Showing posts with label Humor. Show all posts
Showing posts with label Humor. Show all posts

Thursday, June 14, 2012

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
POTS may refer to:
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

Saturday, April 7, 2012

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.

Tuesday, March 13, 2012

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:



Thursday, March 8, 2012

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.

Sunday, February 12, 2012

Bye Bye Bella Flora: The Dysautonomia Dementors and POTS Patronus

From my personal blog:

Bye Bye Bella Flora: The Dysautonomia Dementors and POTS Patronus:

Sunday, February 12, 2012


The Dysautonomia Dementors and POTS Patronus

I love Harry Potter.  I love the books, I love the movies, I love the brilliant world created by JK Rowling.

My life right now is pretty consumed by POTS and Dysautonomia, so I find myself making comparisons and analogies everywhere I look.  Which is actually not many places, considering I am home bound at this point - but does involve lots of movies, online stuff (no porn of course- I swear!), and books.

So when I last watched Harry Potter and the Prisoner of Azkaban (while in the hospital), which is when we first see the Dementors, I burst into tears.  I saw that dark black ghostly scary looking thing sucking the life out of Harry and them him passing out with the screaming noises in the background - and all I could think of was how that was how I felt day in and day out.  That was at the height of my "dark times", but I think many people struggling with dysautonomia and other life force/energy-sucking diseases can relate. POTS, Dysautonomias, CFS/ME, Fibro, Lupus, people going through Chemo, RA, any of the "spoonie" illnesses - we all struggle with days when the Dementors swoop in and gobble up every last bit of energy, happiness, and the ability to move and function.


Wednesday, January 18, 2012

Living with Bob (Dysautonomia): The Dorothy Shoe Project

Get involved in something fun!  This is from Rusty Hoe, whose blog Living With Bob is amazing.

Living with Bob (Dysautonomia): The Dorothy Shoe Project:

The Dorothy Shoe Project


Since my last post I've had a lot of time to think about what I want to do this year. Making sweeping statements about stepping back from a focus on illness to find a balance in my life are all well and good. But what exactly does that look like and what does it mean for the year ahead? This is exactly what I was contemplating at 3am the other night. Good old insomnia gives you a lot of thinking time. Not that all the thoughts are coherent, and many may involve elaborate plans of how to dispose of Bob's body should I ever manage to take him out, and perhaps others were about hot shirtless movie stars and back rubs. However, every now and then, you have an epiphany.

Monday, January 16, 2012

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness
(From butyoudontlooksick.com)
Sometimes you just gotta have a sense of humor!

The top ten worst suggestions commonly given to someone with a chronic illness:

1)Have you tried holistic options? (many. I’ll bring it back up with my doctor on my next visit, thanks.)

2) Could it be your stress? (My opinion is, it is my illness. I’ll bring it up with my doctor though, thanks.)

3) Could it have to do with the altitude? (I’ll bring it up with my doctor…thanks.)

4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I’ll bring it up with my doctor. thank you.)

5) Have you thought about being in a trial study? (I’ll ask my doctor. thanks?)

6) WOW. If I were you, I don’t know what I would do. I might just kill myself. (Thanks?)

7) Have they found what is causing the problem? (no. my doctor is an idiot. I’ll remind him, thanks!)
8) Have you tried hypnosis? (I’m still sick, but when the phone rings I bark like a dog.)

9) Have you googled your illness? (….no! thanks!)

10 Have you ever thought you were getting sick because you haven’t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on…..gee I lost the web site. but it’s true! I heard it from Sally’s cousin’s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can’t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!

Article written by Amy-Beth Maran , © 2007 butyoudontlooksick.com