The Unpredictability of POTS

The Unpredictability of POTS

I was diagnosed with postural orthostatic tachycardia syndrome (POTS) about four months ago. (Is that all? Really? *checks calendar* Blast it all. This has been the longest four months of my life.)

In a stroke of luck, my diagnosis came only a month or so after the onset of symptoms, which I inadvertently described some of here. But part of me wonders if this wasn’t the beginning, albeit still only a few weeks before things really took a more permanent turn for the worse. But since I knew what I was looking for, having heard of POTS before and being familiar with the symptoms, I went straight for the best. In another stroke of luck, the healthcare system where I receive all my care just so happens to be an autonomic center, with the most cutting edge testing available (one test I had is only performed at this center.) My cardiologist is none other than the medical director of the syncope center. So with him taking the reins, I got my diagnosis in record time.

But have I improved at all?

I’m not in as dire straits as I was prior to starting the hydration and salt the first week of January. Those help tremendously with the tachycardia and shortness of breath. The worst part of the day from that perspective tends to be right after I get out of bed for the first time and am brushing my teeth, although my heart rate doesn’t get much above the 110s anymore, where it used to easily be in the 130s.

I haven’t worn my compression socks in a week and a half. I’m doing an experiment to see if they actually make a difference at all. The jury is still out. But I put them back on this morning to see if I can notice a difference.

The thing I’m most frustrated about is exercising. I’ve only been able to get on the exercise bike a few times because it seems to almost cause more problems after the fact than it’s worth. It wipes me out for days. My pelvic pain flares up to about a 7/10. My fixed-but-still-crappy left knee starts to smart. And my messed up left Achilles’ tendon crackles and crunches in a most unpleasant manner. I could do less time (than 15 minutes), but is that effective in my rehabilitation? Does just pedaling and barely getting my heart rate above 100 have any benefit whatsoever? I’ll have to try and see. Time for more experimentation! Hmm…perhaps if I go a shorter duration of time, it won’t knock me (and my chronically pissed off pelvis, and my loose joints) out for so long? But I still need to be careful, because I sound like Rice Krispies when pedaling thanks to my permanently messed up joints from 16 years of abuse from dancing. If I wasn’t aware of my possible hypermobile Ehlers-Danlos Syndrome (hEDS) before, I am now. The amount of cracking and popping most of my joints have been doing lately (and the discomfort associated with said noises) is worrisome. I should probably locate my bag full of various braces from my dance days…

img_1916Each day, every day, revolves around the tasks I need to do to make myself feel better. At the start of each day, I have to initially spend a good deal of time in bed at first (aside from stumbling back and forth to the kitchen for fluids) propped up by my pregnancy pillow. This is because I need to take in enough hydration and salt to be able to do any physical activity of significance (meaning, anything more complex than stumbling back and forth to the kitchen) without nearly passing out. On a typical day, I drink about two liters of Gatorade G2 (per my cardiologist) and another 2-3 liters of water. I also take about 5 g of sodium in tablet form because I can’t take in the amount I need through food alone.

If it’s a good day, I can get away with three 12 ounce glasses of Gatorade and 2ish grams of sodium to get me up and moving. But on a bad day, which I need to spend most of in bed due to dizziness, it can take up to seven or eight 12 ounce glasses of Gatorade and 5 grams of sodium before I can even do something as mundane as shower. I’m certainly not bedridden by any means, but my bed is my home base. When I’m not doing the small tasks I’m capable of around the house, I spend the time sitting in bed because it gives me the ability to lay back a bit and put my feet up if I feel dizzy, especially since I have very severe venous pooling in my lower extremities (35% of my blood translocates to my legs when I sit up or stand up; in a normal person, it’s 5-10%.) But being propped up as opposed to laying flat is a good thing because it gives my body the opportunity to behave itself and pump blood like it’s supposed to. And since we propped up the head of our bed 5 degrees at the recommendation of my cardiologist, sitting on that particular surface helps train my body to pump blood more efficiently.

