research study update #1…

The research study that I am participating in – studying the effects of ivabradine (Corlanor) on hyperadrenergic postural orthostatic tachycardia syndrome (POTS) – is underway. As the study only lasts a couple months, I’m actually quickly approaching the halfway mark.

On the same day I was given the tilt table test and my POTS diagnosis was confirmed, I was given a generic white bottle which contains 5mg pills, although whether it’s 5mg of ivabradine or 5mg of bullshit, I won’t know until the end. I was instructed to take one pill twice a day. Two weeks later I went back for orthostatic testing. Because my heart rate is still too high, my dose was increased to 7.5mg twice per day. This is the third week, and next week I will return to the clinic for orthostatic vitals and another norepinephrine (NE) test to determine whether my NE levels are any different on the drug or placebo – whatever I’m currently taking. At that same visit I will return my pill bottle, and the week-long washout period will begin. A week later I will return for another generic white bottle of pills.

For the past three weeks I have spent a good portion of each day trying to determine if I am receiving ivabradine or the placebo. If I’m on ivabradine, I expected my resting heart rate would be lower. Because I’m so sensitive to medication, even a small dose of beta blocker drops my HR into the 50s. But we already had to increase the dose to 7.5mg and my resting HR is still averaging high 70s, low 80s. Obviously, my standing HR is quite a bit higher. I’m also finding it quite difficult to climb just one flight of stairs, which is unusual. So, that seems to suggest I might be on the placebo. But if I’m on the placebo, that means I’m not currently taking any medication for my heart. I expected my resting HR would be in the 90s and that I would have a lot of palpitations. So, that seems to suggest I might be on ivabradine.

But my resting HR over the weekend was in the 110s and I couldn’t get it to come down, suggesting I might be on the placebo. But I have also been extremely tired lately, which could be a drug-related side effect, suggesting I might be on ivabradine. But I have also been waking up regularly with tachycardia, suggesting I might be on the placebo. But I have gained like 2 lbs, suggesting I might be experiencing drug-related weight gain. But I also ate a huge ice cream sandwich for dinner on Saturday, suggesting I might be an idiot.

So, yeah, that’s pretty much how every day of the past 3 weeks has gone. When you add all that up, I think it weighs in favor of not having any fricken clue.

More next week after my appointment.

“You cannot get through a single day without having an impact on the world around you. What you do makes a difference, and you have to decide what kind of difference you want to make.” – Jane Goodall

Smell ya later.
– Linds