Backsliding: POTS Edition

Backsliding: POTS Edition

Backsliding. A fairly common problem among certain chronic illnesses. This phenomenon occurs so often in the world of POTS that when it happens I can barely contain myself.

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I am completely over this month. I just want to take it and throw it in the trash, after stomping on it a few times. Thank goodness there’s only a week left.

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The Potassium

POTS
Giant potassium tablets!

Around the beginning of the month, I started on potassium supplementation. Why? Well, surprise, surprise, the Florinef dropped my level too much by causing me to get rid of too much potassium in my urine. (To be fair, that’s what Florinef does.) By the time I had my potassium tested on July 28th, it was down to 3.1 already. (Normal values per our lab are 3.7-5.1). I was surprised it had dropped so much in only two weeks, but there you have it. Thankfully, after two weeks on the supplements, my level came back at a nice 4.3. Unfortunately, this means I need to take that horrible potassium twice a day for the foreseeable future, or at least as long as I’m on the Florinef. Although per my POTS doctor, once I’m doing better (in the distant future), we can try tapering off the Florinef, so that means the potassium, too!

The EKG

Back on July 19th, I had my treadmill test so an exercise physiologist could create a custom cardiac rehab plan for me. I was hooked up to a 12-lead EKG the whole time. The tech had to keep adjusting the leads while he was running my pre-exercise EKG because the overseeing cardiologist wasn’t happy with the results. (The rhythms were recording in such a way to indicate that the leads weren’t quite in the right places.) But once he was happy with the read, he said it looked just fine.

Now, that’s a bit funny, and not in a “ha ha” way. A few days ago, the EKG report from that appointment released into MyChart (our patient portal) because it had been 30 days since the test. So I clicked on it just to see what it said. And it shocked me.

POTS EKG

This is not a report of a normal EKG. It identifies that I was having an arrhythmia that made them suspect that I had hypokalemia (the medical term for low potassium.) I was not on potassium at this point yet.

If your potassium is low enough that it’s causing EKG changes, that’s bad. It means my heart was beating abnormally because of the lack of potassium. That is something that can actually kill you. Not to mention my QTC was prolonged at 473 ms. That’s not too frightening, but it’s not normal by far.

This report resulted the day after my treadmill test, more than a month ago, and no one ever told me about this. I can’t do anything about it now, but it’s rubbed me the wrong way.

All I can really say is it’s a darn good thing I’m on those potassium supplements now.

The Beta Blocker

After my follow-up e-visit with my POTS doctor at the beginning of the month, he decided to put me on propranolol, a beta blocker. He said this was because my vital signs indicated that my adrenaline response at night was too high thanks to my POTS.

I started the propranolol two and a half weeks ago, and I’ve only felt worse since. I’m more tired; I can only function on 10-12 hours of sleep.

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My exercise plan has nearly ground to a halt because I feel such malaise that I can’t do anything. And honestly, the exercise is the most important part of my treatment, so I don’t think it’s good if this medication is interfering with it.

I feel like a slug. My resting heart rate is now in the mid-50s (down from the mid-60s), which I can feel and my body doesn’t like. And my vital signs really aren’t any better. I’m still orthostatic by pulse by 20-30 bpm, the numbers are just lower overall. (50s to 80s/90s on propranolol vs 60s to 90s/100s off it). It’s amazing how much worse that’s actually made me feel.

All I can really say as a whole is that I just don’t feel right. I can’t specifically point to what feels wrong, but something feels wrong. And I don’t like it. So I’ve messaged my POTS doctor to see what he thinks about stopping the propranolol because it’s certainly not helping. Surely there are other options?

The New Diagnosis?

Yeah, I know. I’m sick of these, too. It’s not a definite thing yet, though. But enough of an abnormal lab result that further investigation is warranted, in the form of a 24-hour urine collection. How fun.

Can this all just end now? I don’t want a new diagnosis. I don’t want more medications.

And there’s another thing on the back burner that I need to wait until October to check on again, but has me nervous due to a not-quite-ideal lab result.

This happened to me last year, too: a surprise diagnosis the last week of August. Really.

I’m starting to go into a protective mental shutdown, hence the lack of blogging lately.

I can’t do this anymore. No one really understands. No one gets it.

I need encouragement.

How would you feel if this were you?

💛ribbonrx

6 thoughts on “Backsliding: POTS Edition

  1. This sounds so frustrating! I know a little about how you feel. The last year has been filled with new diagnosis’s and un-diagnoses. I’ve been placed on meds with horrible side-effects and then taken off them. Then, put on them again! It takes everything out of you. I have a POTS appt in November to diagnose…..ugh

  2. I’m in the same boat right now. I’m taking all of these medications, including Propranolol, and I actually feel worse, which I didn’t realize it was possible for me to feel worse, so that’s something. Also have to redo my urine test. 😂 I feel you on the new diagnoses, but unfortunately POTS is almost never just POTS, it always has friends. Sorry for this comment to be Me-Me-Me, I just wanted you to know that you’re not alone, although it can certainly feel that way with chronic illness surrounded by healthy friends and family. <3 I'm sending good thoughts your way in the hopes that you'll feel a little relief soon!

  3. Wow, what a rough month! Big gentle hugs. I would be so frustrated and so upset and honestly just so exhausted too. You are totally entitled to your feelings. Withholding of medical info is so, so negligent. I hope September is a better month for you!

  4. I’m sorry you’re backsliding Laura! This is so frustrating, but thank you for writing and sharing your journey. Your story and blog over the course of this year has really helped me understand my own chronic illness (intractable migraines), disability from the job I love, depression, a sinus surgery, a perforated ear drum, and now as of today a potentially new diagnosis of POTS from my cardiologist. My PCP and neurologist have been dismissing my tachycardia and SOB symptoms for months as anxiety and tonight I sit here with a holter monitor reminded of your journey and blog about your holter monitor. Thank you again for writing Laura!

    1. I’m so sorry to hear all you’ve been through, Jodie! We always were very much alike when we worked together, weren’t we? Hard to believe it’s been, what, going on 4 years now?

      I’m here for you. As much as going through everything I have has sucked, and continues to suck, people like you are exactly the reason I’ve been so open about my journey. I’m glad you’ve been able to find some comfort from my blog. I understand what you’re going through and want to help you however I can.

      Love you, girl. Cross-country hugs! Can’t wait to talk to you soon! ❤️

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