was just focusing on breathing through the discomfort (thanks, yoga!), but it slowly eased up over that second five minutes until we were able to remove everything. At this point the pain was gone, though I noticed after the other tests were done that there was a little bumpy red ring on my inner wrist – I guess that skin was a little more sensitive. It itched a little for a couple of days and then slowly faded away.
Cardiovascular Testing: Deep Breathing
At this point the tech got me all hooked up to the cardiovascular stuff: three electrodes (just the basic ones like an EKG, not the fancy ones from the QSART) on my left side and chest to monitor my heart rate/rhythm, a blood pressure cuff on my left arm, and a small blood pressure cuff on my right middle finger that would monitor my blood pressure continuously. This finger cuff required my hand to be warm and my fingers are almost always cold, so the tech got a heating pad to put under my hand which was quite cozy.
For the test I had to look at a small screen/light display straight in front of me (so above my face since I was lying on my back) for arrows instructing me when to breathe in and out. We did a practice run or two before doing two rounds for the official test. I was surprised how lightheaded and tingly I felt during this one, but it wasn’t too severe. I had a few minutes in between each practice round and test trial to recover and it didn’t take long each time.
I believe they look at heart rate and blood pressure variability between inhaling and exhaling to see if you are in the normal range or not. I know some variability is normal, and I apparently “barely passed” this test so I imagine it could trigger stronger symptoms in someone with abnormal results.
Cardiovascular Testing: Valsalva Maneuver
Still lying down on my back and hooked up to the same monitoring equipment, I now had to blow through a small plastic valve-type thing on the end of a tube that was basically the equivalent of blowing through something with a tiny hole in it. The same screen from the Deep Breathing test was now used to show a line that would rise and fall depending on the pressure I produced and a mark that showed the target pressure I had to maintain. I had to take a deep breath and blow through the tube for several seconds (10 or 15 I think) while maintaining that certain amount of pressure as the tech counted down until I could stop. Again, I got to practice a couple times for short periods to see what the screen would look like and to make sure I understood how it all worked.
During the first test trial, I came about as close to passing out as I think I ever have, but I was already lying down so that probably helped. I felt lightheaded and tingly, then my hearing became muffled and I got tunnel vision, and right as my vision started to completely black out I could hear the tech reach the end of the countdown and I could breathe normally again. It took several minutes this time for me to recover and feel ready to do the second test trial. While I was resting, the tech left the room to get a nurse to stay in the room for the next one. I thought I heard her say it was because the nurse hadn’t seen something like this happen during this test before, but I suspect it was more for my sake in case something went wrong. The second test trial went a teeny tiny bit better than the first as far as my symptoms went. We thought it was probably because I initially overshot the target pressure on the first trial and was more accurate on the second, so I had a little more breath left to use that time.
If you want to know more about what exactly is supposed to happen in the body during this test and why they measure it during autonomic testing, check out this explanation from Vanderbilt’s Autonomic Dysfunction Center.
After this test was done, I had another several minutes to recover while the tech went to let the doctor know that we were ready for the head-up tilt which he would be in the room for.
Cardiovascular Testing: Head-Up Tilt
For anyone who has heard about and/or had a tilt-table test, this was essentially that. I was still connected to the same monitoring equipment as the previous two tests, with an added strap across my lower body and one across my shoulders to hold me up in case I passed out. I’d had a tilt-table test before, but I hadn’t had to hold any medications and the strap was tight across my abdomen which made me feel like I couldn’t breathe properly, so I was glad to have another one.
After I was all strapped in, we waited several minutes to ensure they got a good baseline heart rate and blood pressure. Then they counted down and tilted the table up to a little shy of vertical. I believe the countdown was to make sure they could properly sync the tilt with the recordings of my blood pressure and heart rate. Since I had been lying down for at least an hour during the previous tests, I could pretty much feel my blood shift into my lower body and out of my head as the table tilted upwards. My heart rate jumped up pretty quickly, but my blood pressure initially held steady.
I didn’t feel too bad at first, but as the minutes ticked by I started to feel lightheaded and out of breath. The doctor also asked me questions now and then and talking made me feel worse. (He also talked about what he was seeing and asked, “How did this happen to you?!” and it may have been the most validated I’ve felt in a doctor’s office in a long time!) After several minutes had gone by I began to feel very limp and was glad the straps were holding me up. The tech and doctor noted that my feet were very purple showing that I had significant blood pooling, meaning the blood vessels in my legs and feet were not constricting like they should to help my blood defy gravity and properly circulate through the rest of my body. At one instant I suddenly felt a lot weaker and I saw the doctor and tech react to something on the monitor before I could say anything. The doctor decided to terminate the test shortly after that, so they did another countdown and lowered the table to a reclined position.
Similar to my other tilt-table test, I first felt like my head was lower than the rest of my body until I had been lying there for a few minutes. I believe my heart rate came back down to where it had been before the tilt pretty quickly and they monitored me for several minutes.
Recap and Recovery
After I had recovered a little bit, the doctor told me a little about my test results, though I got a lot more at a later appointment and when they sent me the test report. Basically all of my tests were at least borderline abnormal, with some neuropathy in my feet where I had decreased sweating, but my tilt test was the most abnormal. He said my heart rate had gone from a BPM (beats per minute) in the 80s-90s lying down (a little high for me compared to most days, but this was a “bad” day) to the 120s initially after the tilt, and to almost 160 after I had been upright for a while. Initially my blood pressure had held steady, but after a few minutes it started dropping, and towards the end it had suddenly dropped pretty low (I suspect this is what I felt and they saw on the monitor). He later said he stopped the test because he was certain that I would have passed out in the next 30 seconds otherwise.
During that appointment I was diagnosed with autonomic neuropathy, postural orthostatic tachycardia syndrome (POTS), progressive orthostatic hypotension, and reflex syncope (though I’ve never actually passed out because I feel the pre-syncope and have time to make adjustments). He also ordered several blood tests to look for a root cause of these disorders and prescribed fludrocortisone (generic Florinef) to try to increase my blood volume and ease my symptoms in the meantime. It took some extra work to figure out how to do these within my HMO, but I think I managed to get it all properly taken care of. I decided to focus on the tests first and saved the prescription for after my clinical appointment with the doctor a couple weeks later.
After the doctor had left the testing room, the tech offered me some juice, which I gladly accepted. She also let me stay seated on the table where I was sitting cross-legged until I felt steady enough to get up and move to a chair. I sat there a bit more before feeling ready to find my dad in the waiting area, where I sat a bit more and tried to eat some of the snacks I had brought along (I’d had to not eat for a few hours for the testing) before we finally went to the car and drove home. I expected to feel worse after all that testing than I did, but I was definitely pretty worn out and took it easy the next few days.
Your Turn!
Have you done autonomic testing? What was yours like? If you have it coming up and have any questions (or if you just have questions) please leave them below in the comments or feel free to contact me here!
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