Chronic Illness · Dysautonomia

My Struggle with POTS

(To learn who I am as a person, please visit the About Me section. For summaries of my other chronic conditions, please see the “My Chronic Illnesses” series. There are three parts: onetwothree.)

So, POTS… yeah, it pretty much sucks. This one is my newest chronic invisible illness, and has been the most debilitating by far. Postural orthostatic tachycardia syndrome is a complicated beast. POTS is a type of dysautonomia, which is a malfunction of the autonomic nervous system (the part of your nervous system that controls everything involuntary, like blinking, breathing, heart rate, blood pressure, etc). As you can imagine, the autonomic nervous system malfunctioning is not a good thing. Now, let’s explain the rest of this POTS thing the best that I can.

Postural means related to posture and orthostatic means related to an upright position. Since saying both is somewhat redundant, some people refer to POTS as PoTs, dropping “orthostatic” from the name. POTS and PoTS are the same condition. Tachycardia is an “abnormally rapid heart rate.” Lastly, syndromes are “a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.” While there are dozens of symptoms that can present in patients with POTS, the only diagnostic criteria is a sudden and dramatic increase in heart rate when the patient goes from horizontal to vertical (flat on back to standing). In a healthy person, there is no increase in heart rate when they stand up. POTS patients, on the other hand, have dramatic increases in heart rate (30+ beats per minute increase), which can cause a bunch of other symptoms.

Most POTS patients also have orthostatic hypotension, which means that their blood pressure also becomes abnormally low upon standing. From everything I have found, this tends to be the most common presentation. Another commonality seems to be fainting. When the body realizes the tachycardia and blood pressure changes, it tries to “reboot” the system, dropping the heart rate suddenly and the blood pressure even further… and the sudden reduction in blood flow to the brain causes the person to faint. While these seem to be the most common presentations of the illness by far, my body doesn’t like to do things the “common” or “normal” way… so of course that is not what my body does.

Heartrate

My heart rate has always been really high, with my resting heart rate being around 80 for as long as I can remember (I always thought it was because of my asthma not letting me oxygenate my blood properly, making my heart work faster to get more blood to areas that needed oxygen). In about October 2014 though, things started to get weird. For as long as I have been having my blood pressure taken (as an adult) it has been almost exactly 120/80 (which is considered normal)… however, during one of my yearly checkups (10/2014), my blood pressure was randomly 130ish over 90ish… NOT GOOD! Shortly after that, things started to go haywire, and quickly. I was getting extremely dizzy and light headed. My head would start spinning pretty badly anytime I wasn’t lying down, and I kept losing my balance. My limbs would start to swell and get painful anytime I wasn’t lying down as well, even if I wasn’t doing anything out of the ordinary at all. My temperature sensitivity seemed to be getting much worse, my blood pressure got way out of control and was all over the place (at one point it was 156/110, I kind of felt like I was dying), and I was having difficulty breathing that I couldn’t use my asthma to explain. Before I lost almost all ability to walk on my own, I had a checkup with my rheumatologist. He asked if I had digestive problems and a few other things, then suggested I look into POTS and start taking my blood pressure regularly. I don’t think my PCP (primary care physician) knew what it was, but I was able to explain it well enough (I research things that my doctors mention, pretty much to death) that she sent me for testing. Unfortunately, she sent me to a place that didn’t do the one test that could actually diagnose me, a tilt table test. By the way, tilt table tests suck, even if you are healthy apparently (the nurse said she did one, either in school or out of curiosity, I can’t remember). You are strapped securely to a table while lying on your back with your feet against a large plate (that you will eventually be standing on). Once strapped down, they get baseline readings for your heart rate and blood pressure, then they raise you up to a 70 degree angle (though it feels as though you are tipped forward instead of slightly backwards) and keep you there for 40 minutes or until you pass out (whichever comes first) while reading your heart rate and blood pressure the entire time (and blood oxygen level). As you can imagine, if you have issues being upright, this is about the worst thing ever. If the test shows the correct increase in heart rate (after being interpreted by a cardiologist), and pretty much everything else that could be causing your symptoms has been ruled out, you are diagnosed with POTS and get shipped off to a cardiologist. Why a heart doc? Well, even though POTS is actually a nervous system issue, it presents like a heart condition (and is, for all intents and purposes anyway), so you see a heart doctor (cardiologist).

