When I heard the name of it, I giggled because I’m just so mature. POTS stands for postural orthostatic tachycardia syndrome. It’s a form of dysautonomia, which is a dysunction of the autonomic nervous system (ANS). The autonomic nervous system controls all of your body’s automatic processes like heart rate, blood pressure, digestion, circulation, body temperature regulation, bladder functions, etc. The requirement for a diagnosis of POTS is that a person must have a 30+ beat per minute increase, or over 120, within 10 minutes of standing. We also found that I have inappropriate sinus tachycardia (IST – resting heart rate over 100) which is another form of dysautonomia. Luckily, that has gotten a little bit better with my new medication.
The tilt table test is very effective for diagnosing POTS and other forms of dysautonomia. My test was a nightmare. I had it done in the fall of 2014. I truly didn’t think it would be that bad. They strap you to a table, start an IV in case they have to quickly give you medication, put on a blood pressure cuff, EKG, and pulse ox. They leave you laying down for a little bit to kind of calm the body down. First, they tilt you up to 30 degrees and measure your heart rate and blood pressure. After a few minutes, they tilt you to 70 degrees and begin monitoring your vitals closely. This is when the symptoms should start if you have anything wrong with your ANS. I didn’t feel too bad for the first minute or so and then my heart rate took off, I could feel it beating so hard in my chest and in my throat. I was nauseous, sweaty, had chills, my body felt weak, my blood was pooling in my legs and feet, and at 19 minutes in they had to put me down because I started to black out, and my heart rate went to 172 and my blood pressure dropped to 82/48 roughly. We had a pretty definitive answer, but didn’t receive the actual diagnosis until the next time I saw the doctor. Official diagnosis came in December of 2014. But he still wanted to do more testing and have me see other doctors to rule out things that can mimic POTS, like a rare adrenal gland tumor called a pheochromocytoma (luckily I don’t have that). Tests, tests, tests…. and more tests. I had a QSART, which is a test that measures the autonomic nerves that control sweating. It can also help determine whether or not you have some type of peripheral neuropathy. They put a few little sticky patches on a few different parts of your body and they stimulate your skin with a current, which they said would very mild (liars!) but it felt like 1000 bee stings. My results were normal. My doctor, not satisfied with the results of the QSART (because he thought that I had neuropathy), ordered a thermoregulatory sweat test (TST). This was in April 2015 (before I started losing weight like crazy). It was so bizarre. Definitely the weirdest test I have ever had. They give you a paper bikini, you lay on a table, and they cover your whole body with yellowish powder. This powder will turn purple wherever you sweat. They then put you in a 100+ degree box, and monitor your internal body temperature with a thermometer, and your external body temperature. The theory behind this test is that the sweating pattern can be indicative of certain types of neuropathy. I thought I was going to pass out laying there. I don’t do well in prolonged heat so that was just… yuck. But I wanted to make it the full hour so the results would be accurate. After the hour was up, the nurse pulled me out of the box and she said “wow!” I hadn’t seen anything because I couldn’t lift my head yet. When I was finally able to get up, I looked in the mirror, and I didn’t sweat from the waist down except my knee caps (that’s random haha), and my sweating was patchy on my hands and stomach, and then I sweat profusely from the chest up. Showering that stuff off was horrible. It stained my skin for a few days. I’m going to share this pic with you even though it’s incredibly embarrassing. It’s just too funny not to. Most people who have nothing wrong come out with normal sweating all over, so pretty purple. Well….
(Gotta love that awful paper bikini.) My feet were also still cold after getting out of there which is highly abnormal. My upper chest is how my whole body should’ve looked if my nerves were normal. And check out my forehead! Whew I didn’t realize how sweaty I get. Sorry, people who come in to contact with me in the summer time haha. My doctor was fairly confident at this point that I have small fiber/autonomic neuropathy. So he ordered a skin punch biopsy. That test wasn’t too bad. They take samples from 3 spots on your leg: outside upper thigh, outside knee, outside ankle. They numb you with lidocaine and then you feel nothing. They healed well. The results of this test were very strange to me, and the doctor was surprised… it was normal. The doctor said that even though the skin punch biopsy is the “gold standard” for diagnosing small fiber neuropathy, it is not perfect. If they take a sample from a part of your leg where the nerves aren’t damaged, it can cause a false negative. So he’s going with the diagnosis from the TST.
We are still investigating the cause of my dysautonomia, and my neuropathy. Normally, if you treat the cause, the secondary issues (dysautonomia, neuropathy) will improve. I’ve had so many tests done and we don’t know, so that’s frustrating. I didn’t just wake up one day and have this. It happened gradually over time. Now it’s just steadily getting worse. I think there’s something going on with my immune system but who the heck knows.
Here is my Go Fund Me in case anyone would like to help, or even just sharing my story is plenty =)
Also, here is the link to my YouTube channel… it’s mostly a video diary but I’m also using it to bring awareness to dysautonomia/POTS and the various things that go along with it, as well as mental illness, and the cross-section between chronic illness and mental illness.
My most recent video. I know I look a mess but that’s okay.