The mystery continues.

2 days off of eplerenone and 4 20 mEq doses of potassium later, I can say that I feel (almost) back to normal. Blood pressure is running consistently 120s-130s/70s-80s, just like a normal person. Muscle spasm and headache almost entirely gone.

And while overall that’s good news, the following questions remain:

  1. Why did eplerenone, an anti-hypertensive, cause my BP to go up?
  2. Why do I keep dumping potassium?
  3. Why do I have mildly elevated aldosterone and mildly low renin, if I’m not responding positively to the category of drug typically prescribed to treat this?

And yeah, there are probably more questions. And there are probably no answers in sight for the foreseeable future. And I’m exhausted just thinking about it.

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Failed.

After a potassium crash, my doctor increased the eplerenone to 25mg twice a day. Guess what? My blood pressure went HIGHER.

So now we’re doing an experiment: no eplerenone, potassium 20 MEQ twice a day, see what happens.

This just doesn’t seem to get any easier. It’s tiresome. Really, really tiresome.

Drugged.

So it’s come to this: 25mg Eplerenone once a day, and for the time being, no potassium pills. I started on 12.5mg and could tell that that wasn’t enough – this time around, I’m getting a bilateral trapezius muscle spasm, cramps in my feet and legs, and some digestive symptoms when the potassium drops too low. “Too low” for me means below 4.0 – it does not mean “below the lab reference range” which for most labs I’ve encountered is 3.6-5.2. My sweet spot seems to be 4.5-4.8, and keeping it there is a bit of a challenge. When I sensed that it was dropping, my doctor had me up the Eplerenone dose to 25mg – still considered sub-therapeutic for most, but then based on size alone, “most” are not me.

I’ve been on 25mg for 6 days now. The low potassium symptoms have mostly gone away. The first 4 days I had a lot of stomach upset, the 4th day I felt like I was having an out-of-body experience all day – I was sooooooo spacey! Yesterday, the 5th day, I woke up feeling clear-headed and without any muscle cramps, but still had some stomach trouble. Today – so far I’m feeling pretty much like myself all around. Here’s hoping it lasts.

As for hard numbers – we’re not sure at this point why I have this pattern, but my BP is staying in the mid-130s/high-80s range during the day, then daily, as predictable as clockwork, drops to 120s/70s-low-80s after the sun goes down. I’m not checking potassium again until the 20th, unless my symptoms signify a drop – I’m really trying to see if I can rely on “listening to my body” for this rather than weekly or twice-weekly blood draws. I think I’ve lived with this beast long enough that I can sense when it’s approaching, and surprisingly, my doctor is on board with this experiment.

And as for my doctor – for now I’m letting my primary care doctor manage this. As mentioned before, I have little confidence in the endocrinologist’s familiarity with this disease. Not to mention I hate going to his office (grouchy staff, crowded waiting room, expensive parking, a downer all around). And there’s the fact that I just can’t afford him. He bills my insurance company $650 for ten minutes of his time, of which I’m on the line for $150 each visit. I’m not a rich person and this isn’t a designer disease; I need to find a not-rich-person’s way to manage it.