Research

Dysautonomia tag

Welcome to the research page! As a biologist, I love reading the literature, figuring out what is up and coming in the dysautonomia community, and sharing that information with others. Because dysautonomia is a relatively unheard of condition in the medical community, it is important to be self-knowledgeable about it, so that you may best advocate for yourself and get the best care you can.

I will post periodically summaries of articles that I have come across and found interesting. Hopefully you will enjoy them as well!

Here are some helpful links!

CHOP_Modified_Dallas_POTS_Exercise_Program

The Dallas Modified protocol is very similar to the Levine Protocol, but it is available free online to take to your doctor. Doing physical therapy for my POTS was a GAME CHANGER. Luckily, I was able to start PT about a month and a half after symptoms started so it has really been part of my POTS recovery from the very beginning. I know it may seem daunting, and you may think, “there is no way I can exercise with POTS!” But I must say, I started with TWO minutes in April 2017 and can now do 50 on the recumbent bike in April 2018! You got this! Just start slow and keep at it 🙂

MCAS Symptoms and Triggers Sheet

MCAS or Mast Cell Activation Syndrome is one common underlying cause of POTS. If you find you are allergic or have reactions to a lot of things or the weirdest of things, get flushing, or have hives, you should probably look into MCAS. Taking antihistamines daily and eating a low histamine diet has greatly helped my POTS!

Underlying Causes of POTS

My personal belief is that finding your underlying cause is KEY to symptom relief and possible remission. If you feel any of the causes may pertain to you, bring it up with your doctor. Its YOUR life! They may not want to have to deal with going through all the tests for the conditions you may have risk factors or symptoms for, but in the end, you are the one who has to deal with dysautonomia day in and day out. Advocate for yourself! 🙂

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