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.

Why I Write About POTS: #HAWMC Day 4

Day 4 WEGO Health Challenge:
I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.

The main goal of this blog was to create resources for patients and awareness for the public for POTS.  I had none when I was diagnosed, I don't want others to go through the same.  I write on my personal blog over at Bye Bye Bella Flora for therapeutic and personal reasons, but this site was created to help others, and by doing so it helps me as well.


In my pre-POTS days, I wrote for scientific publication as a marine biologist, and enjoy reading and researching, and hopefully sharing that info with others.  I have no desire to be profound or poetic, I like to link out to others that do that for me.  I don't normally post inspirational quotes like the one on the right.   I'm more science minded - and I want patients and families to have a place to find resources for dealing with everyday life: tools for dealing with family, friends, employers, DOCTORS, and medical professionals as a whole, because my journey has been a bit rocky with the MD's.  

I also have a passion for silliness, and the best way I've found to cope with this ridiculous disease is to make fun of it sometimes.   Laughter is how I have survived the last decade, and especially my nine months of confinement in the hospital, and now seven months at home with no outings.  This blog gives me purpose for now, at least I feel I'm trying to do something, instead of rotting in bed doing nothing. 

I've been a bit lax recently in posting new links and resources because of the new BIG project I'm helping found, and I can't wait to share more with everyone.  The next few years are going to be very exciting, and changes - they are a coming!  For the better.


Sending love and thoughts of upright posture.....
Claire

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.

Day 2: Yoda Does POTS (favorite quote)

Challenge: Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

Well, this was a really really easy pick for me - I have an absolute favorite quote that I have both a love and hate relationship with in terms of my chronic illness, POTS.


 Drum roll......

My quote comes from a little green man who has inspired me my whole life. His name is Yoda.

"Try not. Do, or do not.  There is no try."

I even found a nice graphical illustration for the quote:

Why I love this quote:

It's completely true.  There really is no try.  You either do something, or you don't.  I'm not TRYING to oversimplify, I actually AM oversimplifying.   

The definition of try is (according to the The American Heritage® Dictionary of the English Language):

try  (tr): To make an effort to do or accomplish (something); attempt: tried to ski.


Why I hate this quote: 

It leaves no room for excuses, and I admit I still fancy a good excuse once in a while.

"Trying" to me implies failure.  

"Did you do your physical therapy exercises today?"

"I TRIED, but I wasn't able to." 

What that means in my life is that I actually DID three or four reps, felt like my heart was pounding out of my chest and my muscles were spasming painfully, and I stopped.   So I didn't just try, I did it.  I did not fail.  I did not complete the entire task or goal, but I DID something.

If I skipped doing my PT all together, than I did not try, or DO any PT.  And there is nothing wrong with that.  Some days I can't even get out of bed for much of the day, and can barely make it to the restroom.  I have to consider what to spend my limited energy on, as I have a 7 month old that I care for alone while my husband is working, and a four year old that I like to be functional enough to hang out with in the evening when he gets home.

I know that on bad days, "trying" much of anything will land me in even worse shape for a week afterwards.  I have learned to trust my body, and push my limits when appropriate, and DO when appropriate - but I have finally gotten to a place where I am ok with not doing as well.  

And there is no try.    Simple as that.

New Autonomic Clinic Opening in Norfolk, VA (NEAR ME!)

So for any Virginians (and other East Coaster's) that haven't been able to get a full autonomic work up - I have great news!  (Insert happy dance while seated!)

I met with Dr. Chemali, who just came to Norfolk, VA from the Cleveland Clinic, and specializes in Dysautonomia, and has worked with some of the best minds in the field.  As we all know, Mayo, Vanderbilt, and Cleveland Clinic are where you go to get quality autonomic testing done.

Well, he is opening a full lab right here in Norfolk!  It will be located in the new Heart Hospital of Sentara Norfolk General.  My understanding is that it will be fully up and running in September.

This is a God send for me, and I think many others.  There is a SERIOUS shortage of proper equipment to diagnose Dysautonomia in Virginia, and even more so there is a shortage of specialists. Some facilities may have a few tests they can run, but their doctors don't really diagnose and treat the big picture that is dysautonomia.   I was shocked when Hopkins had no one to help me while I was there.

