Without a reason or a purpose, we might still be searching for Meghan's diagnosis. Most patients go a ridiculous 3 to 6 years average time before being diagnosed - with 60% of those patients told it is in their head. Without swimming, we may have accepted what doctors told us - drink more water, eat more salt, eat healthier, see a therapist. But it made no sense...and ALL Meghan wanted to do was return to competitive swimming. She sat on the side lines for 2 very long, hard years. Too dizzy, nauseous, and fatigued to swim.
Exercise is one of those things that a doctor will tell everyone to do - for all conditions. And for POTS, it is no different. But when someone has POTS, the inability to pump an already low blood volume through-out the body makes exercising extremely difficult. Blood that is needed in muscles during exercise takes away from blood that your brain needs - leading to lightheadedness and dizziness which leads to nausea and fatigue. No exercise leads to more symptoms - a cycle that is difficult to break without help from a knowledgeable doctor.
Swimming was the biggest reason we didn't give up. It drove us to search all avenues possible. The world has become a very connected place and learning about the newest research gave us hope with the internet playing a huge role in helping to find answers. Since Meghan has started her treatments (see our post about IVIG Therapy), she has improved greatly. POTS is progressive and less than a year ago, she was struggling to get through a day at school. Family vacations were no longer possible. Even an afternoon at the museum or the mall was hard on her. All she wanted to do was stay home. Anyone who knew her before POTS, knew a kid who had more energy than the average pre-teen.
Her treatments have probably improved her quality of life by 60 to 75% so far. The improvements have leveled off noticeably - which we knew would happen. We don't know if her body will take over and fight the remaining 25 or more percent, or if she will need indefinite treatments to remain at this level. She still suffers from her long list of symptoms - just a lot less - leaving her able to return to some of her favorite activities. Some stomachaches continue to be a bother to her. Dizziness after sitting or standing for prolonged periods is still an issue. Adrenaline release causing anxiety is still an issue. A higher than normal muscle and overall body fatigue is still an issue. She is often in bed before 8:30 pm. But the one thing that is gone - the dizziness when swimming. She has returned to the thing she loves. And fortunately for us, her love of swimming keeps her going and wanting more.