Diagnosis: PoTS

In my last post I talked about how I was diagnosed with Gastroparesis.  My POTS diagnosis was just as quick and (also) pure dumb luck.  

Postural Orthostatic Tachycardia Syndrome (POTS) is a very common form of Dysautonomia that is characterized by a heart rate increase of 30 bpm (40 bpm in children and adolescents) or more within the first ten minutes of standing.  When a person without POTS stands up, gravity pulls about 2 quarts of blood into the lower body (an adult has about 6 quarts).  The brain senses a sudden loss of blood and triggers this response: (1) the heart beats faster, (2) the heart beats with greater force, which increases blood pressure, and (3) vessels in the lower half of the body constrict, which forces more blood back into the upper body, usually within two heartbeats and without you even realizing anything is happening. When a person with POTS stands up, the brain triggers this response: (1) the heart beats faster, (2) blood pressure increases for some and drops for others BUT the lower-body vessels don't constrict, so blood isn't properly redistributed throughout the body.  The brain, which still senses a loss of blood, maintains the rapid heartbeats and abnormal blood pressure.  The brain and the heart aren't communicating properly and this, in turn, causes the autonomic nervous system to go haywire.  

The diagnostic criteria focuses on increased heart rate upon standing, but that's just the tip of the iceberg when it comes to POTS symptoms.  Like with Gastroparesis, these symptoms can vary from person to person and from day to day in terms of severity.  

Like I said, getting my diagnosis was pure luck.  I'd gone to a GI appointment with a list of symptoms I'd been experiencing (some of them for years) and on my way out the door the doctor commented that a lot of my symptoms sound like POTS and I should check in with my cardiologist.  I'd never heard of POTS, but seeing a cardiologist was nothing new to me because I've had Supraventricular Tachycardia (SVT) since I was a kid. I went home that day, googled POTS, and realized that I'd been experiencing it for years  I didn't know that that's what it was and, before desperately listing any symptom I'd ever had to help with a Gastroparesis diagnosis, I didn't tell anyone about my "episodes" because I just attributed the rapid heart rate to my SVT and the other symptoms to being overweight and/or out of shape and there was no way I was going to admit that to a doctor. 

It took me a few days to find a cardiologist that would see me regarding a POTS diagnosis.  A lot of the cardiologists in my area don't specialize in the syndrome because there is so much more to it than just the rapid heart rate, and I kept being referred to other providers. I finally found one who had expertise in it, and saw him a few weeks later.   

Symptoms vary from person to person (and day to day), but on a typical day this is what I experience (in this order) any time I stand up: 

      -- dizziness

      -- tunnel vision or darkening vision

      -- shortness of breath

      -- heaviness in my chest and limbs

      -- shakiness/tremors

      -- tachycardia

{None of this is noticeable to anyone but me unless I get dizzy enough that I need to lean on something, and I will die before I admit to anyone that anything out of the ordinary is happening}

The tachycardia aspect of POTS isn't the symptom that bothers me the most, but it's the one that stands out the most on paper.  Once my heart rate hits the 130s I start to feel pretty awful, and that's my cue to sit the hell down and chill out. The graphs below are screen shots from my cardiac tracking app, and are a pretty accurate picture of a normal day for me.

   

These "stats" were all taken over a 12 hour period on 3 separate days, but it looks like this pretty much every day.  The orange color indicates an elevated heart rate, which is anything over 120bpm.  The red color indicates a high heart rate, which is anything over 150bpm.  Blue is normal, a heart rate of 60-100bpm.  I spend just about half the day with an elevated heart rate and the other half with a high heart rate.  I very rarely have days where my heart rate is in the normal range.  I don't exercise.  Like, at all.  These numbers are just me resting or standing/walking to another room.  

I'm lucky that I can work from home, so I'm able to sit back down pretty quickly to get my symptoms under control. If I'm not able to sit down (like when a parent is picking up) I lean on furniture until my symptoms get themselves under control. Because my heart rate increases so much and so quickly during the day my body thinks I'm constantly exercising.  I'm always tired and slightly achy, and more often than not, I'm nauseous for a good portion of the day.  Taking a shower is the equivalent of running a marathon and I have to sit in bed and rest for a few minutes after before I can get up and get dressed.  If I'm also doing anything with my hair other than throwing it up I have to take breaks throughout the styling process. I've found recently that if I exert myself or am more active that normal, I pay for it the following day or two.  I was in a wedding in early September and we had a long day getting ready and then celebrating.  Nothing too crazy, I wasn't running around all over the place, but I was on my feet most of the day.  The next morning, as soon as I woke up my entire body ached, I had a headache, and the fatigue was so intense I ended up sleeping for most of the day.

Right now, there is no cure for POTS, but there are ways to make it a bit more manageable.  A good part of that is recognizing that your body just doesn't work like a "normal" person's and figuring out a way to be okay with that.  But there are some medications that can help; I just started a beta blocker (literally, just started it this morning because I don't like beta blockers and I've been putting it off).  Drinking a ton of water and increasing your sodium intake are both good for keeping things more manageable. I bought a half gallon water bottle on amazon and I refill it throughout the day; I'm drinking more water now than I have in the entire 38 years I've been on this planet combined. I discovered Liquid IV and I use that in my water like it's going out of style.  It's an electrolyte mix that has added sodium--I get an extra sodium boost and it flavors my water so it's not always boring.  And when all else fails I eat straight table salt, shaker to mouth.  It's gross and I don't recommend it but sometimes ya gotta do what ya gotta do.  

I'm still learning what works best for me, and it's pretty much trial and error on any given day.  I'm lucky that I'm still able to work and live a fairly normal life--25% of POTS patients are so disabled they're unable to go to work or school, so I count my blessings there.  And humor.  Humor helps.  :-)