Living with POTS

What is POTS like for me?

POTS (Postural Orthostatic Tachycardia Syndrome) may present a little differently in each person.  There are certainly different degrees of severity.  Some POTS patients may simply have uncomfortable tachycardia, occasional light-headedness, and brain fog, while others (like myself) become bedridden and disabled. (About 25% of POTS patients are disabled).

I can only speak from my own experience, but I wanted to describe what POTS is like for me.  I have two basic states of being.  I'll call them POTS NORM and ACUTE POTS EPISODES.

POTS NORM (Everyday Symptoms)

I love when people reach out or check in on me-- especially because I don't get out much.  That being said, one of the hardest questions to answer is "How are you doing?"  Not only does it change by hour, but my baseline scale of pain and general exhaustion starts at a 4-5 most days.  So even if I am doing "great," it means I'm still at a level 4 on the general cruddiness scale. 

My biggest everyday symptom is probably fatigue.  I just feel so tired ALL THE TIME (for any moms out there, think first-trimester-of-pregnancy-tired).  I can do something as simple as getting up to brush my teeth and feel completely wiped out just from that (taking a shower feels like running a race!).  When I am upright my symptoms all increase.  I feel that frantic fluttery feeling of my heart beating fast, vertigo, and brain fog.  My blood pools and my feet turn all sorts of interesting colors (white, red, purple, black-- sometimes each toe a different color).  The longer I'm up, the worse my symptoms get. 

I experience varying levels of chronic pain. I have hypermobility (weak connective tissue), so I frequently have subluxations of my SI joint, ribs, or shoulder, as well as plantar fasciitis.  My back and neck always hurt (coat hanger pain), along with most everywhere else.  I've had a constant headache (for probably ten years or more), but it regularly turns to more intense migraines 2 to 5 times a week.  I also have a lot of digestion problems and poor gut motility, so I frequently feel sick to my stomach as well.   

The decreased oxygen to my brain provides all sorts of exciting symptoms.  Although fainting is common for some POTS patients, I don't technically faint.  I do, however, experience a lot of pre-syncope (feeling like I'm about to pass out).  The world grays out and I become extra sensitive to external stimuli.  Sounds become loud and grating to my ears.  Light becomes intense and intrusive.  My eyes don't always dilate properly, which makes me more photo-sensitive.  I get agitated quickly from too much sensory input.  And just as pain medications, anesthesia, or alcohol can numb your brain or cause that slow-motion feeling, I have similar sensations.  It takes longer for my brain to process things and respond.  My motor coordination becomes clumsy and I sometimes lose my verbal filters.  Similar to someone intoxicated, I sometimes get overwhelmed with intense emotions like sadness, embarrassment, anger, or fear for no apparent reason (most often its sadness and tears, but occasionally I am racked with fits of irrational laughter). 

ACUTE POTS EPISODES

When I hit overload is when I have what I call a POTS EPISODE where my body pretty much shuts down.  I collapse and an even more extreme sense of fatigue and lethargy takes over.  I don't fully lose consciousness, but I do go into a cataplectic, altered state of consciousness where I often can't move or talk.  I feel as if I have lead running through my veins or perhaps my limbs are being encased with cement.  I can still hear, although it feels dream-like, since my brain is slow to process.  Even though I'm laying down at this point, all I can think about is how insanely tired I am, yet at the same time, the adrenaline running through me makes my muscles twitch and starts my mind whirring.  My thoughts start to loop-- like those annoying cyclical dreams that repeat over and over again. I can get a pretty intense headache or migraine about this point and start to see fireworks and bright lights going off in waves behind my eyelids.  I have heart palpitations and my chest, shoulder, back, and neck pain increase.  I feel vertigo and nausea and it feels like I can't catch my breath. Some episodes have been so intense that I feared I was having a heart attack or stroke.  They can be really scary, but I've experienced it so many times (hundreds!) by now to know that I'm not dying, so I try to stay calm and ride it out as best I can.

(This is an actual heart rate reading of mine- while laying on the couch)

The excess adrenaline feels like painful electricity running up and down my nerves-- nails on a chalkboard is the best way I can describe it.  It also causes intense flushing, so I feel like I've been suddenly thrown into a furnace.  Although my body doesn't sweat like it should to help cool me down, so I easily overheat.  My skin will be hot to the touch as if it's been badly sunburned.  

