What is POTS - Really, what is it? REALLY?

Flower POTS

After compiling the big long post that will be broken into a few parts about why you need to find your POTS cause, I wanted to discuss what POTS really is.  

Copper POTS

There is so much confusion and debate between doctors, and amongst people on the support groups and blogs.  

This dude smokes POT(S)

So what in the world is POTS? 

You can print this out and bring it to your doctor if they are unaware, or share with anyone who may be confused on the subject.  I would recommend only printing what is between the lines, not my silly pictures.
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The most recent consensus definition of POTS by most of the lead researchers in the field is this:

"4.1. Definition: The postural tachycardia syndrome (POTS) is characterized by a sustained heart rate increment of ≥ 30 beats/min within 10 min of standing or head-up tilt in the absence of orthostatic hypotension. The standing heart rate for all subjects is often ≥ 120 beats/min. These criteria may not be applicable for individuals with low resting heart rates. For individuals aged 12–19 years the required increment is at least 40 beats/min. The orthostatic tachycardia may be accompanied by symptoms of cerebral hypoperfusion and autonomic overactivity that are relieved by recumbency.

4.2. Pathophysiology: The etiology and pathophysiology of POTS are unknown but are likely to be heterogeneous. The syndrome is associated with  deconditioning, recent viral illness, chronic fatigue syndrome and a limited or restricted autonomic neuropathy. The differential diagnosis includes conditions that cause tachycardia, such as thyrotoxicosis, inappropriate sinus tachycardia and other
cardiac rhythm abnormalities, pheochromocytoma, hypoadrenalism, anxiety, dehydration, and medications (e.g., vasodilators, diuretics, and ß-agonists).

4.3. Epidemiology and clinical features: The prevalence of POTS is not known. The syndrome is more common in women. The orthostatic symptoms consist of lightheadedness, visual blurring or tunnel vision, palpitations, tremulousness, and weakness (especially of the legs). Other symptoms include fatigue, exercise intolerance, hyperventilation, shortness of breath, anxiety, chest pain, nausea, acral coldness or pain, concentration difficulties and headaches. On clinical examination, in addition to the heart rate increment, pulse pressure may be reduced and acral coldness may be present. Continued standing may lead to venous prominence, cyanosis and foot swelling. A hyperadrenergic state is present in some patients who have a resting tachycardia, sweating, and tremulousness."

Source: Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Freeman R et al. , Auton Neurosci. 2011 Apr 26;161(1-2):46-8. Epub 2011 Mar 9. 


Here is the complete list of contributors: Roy Freeman, Wouter Wieling, Felicia B. Axelrod, David G. Benditt, Eduardo Benarroch, Italo Biaggioni, William P. Cheshire, Thomas Chelimsky, Pietro Cortelli, Christopher H. Gibbons, David S. Goldstein, Roger Hainsworth, Max J. Hilz, Giris Jacob, Horacio Kaufmann, Jens Jordan, Lewis A. Lipsitz,  Benjamin D. Levine, Phillip A. Low, Christopher Mathias, Satish R. Raj, David Robertson, Paola Sandroni, Irwin J. Schatz, Ron Schondorf, Julian M. Stewart, J. Gert van Dijk


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So - that is only what all these various researchers with all the differing definitions of POTS agreed upon.   There are a few big names missing, like Dr.'s Grubb and Mathias, but this seems to be some sort of effort to come to an understanding of the minimum requirements for a POTS diagnosis, and to get the point across that blood pressure (BP) changes are not a requirement, and even includes the statement that POTS only occurs in the absence of a blood pressure drop.  This still confuses me, because my understanding was that you can have POTS and orthostatic hypotension or NMS.  I'm going to hypothesize that they are finding in patients with the drop in BP, it is a sign of something else going on, and doctors need to dig deeper than the typical causes of POTS.  Or that "everyday doctors" that don't specialize in dysautonomia were ruling out POTS without a drop in BP.  I plan to email a few of these doctors for clarification, hopefully someone will respond!

The majority of POTS patients: good looking, young women. Who are told they have anxiety. 

Summary: 


POTS is a syndrome (a collection of symptoms, not a disease).  If someone's heart rate increases at least 30 beats per minute (BPM) when standing, many times above 120 BPM, within 10 minutes, that is POTS.  Some of the symptoms are relieved once laying down, but many are chronic and mimic other conditions.  It has many causes, and affects mostly women.  Certain dangerous conditions that mimic POTS or coincide with POTS need to be ruled out.

POTS does not include, by defintion, any changes in blood pressure, those are separate disorders.  In fact, in the consensus statement, they say that you only have POTS in the absence of a drop in blood pressure.  So if your doctor tries to tell you that you are fine and it's just anxiety because your blood pressure didn't drop, or because you are a young, healthy looking woman, show them the above statement, along with this statement about the difference between anxiety and POTS (and maybe get a new doc!).  

See the post regarding Syncope and Neurally Mediated Syncope for more details on disorders related to dropping blood pressure and fainting.




As a side note - this was the first listing in Google when I typed in POTS, of course from that most reliable of sources, Wikipedia (insert sarcasm):

POTS

From Wikipedia, the free encyclopedia

Jump to: navigation, search

Look up pots in Wiktionary, the free dictionary.

POTS may refer to:

• Plain old telephone service, basic wireline telecommunication connection
  • POTS codec, a digital audio device
  • DSL filter, also known as a POTS filter
• Postural orthostatic tachycardia syndrome, a medical condition
• Poverty of the stimulus, an argument in favor of innate grammar
• Protector of the Small, a series of fantasy novels
• The Path of the Shell, an expansion pack of the computer game Uru: Ages Beyond Myst
• Pacific Organized Track System, airways between Japan/Southeast Asia and the US mainland
• Plain old television service, or over-the-air TV

Oh, and this guy IS SO NOT POTS:

Also, here are some POTSies, which came up in my Google search as well:

And if you haven't seen it, here is a PG-13 video I made about the ER experience for a POTSy called "What the hell is POTS?":
 

Until next time POTSy dudes and dudettes.
Claire

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.

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."