Yesterday, I noticed my heart rate was pretty touchy in response to posture changes compared to normal. In fact, my resting tachycardia had been getting progressively worse over the previous few days, and it seemed my heart was now stepping up its game by increasing my upright tachycardia as well. I had been requiring an extra half dose of my beta blocker between normal doses because the normal doses weren’t cutting it. The only other symptom that got worse was fatigue, but fatigue is nothing new or unusual with me. This morning prior to any meds, I took my three deep breathes supine, three deep breaths sitting up, three deep breaths with my feet over the edge, then stood up out of bed, prepared to take my final 3 deep breaths prior to walking, and immediately had to sit down because my heart rate increased so rapidly. Typically I wait 20 minutes after taking Propanolol (beta blocker) and Midodrine (increases blood pressure) to get out of bed, but I didn’t want to pee my pants!
After this, I made an executive decision to take 15mg of Propanolol as my first dose rather than taking 10 mg only to not have it work and need 5mg 2 hours later. Historically, (for the last 10 months up until this week) 10mg of Propanolol brings my resting, supine heart rate down to the high 50s/low 60s. Today, after 15mg of Propanolol and plenty of fluids, my resting, supine heart rate is 91 and within 15 seconds of standing, my heart rate is in the 120s and I need to sit down. My blood pressure is okay (100/85), although my pulse pressure is low.
I was so confused by the increase in both resting and standing tachycardia with no other symptoms. I’m not lightheaded, nauseous, experiencing vision white outs, and my brain fog isn’t as bad as it could be. This has never happened on its own without some other major symptom. I’d been sleeping 11-12 hours per night instead of my normal 9 hours, but I had assumed it was because my body is recovering from my big day this past Sunday. I had worsened fatigue, but like I said, that symptom comes and goes as it pleases and, while annoying, does not alarm me. I had a headache and weird sensations in my head, but that was just one night and I used to get them daily. I’d had a few low grade fevers, but again, that is quite normal for me. In fact, only a few fevers over 2 weeks is excellent for me. No matter how much I thought about it, nothing was raising red flags symptom-wise other than the tachycardia. I was grateful I wasn’t having tons of symptoms like I used to when my tachycardia worsened, but also so very confused. Therefore, I came to the conclusion is was not a result of my dysautonomia (POTS falls under the umbrella of dysautonomia) flaring up since I wasn’t having any other dysautonomia issues. Was I becoming tolerant of my beta blocker? Was something new going on in my body? I do believe my body is attempting to compensate for something with the tachycardia and we just don’t know what. Had my body found a way to bypass the beta blocker to achieve its goal of having tachycardia? What the heck, please no!
As I always do when I am flustered, I called my Mom. We came to the conclusion I am likely having a POTS flare, but it is different than what I am used to because of my latest treatment. I started an antihistamine (Clariten) 2 weeks ago, but initially it actually lowered my heart rate. Decongestants are notorious for causing tachycardia, but antihistamines tend to be the opposite. I didn’t think Clariten was our answer because I’d done wonderful on it for a full week. When we reflected on it, in the past 9 days I had done party prep, threw Emma’s birthday party then, three days later, did the Easy Bake oven standing most of the time because Emma needed the stool to reach the counter (Jake you are right — we should do it on the floor). We had some company that day which was really fun and the next day, went to a 2.5 hour long movie (which I did great at and didn’t have to leave once thanks to my ear plugs), and then the next day (yesterday), I went on an hour long grocery trip using the scooter, carried groceries inside and put them all away. That is A LOT! Without nausea, vomiting, insomnia, daily fevers, vision problems, noise sensitivity (most of the time), and all of that.. I had no idea my body was getting stressed out. The warning sign was there in the form of my slowly increasing tachycardia issues, but I wasn’t getting the message. I mean, really? One symptom worsening? Pssh! I don’t know any POTSie who would take one symptom worsening too seriously with the way our bodies act. However, it got worse and worse over the past few days until it had my undivided attention. The symptom it chose as a signal makes me feel as though my body is forcing me to rest by making standing, or even moving my arms around while laying, so uncomfortable! I know I’m personifying my body, but it is the easiest way for me to think of it.
So, if I am right, and this is a POTS flare, then I need to remember, thanks to my success with biofeedback, the signs of impending POTS doom will be different than the signs I have become accustomed to looking for. What I used to rely on to know I needed to take a few days off or I’d have a mess on my hands, no longer occurs. This is awesome; trust me, I don’t miss the nausea! However, it is only awesome if I can recognize this change and know the new signs, such as my tachycardia slowly worsening.
I also realized just this second, my twitching has been worse. I don’t constantly twitch by any means, but sometimes when I am holding on to something, I twitch and drop whatever it is I am holding. It tends to happen at the end of a tiring day. Unusually, this has happened a few times a day most days this week. Hmm…. Maybe that is another sign I can be on the look out for now that my old signs are gone? Oh crud! I just remembered I also had excruciating upper, central abdominal pain for 3.5 hours on Tuesday night along with intermittent (what I call) “kidney pain”. I’ve had the severe “kidney pain” every now and then ever since I had scarlet fever and a nasty kidney infection at the age of 9, but my kidneys check out fine so I just deal with it. The abdominal pain was constant, stabbing and unlike any abdominal pain I’ve had before, but it was quite high, so I wasn’t concerned it was my appendix. Position, pressure, food, water, heat, cold… nothing effected it positively or negatively. I agreed I’d visit the hospital if it didn’t go away within 5 hours (by 2AM). If a symptom just comes once, I don’t count it so I’d actually forgotten about this! “You know you’re chronically ill when….” Sooo, maybe there were a few more signs than I am giving my body credit for, but it blindsided me with new signs rather than the old ones so I take no responsibility! This sidetrack has actually provided even more evidence for my lesson which is:
After experiencing success in eliminating some symptoms with a new treatment plan, the signs of impending POTS doom will likely be different than those you had become accustomed to prior to the new treatment.
My plan is to treat this as a POTS flare by resting today and tomorrow, and if the tachycardia doesn’t improve, I will go see my doctor about my beta blocker dosage.