Dysautonomia Awareness Month Wrap Up Events!

Well, only a few days are left in the first ever Dysautonomia Awareness Month!  There is still a lot going on, we will end the month with a bang. Here is a quick break down of 2 cool remaining events.

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!

THANK YOU!

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!

Claire

Pregnancy and POTS: Experiences & Resources PART 1

This is a big issue for women and families affected by POTS, and the topic I get the most questions about.  Being that POTS affects mostly women of childbearing age, and there are very few resources out there, and even fewer research articles, this is not surprising.   I have heard from patients that their doctors are telling them not to have kids, which is heartbreaking, and the science just doesn't back that up for MOST women with POTS.  POTS already robs us of so many things- don't let it rob you of kids (if you want them)!  If you  don't have any life threatening genetic diseases that can be passed on, are not on any medications that keep you alive that would damage a baby, and really want kids - there is no reason not to consider it in my opinion.   It is a very personal decision.  Your underlying cause of your POTS is a HUGE consideration, as well as your functionality and support system.  Of course consult with a doctor about anything medical, as I am not one.

The issue of what drugs to take, how to plan, and what to expect can make for a frightening experience if you don't get as educated as possible on the subject.

I tell everyone:  PLAN FOR THE WORST, HOPE/PRAY FOR THE BEST.

Things to consider when planning for the worst:

-Do you have a good medical team of doctors, including a POTS knowledgeable cardiologist, a high risk OB, and possibly a neurologist? 

-Do you have a support network in place in case you are bed bound, non-functional, or severely ill during pregnancy?  Especially if you have other children?

-Do you have a support network in place to help with the baby after you give birth, especially if recovery takes longer than expected or you have complications from birth?

-Are you on any medications that could possibly harm the baby, and are you willing to try and function without them if necessary?

-Do you have any underlying conditions that could further complicate pregnancy, and specialists and support lined up to help deal with those possible complications as well? 

Updated Article Library!

LIBRARY: Articles For A Doctor/ER Visit

I have found that many of my local doctors have very little (if any) knowledge about POTS and Dysautonomia.  I usually try and bring at least one journal article with me to give them, and I stress that these are peer reviewed journal articles, not just random stuff from Google or Wikipedia.  They are research studies published in medical journals, and should give you credibility in the doctor's eyes, and if you are lucky, won't bruise their ego :) 

I have categorized them by issues common to POTS sufferers when trying to obtain treatment from both general practitioner doctors, specialists unfamiliar with POTS, and ER doctors.  Most are full text - but some are only abstracts, your doctor should be able to use it to look up the full article if they feel it's relevant.  It is a starting point - I DID NOT CITE THESE IN PROPER SCIENTIFIC CITATION FORM INTENTIONALLY.  Hopefully they are more accessible this way and you can pick and choose which one's you need. You may want to add the most relevant articles to your POTS Binder. If you have any to add or topics you'd like covered, please leave a comment or contact me. 


General POTS Info/Treatment:

1.  The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management (this in my opinion is by far the best synopsis of POTS for any unfamiliar doctor, and the complete article is free) by Satish R Raj, MD MSCI, Autonomic Dysfunction Center, Division of Clinical Pharmacology, Departments of Medicine & Pharmacology, Vanderbilt University, Nashville, Tennessee, USA

2.  Orthostatic Intolerance (an AMAZING guide to all the forms of OI, including POTS, NCS, etc...) Dr. Stewart, Associate Chairman of Pediatrics, Director, Center for Hypotension, Westchester Medical Center; Professor of Pediatrics and Physiology, New York Medical College.

3.  The neuropathic postural tachycardia syndrome . Robertson D., Jacob Recanati Autonomic Dysfunction Center and the Department of Internal Medicine C, Rambam Medical Center, Haifa, Israel.

Great Video: Managing Orthostatic Intolerance/POTS/CFS by Dr. Rowe at Hopkins

Wanted to share this - it was posted on Dinet and I found it very informative.  There is a lot of research about the fatigue that accompanies POTS/Dysautonomia and the overlap with CFS, and according to research, people with POTS have more intense CFS (Chronic Fatigue) than those without.

On a personal note, Dr. Rowe was the only doctor to step up and recommend treatment for me while I was at Hopkins and pregnant, and consulted with my team that had no idea what to do for me, even though he is a pediatric doctor.  He personally responds to emails, even though he is so busy he is no longer taking new patients.




Here is the most recent paper published on the subject:

Clin Sci (Lond). 2012 Mar;122(5):227-38.

Increasing orthostatic stress impairs neurocognitive functioning in chronic fatigue syndrome with postural tachycardia syndrome.

Ocon AJ, Messer ZR, Medow MS, Stewart JM.