It's helped me so much to have a diagnosis of a condition that has haunted me since my 2009 hysterectomy. My health has plummeted out of control since then and doctor after doctor, test after test, couldn't explain why until recently. Mayo Clinic explains that POTS is a extremely rare condition, only 500,000 cases diagnosed in the US, which occurs when the autonomic nervous system (the involuntary or automatic part) doesn't work as it should. The autonomic nervous system, made up of the sympathetic division (the accelerator) and the parasympathetic division (the brakes) controls most of the vital body functions like heart rate, blood pressure, digestion, bowel and bladder function and POTS is a collection of chronic symptoms that occur from this malfunction. Symptoms often include tachycardia (rapid heart rate), chest pain, light-headedness, brain fog, skin rashes, dizziness, fainting, tingling/electrical sensations, shortness of breath, vision changes, vision loss, excercise intolerance, fatigue, headache, migraine, nausea, bowel irritability, bloating, sleep problems, heat/cold intolerance, excessive sweating, clamminess. I have had all of those, except for vision loss. It affects mostly young females and is thought to be caused by chemical imbalances in the nerves controlling blood flow. Viral infections, trauma, surgery, pregnancy, are all possible triggers. In about half the cases, the cause is unknown. Treatment is individualized because every POTS patient is different, and is focused on symptom management. There is no cure but roughly 50% of POTS patients recover to a good functioning state. Many exhibit a relapse/remit format for the condition. It is often disabling and extremely challenging.
So that's the clinical explanation. Here's what it's really like to live with POTS:
Every day is uncertain. You wake up to a disproportionate rush of adrenaline. Your heart starts racing but you think it might be an ok day (not great) because you can actually move rather than feeling locked to your bed. You think maybe you can get some long overdo chores done so you get up and then your heart races, increasing 30bpm or more, turning your upright position into an instant sprinting condition, according to your heart function. It's ok, happens all the time, just get dressed maybe take a shower and see how you feel then. You have to watch the temperature in the shower as heat exacerbates your condition. A simple shower feels like a 5k race. Get out and the blood is starting to pool in your abdomen (and/or legs) and likely starting to change color from it. Your brain is screaming for your body to pull the blood back up to it, so your heart pumps faster trying to accomodate. Your face is flushing, you start sweating profusely and you probably haven't even dressed yet. Maybe your spouse, your parent, your child sees you in this distress and they start to fear for your safety. It's ok, it happens all the time. It won't kill you. You start thinking maybe that trip to the grocery store won't happen, maybe that load of laundry will have to wait because an overwhelming need to lay down (not necessarily just sit) overcomes you. Why? Because if you don't you know you will eventually start shaking uncontrollably, the electrical pulsations will storm, you'll have disrupted vision, be unable to focus, have difficulty speaking, your bowels or bladder will cease up or just release and eventually you will faint. Maybe you push through it anyway, gut your way to accomplish something in your day, while your mind constantly evaluates and negotiates with your body. Maybe you actually accomplish what you spent months or days contemplating and talking yourself into doing because it is simply that challenging to work with an out of control body. If you do, you pay for it. You are sick and bed ridden for days, sometimes weeks afterwards. Then you start again from scratch. Building yourself back up hour by hour to accomplish another task in the future, maybe a few hours from now, maybe a few days from now, maybe a few months. It is a slow condition to work with. You don't just bounce back. You work and gut and claw your way back to normal, never quite reaching it.
Maybe tomorrow will be better. Maybe it will be worse. And in the meantime, you put a smile on your face and you pretend like you are ok enough and fight to hold on to the person you are deep inside while simultaneously mourning the loss of what you used to be able to do with ease. A constant battle inside a broken body. And that's how my life went to POTS.