My hope is that Chemali will train up a few doctors and get the ball rolling, or maybe bring in another specialist or two, and start seeing patients and doing clinical trials/research like crazy.

Here is a link to Dr. Chemali and the Neurology Group's Info.   No one else in his group treats dysautonomia of any sort (I've seen a few - don't bother), so make sure you ask for him.  His nurse and the staff are very nice.  This is very exciting!

Now; a quick illustration/exploration of various happy dance options (modified to work with your POTS of course):

the nun happy dance

the Calvin and Hobbs happy dance

the robot with no arms happy dance

the cool turtle happy dance

the all time classic Snoopy happy dance

Hope everyone is having a great and unPOTSy day!
--Claire

What The Hell is POTS?

I made this based on a pole of the experiences of POTSies in the ER, and hopefully as a funny educational tool.  It is a bit PG13, the only bad language is "freaking" and "hell" said many, many times.  Feel free to share.  Enjoy!

Skype Meet Up Tonight! 8PM EST

Hello VA/DC/MD (and beyond!) POTSies!

Tonight is our first try at a Skype meet up!  Until we get enough people participating that we can split up geographically - I opened this up to anyone anywhere affiliated with POTS - including parents, caregivers, etc...

In order for you to participate, I need you to send me a contact request so I can add you to the conference call group "Team STOP POTS".

Here's how to do this:

1.  Get a FREE Skype account at www.Skype.com

My Guest Post of Living With Bob: Staying Sane With A Chronic Illness

I was honored to have this article published by Rusty Hoe on her popular blog - that I adore - Living with Bob (Bob is Dysautonomia).

 If you haven't checked it out, you should!  Her writing and sense of humor dealing with this maddening disease are amazing.

Monday, 12 March 2012

No Need For Padded Walls: Staying Sane With Chronic Illness

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.

 

So how the heck do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:

From Battling the Grinch, to Battling the Bulge; Cooking Healthy for a Month

This is going to seem really tame and maybe boring after the excitement of the last week or two with the "Battle of the Grinch" as I've come to call it. By the way,  Dr. Levine (who coined the term Grinch Syndrome) wrote a response to the excellent article on About.com about POTS and the Grinch controversy, featured here.   Levine danced around the issues, and you can see my thoughts in the first comment listed if you care to.

From "Battle of the Grinch" to "Battle of the Bulge," and I do like a dramatic transition - I have been struggling with blood sugar swings, and eating out of a cooler of pre-made/pre-packaged food daily that my husband kindly puts together for me (I can't sit up long enough to make food or last long enough in the kitchen to prepare anything).  Add to that being gluten intolerant, having random anaphylactic reactions to foods/smells (possible MCAD), and you have a recipe for linited and fearful eating habits. Not to mention fat thighs and a post baby belly that looks like my daughter could still live in there at 6 months old.  My son actually told me I have a big butt tonight.  He was being silly, but kids don't lie!  Talk about a reality check.

The ABC News Aftermath; Junk Reporting and THE GRINCH Making Life Harder for POTS Patients

As many of you in the Dysautonomia community know, ABC recently aired a segment on World News Tonight with Diane Sawyer about POTS (on 2/29/12).  Leading up to that broadcast, a series of events took place that amazed me and reinvigorated my faith in the power of patients as a community.  We mobilized.  We complained. We used every connection we could.  And it worked - sort of.

Here is a breakdown of the history of, and problem with "The Grinch Syndrome", along with a timeline of what took place over the last week.  I also include a call to action (once again) from our amazing POTS warriors to force change that is long overdue.  

THE GRINCH PROBLEM

There is a researcher out of Texas named Dr. Levine who proposed that POTS be renamed The Grinch Syndrome.  He did this based on his study that was published in the Journal of American College of Cardiology in 2010 called Cardiac Origins Of The Postural Orthostatic Tachycardia Syndrome. The presumptuous name of the study is the first clue as to how preposterous this "study" and its "conclusions" are.  Levine and his researchers claim that, "These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective non-drug therapy for POTS patients."