The adrenaline also makes my muscles twitchy.  I feel like I need to get up and run (fight or flight),  yet I'm pinned down at the same time (i.e. stepping on the gas and brakes simultaneously).  I can feel electric pulses running up and down my nerves. My muscles will start to spontaneously contract, causing tremors.  Most often I get what's called myoclonic jerks-that sensation when you are about to fall asleep or that dream where you feel like you are falling and then your body suddenly jerks awake.  In my case they are large, sometimes violent, convulsions that happen repeatedly (non-epileptic seizures).  Just like you can't control the hiccups, I can't control the convulsions, and the intensity and repetition of the muscle contractions can become quite painful.

These episodes can last anywhere from 20 minutes to two hours.  They hit most often when I have been upright for too long, get overwhelmed (sensory overload), or at night after I have overdone it during the day (barometric pressure/storms also really affect me)-- and it's not uncommon for me to have repeated episodes throughout an entire night.  They leave me drained and groggy for some time after, and once I've had an episode, the adrenaline can keep me from sleeping for hours-- even though that's all I desperately want to do.  

My first acute POTS episode happened after collapsing at Disneyland in October of 2015.  I had to be wheeled out by the paramedics (who thought I was drunk or drugged, as did the ER until my tox screen came back clear).  After that first day, I would often have these episodes 2-8 times a day.  Two years later they are, fortunately, less frequent (2-8x a week).  However, I also spend much more time laying down and try to avoid situations where my brain gets overwhelmed (which doesn't take much).  Sadly, it is these acute attacks that keep me from leaving the house often.  I don’t dare drive.  When I do leave the house, I have to be accompanied by another adult, and I usually go out in a wheelchair because I never know when I walk into someplace if I will be able to walk out again.  Even going into a store or restaurant is difficult because of the fluorescent lights and the background music, noise, and movement that is hard to filter.  It sure makes it difficult to live life to the fullest when you are nervous to even leave your house.  (Yes, I have ended up convulsing on the ground in public on more than on occasion).

Perspective is Everything

I'd like to note that I feel pretty vulnerable writing such personal blog posts and sharing this information with the world.  I don't post this in order to gain sympathy, but because I feel strongly about raising awareness and helping others understand what living with POTS is like.  Additionally, I want to add that, even though POTS itself is pretty horrible, my life is not horrible.  I definitely have down days, sad moments, and a lot of frustration.  I've had to give up a lot of things I care about and, I'm not going to lie, it is really hard sometimes.  But I also have learned to focus on the things that matter most in life-- my husband, kids, family, friends, and faith.  I have adapted where possible and discovered new talents,  hobbies, and ways to serve others so I can continue to feel productive and fulfilled.  I have gained a greater appreciation for the people and blessings in my life.  And I have realized that I can still be happy despite my circumstances.

UPDATE: I first wrote this in page in 2017 (though I'd been dealing with these intense symptoms since 2015).  In fall of 2018, we finally figured out that I had multiple CSF leaks.  Even though I knew that CSF leaks could be a common problem with POTS and hEDS (hypermobility), I had initially had a brain MRI and a spinal tap in 2015 with no apparent issue, so I didn't think this was something I needed to look into further.  After repeatedly telling my doctor that my migraines were out of control and worse when I was upright or tried to exercise, he sent me for a series of brain, cervical, and thoracic MRI's that ended up showing signs of multiple CSF leaks and a sagging brain stem.  I had a blood/spinal patch done, which threw me into painful rebound high CSF pressure for about 2 months, but during that time, I only had one of the above mentioned acute episodses.  As my CSF pressure started to regulate I had a couple of days where I felt absolutely fantastic.  Unfortunately, it didn't last long and I had to go back in for a repeat spinal patch.  Again, after the 2nd patch I had some painful rebound pressure, but I could tell that a lot of my other symptoms had improved-- I was able to be up longer without the frantic feelings, my sensory processing had improved, and I didn't have any acute tremor episodes for almost 2 months-- this tells me that I am at least on the right track.  As of now (June 2019), a lot of those symptoms are returning.  I may need another patch coming up.  My doctor also suspects there may be some cranial instability issues.  I don't know what's in store next, but I wanted to post an update here for anyone that is having similar issues and might need another avenue to look. 

Want to know more?

Read What is POTS?

Learn more about the Physiology of POTS