Sometimes I feel really well and I’m able to move around even more. I still space out my tasks during the day to allow for a greater chance that I’ll be able to accomplish them all. But things like bending over to pick something up off the floor, like a water dish for the cats, set the symptoms off just as easily no matter the day. (I know, I know- it’s a POTS rule to never bend over!) And then there are days like yesterday, when the dizziness won’t let up, even after loads of hydration and salt. I made the mistake of going out to get the mail before any hydration and I was panting and dizzy by the time I got back inside. At least a few days out of every week are like this.

img_0823It may seem like I have things down to a science. I have a very predictable routine day in and day out because I know what I have to do to make myself feel the best I can. But POTS is not predictable. Something you were able to do yesterday you might not be able to do today. Something you’ve done dozens of times before may suddenly prove exceedingly difficult or impossible one day. That’s when I run through a list in my head.

How hydrated am I?

How much salt have I had today?

Did I do any activity recently? (Sorting laundry?)

Did I do more activity than usual? (Sorting laundry AND tidying the house?)

How much sleep did I get last night? (Too much makes me feel like death warmed over.)

How much water did I drink during the night? (Anything less than a liter isn’t enough.)

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How hot is it outside? (I’ve discovered anything warmer than 75 degrees Fahrenheit is bad news.)

img_0822The problem is, the answers to those questions could all be in the good, but I could still be smacked down by symptoms. POTS is unpredictable. And POTS doesn’t care.

While there have overall been some improvements, I’m still at the mercy of POTS. I haven’t had it for long, so I’m still working with my doctors to figure out what treatment modalities are optimal for me. POTS treats everyone differently. It’s a condition that has hijacked my body and thrown a wrench into my autonomic nervous system, causing the previously well-functioning system to be filled with glitches. Unfortunately, the glitches can’t be fixed; they can only be patched up until they glitch again. Such is the life of a person with POTS.


0 thoughts on “The Unpredictability of POTS

  1. Hang in there. We may have visited before. I’m up to 10,000mg of sodium chloride a day and it has pretty well given me most of my life back. Sure I still get dizzy, hot cold. My hands are normally frigid. Tonight my feet were too, toes getting a purple hue until I rubbed my feet. Sometimes our feet get hot. Just about learning what our normal will be each day and adapting. Everytime I have an exercise day it wipes me out and I think, stronger. Stronger. Stronger.

    1. Yes, hello! ? I was awfully cold today, too. I hope I’m up to exercising again tomorrow; today was a no go by far. At least I managed a shower, so that’s an accomplishment! ?

  2. Please be careful about Gatorade. Make sure it doesn’t have the artificial sweetener aspartame (nutra-sweet, recently renamed amino sweet). People who regularly consume this get very, very sick. Aspartame is a 100% chemical product that becomes formaldehyde as it breaks down in the body. I am sorry for your suffering.

  3. Wow, for someone who has only been diagnosed for 4 months, you’re doing a great job! You seem much more aware of management of POTS (e.g. your checklist) than I was at that stage. It’s a slow road, but if it’s any consolation, 6 years post-diagnosis I am so much better than I was in the beginning. The first year, especially, was rough for me, while I figured out medication doses and activity level. I’m nowhere near where I’d like to be, but I’m so much further than where I was. I know you’ll get there, too.

    1. Thanks Lindsay! I guess disease management kind of comes naturally to me since I’m a pharmacist. Yeah, it’s definitely a challenge figuring out that balance now. I’ve been feeling better the last two weeks than I have in the past 6 months, which is awesome; it makes me happy when my heart rate only goes just above 100 when I first get out of bed and I don’t need to sit on the bathroom floor to brush my teeth! (My HR used to easily be in the 130s). But I can’t help but feel that the bottom is going to drop out at some point. But I’m still trying my hardest! Reading your blog helps encourage me! ?

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