To the kid that was just diagnosed with POTS:
You may have been lucky enough to receive a diagnosis at the first sign of trouble, but that is highly unlikely. Most likely you have suffered for weeks, months or even years and have just recently heard the word “POTS” from the seventh specialist that you've seen this year. Or, like many others, maybe you haven't heard of it at all.
POTS, or postural orthostatic tachycardia syndrome, is a silent illness. You appear to be fine--to your friends and family, as well as medical imaging and testing. For all anyone can tell, you are perfectly healthy, but you feel far from it. POTS is an autonomic dysfunction that causes blood to pool in the lower half of your body. This is fine while you are sitting or laying down, but as soon as you stand up your heart cannot pump the blood quickly enough to the upper half of your body which, in turn, causes dizziness, heart palpitations, and fainting.
Even though it is estimated that one teenager out of only 100 suffers from POTS, very few doctors are educated on the syndrome, or even know that it exists. Because of this, many POTS patients, like yourself, spend years searching for a diagnosis and treatment. Years that should have been spent at homecoming, track practice, and late night sleepovers are wasted in doctor’s offices and hospital beds.
You are probably suffering from a myriad of the sister symptoms of POTS including migraine, vision problems, fatigue, nausea and unexplained chronic pain. It is unbelievably frustrating to see countless doctors, but continually leave the office without an answer, or even a plan for treatment.
Though I know that you probably feel frustrated, angry, and maybe even a little hopeless after searching for treatment, you must find it yourself. POTS, though it may feel debilitating, is not. The best advice that I can give you is to simply acknowledge the fact that you don't feel well, and then take the steps to move past it.
Create a schedule for yourself that will allow you to begin to function again. Wake up on time every day and get yourself moving. Exercise may feel impossible to someone who has spent many hours bedridden, but it will make you feel better. When you exercise and move your body, your heart is better able to pump the blood from your toes up to your head.
Drink water until you are full. And then drink some more. People with POTS need nearly double the water as anyone else to keep your blood volume high which prevents fainting. Then, when you find that you are going to the bathroom every half hour eat something salty. Salt allows your blood to better absorb the water that you are drinking and will keep you upright.
Exercise, water and salt are vital to recovering, but so is perseverance. Drinking more water and exercise will definitely help, but not immediately. It takes weeks of exercising daily and eating more salt before you finally begin to feel better. But, I want you to trust yourself and find the determination to get out of bed and not fall back in it an hour later. Just because you don't feel good is not an excuse to stay home so start building up that iron will now.
Get out there and stop POTS, instead of letting it stop you.
Leah
My hope is that this letter garners awareness for POTS or is even read by someone struggling with it. POTS affects so many people and the more people that know about it, the more that it can be helped.
