POTS in the news!

Recently, there was a two part series about POTS that was very well written, and included the stories of the son of one of Dysautonomia SOS's volunteer's, and myself!

Here is a link to Part 1, which includes great info about POTS, and the story of John, a teen battling POTS with an amazing attitude:

Is it depression, anxiety or POTS? The first article of a two-part series

Local Life November 13, 2012 4 Comments and 1 Reaction

John Point

by Sue Ann Rybak
John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court.
But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, headaches.
“John was on the cusp of turning 13 and had really started to grow a bunch,” Janet Point, his mother said.
At first his parents and the doctors thought he had mononucleosis. But after a battery of tests, including CAT scans, an electrocardiogram (EKG) and allergy tests, and a heavy dose of antibiotics, the doctors could find nothing wrong with him.
“Somewhere around the third or fourth test for mono, the doctor said, ‘Well maybe he’s just making this up,’” Janet said. “I thought, ‘I don’t think he has invented this.’”
“You just couldn’t get John out of bed in the morning using proper or improper motivational techniques,” said Steve Point, his father. “Yelling at him and dragging him out of bed didn’t work. But, he didn’t seem like he was so sick that he couldn’t get out of bed.”
Finally, desperate to find an answer, John’s Dad sent out emails to members of the Chestnut Hill Sports Club.
“There is a giant email address list that goes around and there are a number of physicians on the list,” Steve said. “So, I thought maybe someone can recommend a doctor at CHOP. (Children’s Hospital of Philadelphia), who specializes in weird diseases.”
Steve said someone recommended Dr. Mark Magnusson at CHOP, and he performed a “tilt-table test,” which is one of the techniques for detecting POTS (postural orthostatic tachycardia syndrome). During a tilt table test, a patient lies on a table that moves from a horizontal to a vertical position. Measurements of heart rate and blood pressure are taken while lying flat and then again at intervals while tilted upright. The optimal duration of tilt testing in patients suspected of having POTS is 40 minutes or until they faint, at which point the test is concluded.
It was February 2010 when Magnusson diagnosed John with POTS.
According to the National Institute of Neurological Disorders and Stroke, POTS is a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting accompanied by a rapid increase in heartbeat of more than 30 beats a minute, or a heart rate that exceeds 120 beats a minute, within 10 minutes of rising.
READ MORE HERE

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

Local Life November 21, 2012 0 Comments and 1 Reaction

Claire Martin with her baby girl, Gabriella.

by Sue Ann Ryback
(The second of two articles)
Claire Martin, 34, founder of Dysautonomia SOS: Searching Out Solutions, knows first-hand the obstacles and challenges of living with POTS (postural orthostatic tachycardia syndrome).
The mother of two young children, Lukas, 4, and Gabriella, 14-months, Martin had her first POTS episode at 24 while studying marine biology in graduate school.
“I was setting up an underwater research site in the Keys,” Martin wrote in an email during her twelfth day in the hospital on Wednesday, Oct. 24, “when out of nowhere, I had an extreme bout of tachycardia and felt like I was going to faint for the first time.”
Martin’s primary symptoms at first were bouts of tachycardia, lightheadedness, and fainting.
In 2003, Martin was forced to drop out of graduate school because her symptoms increased in severity and frequency.
Martin, who was studying sponge ecology and growth rate studies in the Keys said, “I was having trouble functioning, and I definitely couldn’t scuba dive anymore to continue my research.”
Martin, who now lives in Virginia Beach, Va., said she was a very active child, teenager and young adult. While she doesn’t know the exact cause of her POTS, she suspects it could have been the result of a spinal fusion in 1999. But, she didn’t develop POTS symptoms until years later.
READ MORE HERE

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We are very thankful to see POTS in the news, and especially for a reporter who takes the time to convey accurate information. While I don't see myself as a victim, more of a butt-kicker (so to speak), I am so grateful to have been featured in this!

I encourage you all to reach out to local newspapers! Dysautonomia SOS has a press guide that can help you have your loved one (or yourself) featured locally, and spread the word about POTS and Dysautonomia. This is a great tool for upcoming events, and to make this condition a household name. Contact us if you'd like help!

I'll be back writing more soon, we are in the final stages of editing the new website, which has been taking all of my energy. Love to you all!
Claire

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.

October Is Global Dysautonomia Awareness Month!

And of course we now have tee shirts!  In men, women, and kids styles:

Choose to be Chronically VISIBLE

Alrighty.  Time for an Op-ed.   It may tick some people off. 

I see much posting going on regarding INVISIBLE ILLNESS and spreading awareness by promoting the idea of an illness being invisible.  This term has always bothered me, as I have mentioned before on this blog.  It has the ring of victim/helplessness to me, and I tend to like things that are assertive, proponents for change, and action oriented.


I think the problem here is two fold:
1.  There is no invisible illness, JUST IGNORANCE.  What illness is truly visible?  There are very few compared to vast majority of illnesses, diseases, and conditions that people suffer in silence and try to hide - or that do not cause them to look deformed or like the traditional notion of "ill."  And that traditional notion of illness is what needs to change. By continuing to use the term invisible illness, we are separating ourselves from other people that "look sick," and in my opinion, making the problem worse. 

