Why I started watching YouTube (Dysautonomia) - October is Dysautonomia Awareness Month

Back in February I was diagnosed with Dysautonomia. I had never heard of it. The doctor had to repeat it 3 times and spell it for me. He ended up writing it down. He told me to go home and look it up on the internet. That led me to YouTube. Most of the people on YouTube with Dysautonomia have POTS, postural orthostatic tachycardia syndrome. That is not exactly what I have but it is close. Some say there is no difference but I feel like there is. I have Orthostatic Intolerance. My definition of that is when I stand up my body says, "you wanna sit down" and pushes me down no matter where I am. I don't actually pass out. I just really have to sit down and don't have much of a choice. My heart races and my blood pressure gets high. With POTS the blood pressure drops and they pass out. Some people pass out several times a day. If I have this right what happens is when a person stands the blood pools in their legs. The blood pressure rises to bring the blood up to the head. In POTS, since the blood pressure drops the blood stays in the legs and doesn't get to the head so they pass out. With me my blood pressure rises. That's probably why I don't pass out but I still have the blood pooling in my legs and have to sit down. The tachycardia must have something to do with it.

I have a good cardiologist and a good neurologist but I don't really have a Dysautonomia specialist. So I have actually learned more from YouTube about this condition than I have from my doctors.

I take Metoprolol to keep my heart rate down and Lisinopril to keep my blood pressure down. I use a rollator. That is a new word for me. I call it a walker. But it has wheels and a seat so it's a rollator. It's a nice one. Red. Carbon fiber. Light weight. In my dreams I don't use it but in real life it makes me much more functional. I have to make sure I have electrolytes so I salt everything. I drink Powerade Zero. It is sweetened with sucralose. That is one of the healthier artificial sweeteners. I get 1 liter of IV fluids twice a week. If I don't I end up in the emergency room with dehydration. I am not sure how that fits in. They recommend compression stockings to help push the blood up. The thing is, they are very expensive and insurance won't pay for them. They are also very difficult to put on. So, I haven't tried them yet. I did get an abdominal compress. That is supposed to help because blood pools in the abdomen too. When it arrived in the mail I put it on. It hurt. I wore it for a few minutes. I got light headed and felt very sick. I have not tried it again. I should probably point out that I do have many abdominal and digestive issues so maybe the abdominal compress will work for someone else but not for me. This condition also causes nausea. Fortunately mine is not as bad as what some people experience so I have gotten by with zofran and tums.

I am confident that my daughter Edna has POTS. She passed out a lot as a teenager and has a lot of the symptoms still. She is going to see one of the top Dysautonomia specialists in November. My older daughter, Kimberly passed out a lot as a teenager but she is more confusing. We are confident that she has hypoglycemia so if she has POTS or Orthostatic Intolerance it is harder to tell. It's not bothering her bad enough to look into it at this time.