First thing in the morning, your body is clammy...half from that morning hot flash, and half from the sun radiating through your blinds. The constant fatigue contributes to the inability to keep your head up and the pounding headache is to be expected. You try to sit up, and it feels as if your room is spinning a mile minute. Eventually you rally up enough courage to stand up, although, within seconds you see black with some stars, sweat profusely, legs shaking, have a pit in your stomach, the urge to throw up, and fall to the ground. Lovely start to your morning, I know. You wake up when you hit the floor, not the littlest bit phased as to what just happened. Why? Because you live every second, minute, hour, day, of your life in a similar fashion.
You aren't completely sure what is wrong with you and no doctor has an explanation for your symptoms. You get thrown between doctors as if they're playing hot potato, none of them wanting to deal with a situation that falls short of an easy fix. You feel helpless and spend endless days in that spot of your bed that seems to fit the curves of your body perfectly- a safe and comforting place to say the least. The day comes when you can no longer get out of bed and the desperation to find help has never been so strong. You go to a new doctor, whom seems like your last hope, or else you may give up, give up because living everyday of your life like this is pure hell and not something that anyone ever deserves to go through. The doctor brings up something called a "tilt table test" or tells you to lay down as he/she takes your heart rate, later telling you to stand. Your baffled and caught off guard as to why this is all necessary. The doctor proceeds to tell you that you are suffering from Postural Orthostatic Tachycardia Syndrome, otherwise known as POTS.
A part of you is happy to have answers and the rest of you isn't quite sure what to think of everything right now. Your curiosity builds and you begin asking questions like, "What is wrong with me?", "Can you help me?", "Will this last forever?" It seems as if your head may explode from the endless thoughts (that, may I say are most certainly not helping the constant migraine). Now is when the anger and frustration kick in. You just want to feel okay again and you wish treatment was as simple as taking a pill and having all your problems go away. You wish there was a cure and you wish for hope. You are asking Why me?, yet you don't give up because giving up would mean a life wasted.
Imagine the worst headache you have ever had, now multiply it by 10, now by 100; imagine this every second of every day. Imagine dizziness, fatigue, nausea, body tremors, blurred vision, fainting and much more to top it all off. Postural Orthostatic Tachycardia Syndrome (POTS) is basically a problem with reduced blood volume upon being upright. Kind of like when you stand up too fast and see black, this is what is going on in our bodies, just on a constant, more exaggerated level. Our heart rate sky rockets and struggles to come back down and sometimes our blood pressure drops. The combination of these two lead to the wide variety of symptoms.
It's definitely frightening as well as upsetting. One is forced to change their lifestyle and often their plans, hopes, and goals in life to simply make it through. One day it hits you full force, it also hits you full force during flares, leaving you unable to get out of bed. It feels as if your visions have been shattered in front of your eyes. Every piece representing what could have been, but will never be. Yes, positivity is extremely important. Although, it's even more important to set realistic expectations for yourself, otherwise you are setting yourself up for disappointment. Next time you see someone with POTS and automatically assume their negativity is solely out of fear, sadness, and anger, remember that their negativity is solely a small visualization of their strength. It isn't easy setting your mind up for the worse and deep down hoping for the best. In order to be so negative and realistic it takes a strong soul whom is willing to fight.
Treatment is not a walk in the park. It is something that requires time, hope, and dedication. There are several treatments out there for POTS, although none are a guaranteed fix, you win some and you loose some. One treatment of POTS is something called the Dallas Protocol. The Dallas Protocol is a slow moving physical therapy program that eases patients into being active and upright again as well as build muscle in their legs and abdomen in hopes of pumping blood faster to their head upon standing. A basic treatment option is to increase your salt and fluid intake. Another treatment option includes medications, every symptom being treated with a different medication.
With that being said, to all the fighters out there living with this nasty disease, stay strong. Stay strong for mainly yourself but your family and friends as well. Be strong because hope and strength can go a long way and as dark of a time as you may be in now, I promise it does get better. You will have ups and down, good days and bad days but remember with every down and bad day you are gaining strength and character that will carry you throughout this journey. To the loved ones of somebody with POTS, please love and support us and give us a shoulder to cry on when we need it. Please listen to our requests and take strides to meet them as well as accommodate us when it is needed. Please just be there, because your presence and support can go a long way.
To POTS, thank you for sculpting me into the person I am today. This may sound selfish but you have turned me into one hell of a person. I won't let you win this one, everyday my determination to achieve my dreams grows a little stronger and my mental strength keeps getting better. You have showed me who will stay by my side through it all and you have showed me a side of myself that I didn't know ever existed. You truly don't know what you are capable of until being strong is your only option.
