​Meg's Story

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,

We hear it often - POTS must be rare. But it's not! Just not well known. Most likely you will have come in contact with someone who has it or someone who knows someone with it. Being aware could help someone save a lot of time, money, and a huge amount of frustration. At Meghan's high school alone, there are 4 current students and 2 recent graduates with POTS - 1 in a wheel chair. ​ Knowing the symptoms - dizziness, racing heart, lightedness, fatigue, nausea, stomachac

Understanding an invisible illness is hard. Maybe as hard as handling some of the symptoms. I think if you haven't witnessed it, you may not believe it - witnessing the behind the scenes stuff. The nausea or extreme fatigue at the end of the day. It's hard when someone sees a moment in time of happy and smiling and says that things must be better. This article posted on the Articles tab of our webpage about Crohn's disease is a good one - No One Understands My Struggles

Guilt. I think this is one of the biggest reasons that patients who suffer from an invisible illness pretend to be fine. I know that Meghan pretends to be fine because she hates to miss out - she loves doing things. But it wasn't until I read her post on how she felt during the first 2 years of our search for answers, that I realized she felt guilty, too. She felt that if she didn't feel good, we all missed out on fun things. We used to do a lot of traveling, which becam

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 Al

In February 2014, it was announced that a small study had identified a possible bad antibody that was responsible for causing POTS. The auto-antibody is thought to be interfering with adrenergic receptors in the body that interact with certain chemicals the body releases to complete different functions - like constricting a blood vessel or increasing heart rate. Trying to keep things simple - beta receptors are receptors on a heart cell that interact with epinephrine (adrena

Meghan is now up to her 10th dose of IVIG. It really seems like years have passed since the first one, although it's less than 1 year. It was much tougher than we thought it would be, even though we knew typical reactions. Pictured in this post is Meghan's very good friend Miranda. It was taken during one of Meghan's summer doses and Miranda insisted on coming along to keep her company and pass the time. She wanted to come even though she had to get up at 5:15 am (she ma

​When we first started looking for answers to Meghan's symptoms, doctors began running lots of blood tests. She gave so many tubes of blood - which often made her feel worse since her blood volume was already low. I had all of her results stapled together by doctor or facility and would often highlight or compare results trying to find something that someone had missed or something that was near the upper end of a range. It was frustrating because the results always came

There are currently no approved medications for someone with POTS. Doctors typically prescribe drugs "off-label" when they are used for something other than the drug's listed condition(s). With the new thinking that POTS could be an auto-immune type syndrome, it becomes increasingly important to get drugs on an approved POTS medication list. These are often very expensive and it is difficult or impossible to get insurance companies to cover off-label drugs. Some medicatio

POTS patients typically have low blood volume - which contributes to the difficulties of pumping enough blood through the body. Drinking water can help increase blood volume, and doctors recomment 75 to 100 ounces a day (2500 to 3000 mL). Meghan pretty consistently drinks 6 Propels a day. This is in addition to any other drinks she may consume during the day. POTS patients also generally need lots of salt. Why salt? It naturally increases blood pressure. It is actually