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.  :-)

Diagnosis: Gastroparesis

I was diagnosed with two forms of Dysautonomia this summer, Gastroparesis and Postural Orthostatic Tachycardia Syndrome (PoTS).  While I was very lucky to receive both diagnoses as quickly as I did, there are so many people who wait years for answers or who go misdiagnosed.

In a nutshell, Dysautonomia is an umbrella term that covers a variety of malfunctions of the autonomic nervous system (all the functions of your body that you don't consciously control).  These functions include breathing, heart rate, body temperature, digestion, and a whole host of other body functions that a person without dysautonomia doesn't have to consciously think about.  Symptoms vary in intensity and from person to person, but every single person with Dysautonomia is affected in a multitude of ways.  

The first form of Dysautonomia that I was diagnosed with is Gastroparesis (GP), paralysis of the stomach that causes food to either not digest properly or to take days or weeks to digest. Symptoms of GP include (but are not limited to) nausea, early satiety (feeling full after only a few bites of food), bloating, acid reflux, and abdominal pain. This is considered a rare disease and it's pure luck that I was diagnosed as quickly and as easily as I was.  

 

My family went on vacation in July like we always do.  I noticed that I wasn't very hungry all week (insanely unusual for me) and had had bouts of stomach discomfort in the weeks leading up to our vacation.   I ate a slice of pizza for dinner one night and ended up with a stomach ache later on, but I chalked it up to gastritis, which had shown up on an endoscopy I'd had a few weeks prior.  I still didn't have much of an appetite throughout the week and had mild stomach discomfort more often than not. 

 The day we got home from vacation, we had Chic-fil-A for dinner.  I wasn't very hungry, so only had a few bites of my sandwich and some fries.  A few hours later, I was in debilitating pain.  My stomach felt like it was twisting itself inside out and I had a deep, gnawing pain in the center of my belly, just below the breastbone.  I drove myself to the ER where they did bloodwork, gave me a "GI cocktail" and sent me on my way.  My stomach didn't feel right that whole day, but the worst of the pain was gone.  Fast forward to dinner that night.  Again, I wasn't hungry and wasn't feeling great, so I had {literally} 3 bites of roast beef and 1 cooked carrot before I started feeling nauseous and stopped.  That was all I'd eaten the entire day.  Four hours later I was in the ER again, this time with my mom for company.  I couldn't stand up straight because of the pain and nothing I did made it any better.  They gave me Dilaudid and Zofran for pain and nausea, did more bloodwork, and sent me for both a CT and an ultrasound of my abdomen.  Two hours later, the ER doc came in to let me know that my bloodwork, the CT, and the ultrasound all looked great.  "The only thing we saw on your ultrasound," the doctor said, "was a moderate amount of food in your stomach." I commented that it was strange that there was any food in my stomach, let alone a "moderate amount", because in the last 26 hours I had only eaten 3 bites of roast beef and a carrot, and that had been about 13 hours earlier.  The doctor kind of shrugged it off and told me to mention it to my GI doctor and ask if she wanted to do a stomach emptying test. Had that doctor not mentioned only seeing food in my stomach and had I not said anything about it being odd, I'd still be wondering what the hell was wrong with me.  As luck would have it, that quick comment would lead the a definitive diagnosis. 

I had an appointment two weeks later with my GI doctor.  At this point, I had very little appetite and was in pain every day, to the point where I was on a strictly liquid diet because it was the only thing that didn't send me to the ER. I'd lost 15lbs in 18 days. In the days leading up to my GI appointment, I was desperate for answers and relief and didn't think any of the ER doctors really took me seriously (one doctor, after my 3rd ER visit in 3 days, thought I was there for drugs but that's a story for another time). I sat at my kitchen table and I wrote down every single symptom I'd ever had in my life {seriously, every single one}.  I pored over every test in my patient portal and wrote down anything that looked suspicious or out of the norm.  I went to that GI appointment with 6 pages worth of symptoms, test results, and concerns, and I just dropped it all on her like a bomb.  

My doctor's first thought was to do a gallbladder function test to see if I was having silent gall bladder attacks. I was on board, but mentioned the interaction in the ER and that that doctor told me to mention it and see about an emptying study.  She switched up her original plan and scheduled me for a gastric emptying study the following week.  As I was leaving her office, she looked down at the pages I'd given her and offhandedly said "A lot of the symptoms you have here sound like PoTS.  You might want to follow up with your cardiologist to rule that out."

A week later I showed up for my gastric emptying study, ate the radioactive eggs and toast they gave me, and went on my merry way.  Two days later I got a call from my GI office confirming moderate Gastroparesis.  She started me on medication right away and gave me handouts on how to manage the condition.  There is no cure for Gastroparesis, but diet modification and eating smaller, more frequent meals along with the medication have helped my symptoms so much.  I still don't know what foods will trigger any symptoms, but I stick to my list of safe foods that I know my stomach can handle (hello, carbs!) and my GP has been pretty well managed for now.

Here's hoping it stays that way!

It's Dysautonomia Awareness Month

Ignoring the fact that I haven't updated here in quite some time...

I was recently diagnosed with a chronic illness.  Two of them, actually.  And, surprisingly, I hadn't heard of either of them before my own diagnosis.  And since October is Dysautonomia Awareness Month, I thought it might be a good idea to put some info out there for other people who, like me, might not have known what any of this was.  

So.  First things first.  Dysautonomia is kind of a blanket term for a group of disorders that are caused by problems with the autonomic nervous system (ANS).  This part of the nervous system controls the things that you don't normally have to think about, like your heartbeat, breathing, digestion, temperature regulation, etc.  When someone has dysautonomia the autonomic nervous system doesn't work like it should, which causes heart and blood pressure problems, breathing trouble, digestion issues, etc.  The two forms of dysautonomia that I was diagnosed with are Gastroparesis and Postural Orthostatic Tachycardia Syndrome (POTS).  

PoTS is the most common form of dysautonomia, where Gastroparesis is considered a rare disease.  Neither of them are much fun, but PoTS impacts my life far more than the gastroparesis does.  I'll go into detail on both disorders in another post (or two), but for now here's your warning...more dysautonomia awareness is coming!