Health, Unveiling Invisible Illnesses

Dysautonomia International Education Day

Dysautonomia International Education Day in Clearwater, Florida 11/09/2019


The Education Day in Clearwater was great. I definitely would love to host a local (Brevard County) get together soon. I would love to have more time to talk and get to know the other warriors. Here was my quick take on everything:

It was pretty cool to hear that 30 different universities are currently studying dysautonomia. Lauren Stiles said the push for research funding comes from us patients wanting answers. It is assumed that 1-3 million people have POTS. Dr. Laura Pace (neuro gastric MD) says “we need to treat the cause, not the symptom.” Amen! She also had an amazing point that some of us (especially with Mast Cell) can develop eating disorders as a protective mechanism from symptoms. She had a case of a young girl that was diagnosed with anxiety and eating disorder but after Pace’s testing, she actually had severe gastroparesis and POTS. She is a huge advocate for the Smart Pill.

Dr. Raj was awesome! He was very funny and witty. He had pointed out that many patients do better on low dose beta blockers vs. the typical higher doses that are prescribed. I completely agree as my doctor originally had me on a very high dose, which bottomed out my bp and made my heart even more tachy. I do much better with low dose. Dr. Raj also briefs The Faces of POTS journal (2019, B.H. Shaw, L.E. Stiles, et al.) and points out that 89% of patients missed school, 28% were homeschooled, and 25% dropped out of school as a result of their POTS (B.H. Shaw). Dr. Raj recommends exercise tips, suggesting every other day or 4x per week for 30 minutes. He suggests if you are done and quit in 13 minutes then you need to go slower, pacing yourself. He does not suggest upright exercises. Behavioral therapy is also important in dealing with chronic illness; Dr. Raj states, “ultimately people have different strategies for learning to cope.” Yoga, therapy, SSRIs, mindfulness etc. are different options in coping (2019, Dr. Raj).

Dr. Laurence Kinsella (neuro) had great recommendations for CBT (Cognitive Behavioral Therapy) to help with coping. I also love that he mentioned “symptom snowball” which makes diagnosis tricky because of the long list of symptoms that we have. He discusses the longterm effect of meds used for migraine treatment and suggests Migreleif as a holistic approach, along with an elimination diet. He also suggested a free course to help with sleep management: free mindfulness course.

It is great to have a community driven for change, giving answers to the patients and education to health care providers. Dysautonomia International is not only raising awareness and providing education, but they are advancing medicine in a grey area that leaves millions in the dark. They are shedding light and discovering much needed answers, with much more to come.

Print Outs:

10 Facts About POTS

What is Dysautonomia?

10 Facts About Dysautonomia

Health, Unveiling Invisible Illnesses

Invisible Illness – Dysautonomia Awareness at Local Emergency Rooms

I have not been confident in my local emergency department to care for me, due to dozens of terrible experiences. Am I mad at them? No. Is it their fault? Not really. This ER is 2.3 miles from my home. I can be upset or I can do something to help myself and others. Thanks to Dysautonomia International, I have access to educational printouts for physicians. I have dropped off information to the ER director and plan to follow up with a call today since he was unavailable.

I want the entire staff to be aware of medical issues that present themselves as ANXIETY. Please rule out other possibilities! Dysautonomia does not show up in blood work and it is common in young women, who are constantly dismissed and labeled with anxiety. There are many causes for it. My underlying condition is Ehlers Danlos Syndrome. Many ERs only factor in ONE complaint and the other 10 issues get tossed aside, which could help solve the puzzle.

Times are changing. I am joining the medical field as soon as I can and I am fighting for a new way of healthcare. This is my ER and I refuse to be afraid to come here, if I am in a life or death situation, because of the lack of knowledge of invisible illnesses. Learn my name. Set aside your ego and let me teach you.