Fainting: The Final Frontier ( and Neurally Mediated Syncope)

Fainting. 
The final frontier. 
These are the voyages of the vertically impared, set out to reach new heights of embarassment - flashing panties and falling where no one has fallen before. 

(Dooo-do-do-do-duh-duh-dum dhuuuduum!) <----That was Star Trek Next Generation music/refernece for those of you that happen to not be nerds.

So lets talk fainting.  I have been writing furiously for the new Non-Profit I am helping co-found (Dysautonomia International - website coming soon!), and by far the most difficult subject to summarize into a consise, easy to understand format was syncope and NMS (neurally mediated syncope).

So, here is a brief run down on fainting and fainting related dysautonomia disorders.

Syncope = Fainting = Passing out.  This means you have lost consciousness, or have come close and have gotten horizontal in time to prevent the actual faint, otherwise known as "pre-syncope."  This happens because there is not enough blood in your brain.  Many perfectly healthy peeople faint during their life time, and it is a one or two time event - and they have no other health issues causing it or as a result.  Or - it can be a sign of something serious.  There are many types of fainting, the most common being vasovagal, or reflex fainting.

Save the Drama for Your Mama (and the Grinch)

I am fairly new to the Facebook online support community for Dysautonomia and POTS.

This has nothing to do with this post. But I like it.

I have been a member of DINET for years, but stayed away when I was feeling well - it had become depressing and was scaring me that I would end up like others on the forum (ironic, since I now am!).  But the forum was always kind, safe, supportive, and closely monitored - and I feel the people on there are super nice and not the types to attack others who have differing views.  Nothing has changed, if you are looking for smart people to help you navigate resources and deal with dysautonomia, you should check out the forum.  I became active again (it had been so long I had to re-register!) while half dead after all my pulmonary embolisms and in the hospital in early 2011.  I'm glad I did, and I still am on there a few times a week reading and sometimes posting, because it is such a great place to find support.

After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well.   This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up.  I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.

Finding Your Cause: The Project (need your help!)

I am on a "Find your POTS cause" crusade, which I think actually applies to Dysautonomia in general as well.  I have a plan for compiling a large printable sourced guide that you (and I!) can hopefully use to try and navigate the diagnosis process and make it a bit easier.


So this will be a multi- part process, and I need your help!

• Part 1 was explaining the need for this, exploring the definition(s) of POTS, and getting a starting point collection of known causes of POTS together with medical journal sources and citations, and I have received awesome feedback with suggestions for additions to the post: What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide

 

• Part 2 will involve adding the appropriate testing for all the causes listed in part 1, and separating this into a new printable guide.  If you are up to helping on this, please contact me!
  
  
  
  

• Part 3 will involve personal stories of people living with these diseases, causes, and issues related to POTS.  I'd like to feature a brief (or long if you prefer) write up on a persons journey to getting their cause diagnosis.   PLEASE CONTACT ME TO IF YOU'D LIKE YOUR STORY FEATURED!  Stories of success and hope are needed as well! 

   

  Thanks everyone, and much of this will hopefully transition over to the new Non Profit I am founding, Dysautonomia SOS.   More details on that coming soon.  Lots of work going on behind the scenes, very exciting stuff!

  ---Claire

 

Hopeful Dysautonomia Video from Lette!

This is Lette from Irish Dysautonomia....and I LOVE THIS VIDEO!  There is hope for everyone, and some very wise advise in this video, watch the whole thing if you are up for it!





I have had periods of remission as well; and know that food, physical activity, and not becoming depressed by living on the support group boards are all important factors in improving quality of life. Remissions and recovery DO HAPPEN! What has helped me currently in my yucky state of full on POTS/Dysautonomia is trying to help others empower and educate themselves (and myself), and finding BALANCE. Wishing you all a HOPEFUL day! --Claire

Nominate a POTSy Mom or Dad!

Hey everyone!

My munchkins <3

With Mother's Day and Father's Day fast approaching - consider nominating your favorite POTSy parent for local and national "Best Mom" or "Best Dad" !

I know loads of amazing parents caring for their kids that have POTS, as well as POTSy parents trying to raise kids while battling this condition.  We know how hard both are!

That person may win a cool prize AND get some much needed publicity/awareness for POTS!

What Is Causing Your POTS? And Why It IS A BIG DEAL: A Printable, Sourced Guide.

Many of us hear by our doctors that POTS is "no big deal." 

Or they just plain have no clue what it is.  

Or, "you just have POTS."

Why do they think this?  Why don't they know what it is?  If an estimated million people have it, and even more have dysautonomia in some form, why don't they know?

As  patients (and hopefully the caregivers that see how sick we can be on a day to day basis), we know how big of a deal it is.  We know what a struggle POTS is, and how unpredictable and disabling it can be, even if it is generally mild and flares occasionally.   So why is this the view by so many in the medical profession, and why is it so unheard of?   I have been contemplating and compiling this list for a while now, and in light of the people we have lost recently in the POTS community, I thought this may be useful for those of us trying to find the cause of our POTS.  Also to explore why it is a big deal, even if POTS per say will not kill you, and why, in my opinion, it is absolutely necessary to find out what is causing your POTS.  Not only to rule out the really dangerous stuff, but to avoid the medication merry-go-round, as I like to call it.     

Keep Calm, It's All In Your Head...

WEGO HAWM CHALLENGE DAY 9:

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? 

Um, yes!  Here it is....

#HAWMC Day 8: Best POTS Convo Ever

WEGO HEALTH ACTIVISTS WRITERS CHALLENGE: Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

"We have a great new drug for you to try, it cures POTS and dysautonomia." --Doctor

"Really?  You can't be serious." --Me

"And (dramatic pause), we figured out what was causing all your random food reactions, and you can now eat whatever you want." --Doctor

"This can't be real." --Me

"You will be walking, then running, and able to scuba dive and snowboard again. You'll be able to care for your kids, have wild nights out on the town (and indoors) with your husband, and you can eat out wherever you want." --Doctor

I'm Angry and I Know It (wiggle wiggle wiggle): Day 7 WEGO Challenge

WEGO Health Writers Challenge Day 7: Health Activist Choice! Write about what you want today.

I'm Angry and I Know It (Wiggle Wiggle Wiggle)

Well then, this will not win me any "she has such a great attitude" points, but today I want to write about how much I hate my life and am angry right now.  Because it sucks.  I am pissed, and there will be swearing- oh yes, there will - and you have been warned. This is not a pity seeking post, its an explanation of what life is like, and how you can better understand and be there for any person you know with a chronic - or LONGTIME - illness.  Not to be confused with the flu or allergies you have been bitching about on twitter.

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.