lab rat…

I like free shit.

So much that I occasionally make less-than-wise decisions based on my interest in said free shit. That’s how I found myself as a lab rat in a clinical study.

I initially called to find out more about the clinical trial studying the effects of ivabradine on hyperadrenergic postural orthostatic tachycardia syndrome (POTS) in order to share information with some POTS friends. Because I had never been diagnosed with hyperadrenergic POTS (hyper-POTS), I had no reason to think I would qualify for the study. But as an admin in a couple POTS Facebook groups, I felt it was my duty to provide details about the study to group members who might be interested.

So during my initial call, I discussed the study requirements and schedule with the research coordinator with the intention of encouraging group members to participate. When the research coordinator asked if I was interested, I was honest that I didn’t think I would meet the requirements because I had no reason to think I had hyper-POTS. As you may remember from my previous post, hyper-POTS is diagnosed based on norepinephrine (NE) levels, sometimes in combination with an increase in standing blood pressure.

According to the researcher, an NE test would occur at the first visit to confirm the hyper-POTS diagnosis. I could come in for the NE test, she said, and if my NE levels didn’t meet the requisite 600 pg/ml, I wouldn’t be invited to participate in the study.

I have always wanted to have the NE test. Ever since I first developed POTS symptoms I have felt like I have a lot of adrenaline, but I assumed that was normal for POTS. No one ever indicated otherwise, and my doctors never suggested I should be tested for hyper-POTS. But even thinking I didn’t have measurably high NE levels, I was still curious how I measured up. Needless to say, when the researcher offered the opportunity to have the NE test on the study’s dime, I was intrigued.

The research university conducting the ivabradine study is the same one that conducted the clinical study for my mom’s degenerative brain disease. For over 18 months, she and I went to their lab for 1-5 days per month, sometimes for 7-8 hours per day. We were forced to drop out abruptly after she suffered a particularly bad fall, and thus never got to say goodbye. We also never got to use our last $5.00 food/drink voucher, which I have held on to since because…free shit.

The study involves comparing the effects of ivabradine vs. placebo on hyper-POTS. As you might remember, ivabradine was approved by the FDA in 2015 for the treatment of heart failure, but still has not been approved for POTS. Most insurance plans will not cover it, and paying out of pocket can set you back hundreds of dollars per month. This study hopes to prove ivabradine is effective in treating hyper-POTS, ultimately making it easier for POTS patients to obtain in the future.

Study participants are first required to undergo a tilt table test to confirm their POTS diagnosis, and then are given either ivabradine or a placebo for a month, then a short washout period. Then participants will be given either ivabradine or placebo – whichever they didn’t receive in the first month – for a month. So that if you received the placebo in the first month, you receive ivabradine for the next month. The study is double-blind, so neither the participants nor the study doctor/administrators know when each participant receives the drug. The effects of ivabradine vs. the placebo are measured throughout the study via additional NE tests, orthostatic vitals (lying and standing heart rate and blood pressure), and quality of life questionnaires. 

To be honest, I had no intention of participating in the study. I didn’t want to have to undergo the tilt table test, and I wasn’t anxious to take a placebo, and possibly a drug, that wouldn’t address my symptoms. In my mind, I was going to go in, say hi to all the people who took care of my mom during her study, maybe get $5.00 worth of free food from their cafeteria using my voucher, and get a free NE test. When the test came back with results under 600 pg/ml, I would be told that I don’t qualify, I cannot participate, but thanks for coming in. Win-win.

So when my NE test results came back showing NE levels much, much higher than 600, my plan quickly went downhill.

Faced with the decision whether to participate in the study once I qualified, I realized that, like most things in life, this could be a great adventure, if I treated it as such.  I didn’t choose to have POTS, and I certainly didn’t choose to have hyper-POTS, but here we are. I don’t believe in fate, but I believe in finding meaning in suffering. Maybe this is mine.

Because only a small subset of POTS patients have hyper-POTS, and an even smaller portion
live here in southern California, the university is having a difficult time enrolling enough participants. There are probably tens of thousands of POTS patients around the world  that would love to have the opportunity I have been given. I owe it to them to pursue it. After all, if I can be an anecdote in the history book of POTS, if I can play a small role in finding better treatment for POTS patients…..I mean, that’s the goal, right? To leave the world a better place than it was when we arrived? That’s the whole point of life.

That and all the free shit.

“In some ways, suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.” – Viktor Frankl

Smell ya later.
– Linds