Patients with neurological conditions often feel like no one believes them. That it's all in their heads. It's even more frustrating when your doctor feels the same - and we saw more than one doctor who felt that way. My First Two Years post talks about the incredible reactions we got from doctors and how degrading and discouraging it was. Here is a great article from our Articles page about another teen in high school struggling with POTS - When Doctors Told Me It Was All in My Head.
Unfortunately, it is very common for patients with POTS to search years for a diagnosis. Meghan wanted to swim so badly and with the new discoveries of an actual "POTS" antibody and the auto-immune thinking, we pushed very hard for answers other than the normal response to drink lots of water and eat lots of salt. We were lucky that it only took 2 years to get a plan in place for her. See the article called Medical Nemesis: The Cycle of Physican Caused Anger, Despair, and Death for further thoughts on doctors not taking patients seriously. Diagnosing patients with pyschiatric disorders when the symptoms are not "just in their heads" happens more than you think.
At one of Meghan's many doctor visits, we talked about her daily stomachaches and how she would throw up if she ate too much. It all sounded innocent and true - and it certainly was! But when I said it out loud, it sounded like someone with an eating disorder. The nurse starting questioning further, and I suddenly realized she was wondering about Meghan's home life and if she was being cared for the way she should. I began to worry whether or not they would let us leave together. And I have had more than one doctor or nurse scold me for how Meghan ate. They didn't believe me (or her) that there was something more to it. It really had to do with her body not digesting food properly - which is very common for someone with POTS. Digestion is an automatic function that your nervous system controls and people with POTS have multiple functions that are affected by their unreliable nervous system. It was definitely a scary time for her and I. An article from our Articles page, "Controversial Child Abuse Epidemic Tearing Families Apart" is a good one. Meghan also has EDS (see our post on EDS) which can cause easier than normal bruising or other joint injuries - this has not been an issue for us but the article gives an example of a child with EDS and how doctors questioned some of the symptoms.
Many POTS patients struggle with anxiety - which adds to the "it's all in your head" attitude. But it is an anxiety that their bodies are tricked into feeling. Meghan would often say to me that she felt nervous - for no reason - we would be playing cards or watching tv. But now we know it was caused by her body's racing heart and adrenaline release that weren't properly controlled by her nervous system. Her blood pressure needed to increase (most likely from body position change or increased body movement), but it wasn't increasing. Her body would compensate with a racing heart and then release adrenaline to try to raise her blood pressure. She would then feel anxious (imagine how you feel when your heart is racing before a big race or speech). This can happen to her at any time during the day and no one knows it or sees it. Deep breathing can help to alleviate it somewhat - often times she just has to wait it out.
Learning to deal with POTS has affected our whole family. We have all had to learn to understand. The past 2 years have been hard trying to find balance and to stay positive. We are fortunate to have found doctors who believe us!