shoshan

I'm so sorry, that sounds awful!

Hello! I am involved in organizing a class on dysautonomia for EMS (Emergency Medical Service) providers. I'd appreciate if you all share any positive or negative experiences you've had with the EMS system or providers, so I can gear the instruction to the needs of the dysautonomia community. Have you ever needed to call for emergency medical assistance? Please describe your experience. Did the providers know anything about your form of dysautonomia? What information and/or sensitivities do you wish the providers would have had when responding to your call? Thank you!

I've taken steroid inhalers for asthma prevention, although I'm not on any currently. I do have albuterol inhalers and EpiPen in case of emergency, but I don't take them often because they make my heart race. I find that sometimes it helps my O2 levels to get into a supine position. I assume that's probably when POTS is the main issue, not the asthma, because during a traditional asthma attack it's easier to breath in tripod position.

I find that when I get extremely tachycardic upon standing, my O2 saturation goes down to about 80. I also have asthma and have a really hard time differentiating which condition is causing the problem during an episode. I reason that breathing is an autonomic function, so they may very well be intertwined.

I haven't received them yet either.

I get the flu shot every year, and it always causes a flare. However, it is worth it for me to possibly prevent getting sick with the flu, which sets me back for a minimum of three months. I find I catch every germ that is going around and always get very sick. Ultimately, the decision on whether to get the vaccine will be made by my doctor.

I have gastroparesis. It was diagnosed by Gastric Emptying Scintigraphy, or GES for short. It's done in the hospital in the Nuclear Medicine Department. They give you radiolabeled food to eat and then scan over the next few hours to track the food's progress through your digestive system. Since digestion is an autonomic process, in some patients the food takes longer to digest, which causes symptoms. Severity of the digestive delay doesn't necessarily correlate to symptom severity, so you should check it out even though you say symptoms aren't too crazy.