On my first visit to the cardio, I discovered that I did not have the “common” form of POTS. My blood pressure goes up with my heart rate when I stand (sometimes it’s actually below normal when I’m lying down), and my body never tries to overcompensate, so I never faint. Unfortunately, this is extremely unusual, so we’re having to completely experiment with my treatments. In hypotension cases, the hypotension is usually caused by hypovolemia (low blood volume). To increase the volume of blood, and alleviate some of their symptoms, many POTS patients are told to dramatically increase their fluid intake (and usually their salt intake as well to make sure the water gets properly distributed in the body). Even though I don’t have hypotension, I asked my cardio about hydration. He said it was a good idea to stay hydrated, and that not drinking straight water would be best, but that I don’t specifically need to try to increase my salt intake. I decided to see, over the course of a few days, if I could drink enough fluid to alleviate symptoms. I researched online, and everything I was finding for treating POTS with hydration therapy was to drink until your urine was clear. Sounds simple, right? WRONG! Oh my goodness… so much fluid required. For the average person to achieve and sustain hydration, they need to consume eight cups of fluid a day (which is half a gallon). I couldn’t feel any symptom reduction until I had reached 3/4 of a gallon (12 cups) and my urine wasn’t clear until I was drinking almost an entire gallon… Now, luckily, I can get some symptom reduction with about 16-24 ounces of Propel Water, a bottle of SoBe Lifewater, and enough extra fluids to equal at least half a gallon. Unfortunately, that isn’t always possible (sustaining that level of fluid intake tends to make me feel ill or life distracts me), and if I get dehydrated then my symptoms get worse.

POTS Stick Figure

So what, aside from heart rate and blood pressure, are my POTS symptoms? I have: dizziness, equilibrium issues, balance problems, exhaustion and fatigue, occasional pounding heart beat (it feels as though my heart is trying to escape), swelling in my lower legs and feet, swelling in my fingers/hands, feet turning a blackish purple, slight numbing of the feelings in my lower legs, difficulty breathing, pain in my joints, inability to bend over and stand back up quickly, dehydration (chapped and splitting lips, dry and flaky skin on my fingers and toes, dark yellow urine, etc), sudden loss of strength in muscles, chest pain, cramping of muscles on and around my chest, exercise intolerance, extreme sensitivity to heat, and several others that don’t actually seem like they’d be part of a heart condition (like brain fog, digestive issues, shaking for apparently no reason, temperature regulation issues including excessive sweat, feeling full faster than before, and inability to force my eyes to focus on occasion). You’ll notice that several of these are the same things I listed for fibro. The only reason I know they’re part of my POTS and not just spillover from fibro is because they went away or became significantly less severe before the POTS started. As I said, not fun.

Before my diagnosis with POTS, but after all the symptoms got out of control, I couldn’t even walk the 15-20 feet from the couch to the fridge (for more water) or to the restroom. Heck, some days I couldn’t even stay sitting upright for more than an hour at a time. Luckily, Dan was there for me. He’d put a bunch of stuff on the coffee table before leaving for work so that I wouldn’t need to get up as often, and he’d help me walk to and from the restroom (as well as fetch everything for me) when he was home. When we had to run errands, I needed to use wheelchairs. Luckily I was able to find a diagnosis relatively quickly (some people have to wait for years before finally getting answers) so I was able to start treatments. I am currently on a very low dose of a beta blocker and a low dose of a medication used to treat hypertension, and I can function pretty well most days.

Pots Pain

**Please check out my Invisible Illnesses board on Pinterest for even more information (and some chuckles) about my conditions.

**Also, take a look at this article. It contains information from the largest POTS patient survey ever, with over 900 respondents! The survey results are accompanied by expert information as well. It’s a great intro resource!

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