Saturday, July 14, 2012

Webinar Topic Suggestions? Top Researchers Participating!

Hello everyone....

As you know we are starting up our new non profit, Dysautonomia SOS, and we are working with NDRF (National Dysautonomia Research Foundation) on a few projects.

One of these is a series of webinars with some of the top researchers in the field of Dysautonomia from Vanderbilt and Mayo (among others).

What topics would you like to see covered?   We are collecting broad topics, and even specific questions if you have them to get an idea of what is needed by the patient community.

Please comment here, message me, or email me with your suggestions.  More details to come!


And on a side note - we are SO excited about the amazing team that has come together for Dysautonomia SOS!  We have a team of amazing volunteers, Medical Advisers, and all kinds of people contributing to make this a successful and impacting organization - not just in our region, but everywhere.  

If you are interested in sharing your story, volunteering, or getting involved in any way let me know.  

Have a great day!



  1. different types of POTS and what kind of test need to be done to find out
    treatments for each kind

  2. What's the deal with hypovolemia, and why does IV saline work so much better than by mouth?

    Also, how common is it for POTSys to have a specifically identifiable root cause (if the doctors go hunting for it), and what are the theories behind what's causing POTS in people that don't?

  3. Small fiber neuropathy/autonomic neuropathy in relation to POTS. I haven't seen many articles that directly link POTS to SFN, yet so many of us are carry both diagnoses. Would like experts to discuss this topic.

  4. What is the connection between food allergies and POTS?

  5. My extremely smart, highly motivated, active, 13 year old daughter developed symptoms almost overnight last year. She complained of daily headaches, stomach pain, nausea and dizziness. Her symptoms increased and progressively worsened. After 9 months and seeking treatment at TCH in Houston (we live in Florida) she was diagnosed with POTS - primary. What do you think triggers this in children and realistically -- what is her prognosis for growing out of it later? Why is she experiencing cognitive dysfunction? She can't even study for tests the night before because she won't remember it. She also has trouble grasping concepts she has known for years. Why is learning so challenging for her now? She has 10 symptoms that come and go intermittently with at least 4 of them present all the time.

  6. Treatment of POTS with IVIG and how POTS sufferers respond to this treatment.

  7. What other treatments can be done through iv to help with n.m.s.?? Marijuana blocks the receptors that produce neuropenephrin and epipenephrin, how is that helpful in treating dysautonomia patients??

  8. These are great! Thanks you!