- CASE FILE
POTS/Dysautonomia is NOT uncommon, but doctors still don't know about it. We need to inform the public and doctors.
ABOUT THIS CASE FILE
POTS is a form of Dysautonomia (malfunction of the autonomic nervous system). There are many symptoms and issues with POTS since it affects the ANS. Many have issues with gastroparesis, inner ear issues, vision issues, neuropathy... it goes on and on. The biggest one (also diagnostic requirement) is when I stand, or even sit, my vascular system fails causing the blood in my body to head downwards. My blood pressure drops and my heart rate jumps drastically in an attempt to get oxygen/blood to my brain. This continues until I stop standing, it does not regulate. My husband jokes that I am always getting a cardio workout. Many people with POTS pass out, often. I am incredibly fortunate in that I have great health insurance, fantastic doctors (diagnosed at Stanford, confirmed at Mayo) and a wonderful family and support system. So many others do not. On top of that there is so little knowledge out there, not just meds/cures, but the vast majority of doctors don't know about it (it also is not in your options for diagnosis) and all too often patients are told that it's all in their heads. As this is an invisible disease (I look fine, but I feel AWFUL) and it mostly affects women, a lot of doctors (and certainly family and friends of many who suffer from it) give no answers to their patients, either because they have none to give, or because they don't know about it and, thus, don't give it any merit. The worst part about this is that it is believed that POTS is NOT UNCOMMON. So, there are a lot of people out there who are suffering and are being told that not only is there nothing that can be done, but it's all in their head, or they're lazy (working out, or working, can be incredibly difficult). So, they have NO support system. Imagine knowing your body isn't working, but having family, friends, and the medical community tell you you need to drop the act, stop complaining, and stop being so useless. Like many with POTS, I have other issues as well, and they get labeled as idiopathic and there's not much that can be done but treat the symptoms. This means a lot of medications. For people who don't have health insurance, or a doctor who knows what they're dealing with, this also means that meds are unavailable. There is a lot of suffering, feeling useless and helpless, and frustration over doctors who can't or won't help. Awareness is essential. Something as simple as taking a blood pressure reading while the patient is standing after one taking supine (or even sitting) would show that there is something wrong. I was actually patted on the head by a doctor once. He might as well have said "There there little lady" before he said that I wasn't feeling well because I was tall, thin, and had small children. I was having vertigo at that point. He never sent me to a neurologist, sending me to a psychiatrist instead. This just exacerbated my stress level over how I was going to function and, no joke, the psychiatrist put me on anti-depressants that made me lose weight I didn't have to lose and ALSO wouldn't listen to me. POTS affects women and men, but a great more women (I think it's 85% of those diagnosed are women). The other day someone said that they went to a doctor who knew about POTS, but he told her that ONLY MEN get it. I don't expect a cure or to suddenly have my life back and be able to do the things that make me happiest but PLEASE help us inform the public about POTS and Dysautonomia. It may not be deadly, but it does steal our lives in many ways, and you may well reach a great number of people and make a huge impact on their quality of life. Who knows, down the road it might even lead to some answers or new treatments. This is a great website for information and I've linked the page with ten things doctors need to know about POTS, which is essential to most of us as we are informing our doctors more often than the other way around. I can't even imagine how much less stress people would have if their doctors just knew it existed. Help them by spreading the information. Please. I'd rather not be on the show, but if that is necessary for the issues to be addressed I would do so.