2.  People find their identity in the "invisible illness" movement, and use it as something to hide behind.  NOT EVERYONE.  I know that is probably not most people's conscious intention.  Many are looking to find a way to spread awareness, which I commend.  But is this how any of us want to be known?  As invisible?  Is this the best way to spread awareness? 

What society sees are deformities and stereotypes.  Not illness.  They see something out of the ordinary and recognize something is "not right" with that person.  This actually has nothing to do with if they are "ill" in some cases.   Is an amputee ill?  Maybe.  Or maybe they are missing a leg, but otherwise are perfectly healthy, and do triathlons.  This is a problem with society, not with those of us who are chronically ill, and we need to address those stereotypes if anything is going to change.   We need to speak about our conditions by NAMING THEM, and being visible, not promoting an image that quite frankly can be a bit whiny sounding at times.

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....

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.

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!

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."

I am not a GRINCH!

ACTION ALERT-Tell ABC NEWS Not to Disrespect POTS Patients

Last night (2/28/12) ABC World News with Diane Sawyer did a segment on Cardiogenic Syncope. They showed a preview clip of tonight's segment with fainting astronauts, and we know that is going to be about POTS(Postural Orthostatic Tachycardia Syndrome).  Fellow POTSy (POTSGrrl) called ABC News tonight and spoke with the reporter who prepared the POTS/astronaut story.  Claire from STOP POTS called as well, and spoke with the reporters assistant.

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.

START A STOP POTS REGIONAL CHAPTER!

Are you looking to start a support group with resources in your area?

If you are serious about spreading the word, raising awareness, and helping compile data on doctors treating POTS in your area - contact me!

I will help you set up your own site, and use the information and content on here (which is copyrighted to STOP POTS) to get started.  I am also in the process of getting STOP POTS official Non-Profit status.

The main goal of having regional chapters is to provide links to local doctors, support materials relevant to your area, and possibly hosting or promoting local awareness events in your region.

We need to spread the word about POTS diagnosis, treatment, and support - and what better way to do that than to work TOGETHER?!?!


Email me (Claire) at stoppotsvirginia@gmail.com for more info and to start chatting about this.

I really believe the more local groups we can get going, the more doctors will have to learn about POTS, and we can reduce the diagnosis times, improve treatment options, and help others suffering from this illness.

Thanks!!!
-Claire

Decoding Hyperadrenergic POTS & How to Maintain a Functioning Lifestyle

***I am trying to find out what website this came from so I can link to it, it's circulating on Facebook right now, if you know please contact me.  I love this breakdown of what hyperPOTS patients go through (I'm in the process of nailing down this diagnosis).  ENJOY! 

My interpretation of the hyper POTS state.

Decoding Hyperadrenergic POTS & How to Maintain a Functioning Lifestyle.

by Kimberly ResilientSwan Swanson on Saturday, February 4, 2012 at 1:05pm ·


Decoding for Chronic Conditions in General

What do I mean by decoding? Decoding is a term that I use to describe the process of learning about your condition/body, developing and then adhering to a long term treatment plan. Let me more fully explain this process in general and then apply it to the Hyperadrenergic POTS patient. The first step to decoding a particular chronic health condition is to begin listening to your body. People who are healthy never listen to their bodies, because they never had to before. Everything functioned as it should, so what’s there to pay attention to? You may be thinking, “What does a person need to listen for?” When a person begins to notice a particular symptom or groups of symptoms they need to become an investigator by making some observations about their condition. When do their symptoms begin? What triggers them? What makes them better? What makes them worse?

POTS is NOT a rare illness!

I keep hearing the phrase "rare" disease, "rare" illness, and "rare" disorder.  I am guilty of using this phrase myself.

But what is "rare"?  Not regarding steak, but in terms of an illness or disease?

The National Institutes of Health (NIH)  defines a rare disease or illness as:

"The prevalence of a rare disease is usually an estimate and may change over time. A rare (or orphan) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States. Certain diseases with 200,000 or more affected individuals may be included in this list if certain sub-populations of people who have the disease are equal to the prevalence standard for rare diseases."

Now lets look at POTS. 
Postural Orthostatic Tachycardia Syndrome is defined by Low et.al: 

An Open Letter to Doctors (Regarding the Anxiety Bias)

Dear Doctors:

I am a female.  I have an illness.  Because of many of your biases towards young women, women in general, and POTS (Postural Orthostatic Tachycardia Syndrome) sufferers, my illness was blamed on anxiety for many years.  This not only happens with my particular illness, but with many lesser known and rare illnesses.  I am not only speaking to you male doctors who are guilty of this, but the female doctors as well - who have been just as condescending and dismissive as their male counterparts.

My illness is categorized as a dysautonomia. My form of dysautonomia includes POTS (Postural Orthostatic Tachycardia Syndrome), and a few others that I am now finally being tested and treated for.  It has been an almost decade long journey, and because of this "anxiety bias", I am just now getting the correct testing and treatment.  I had to let my illness progress and be so sick that I was hospitalized for almost nine months and almost died for most doctors to take me seriously.   When I first came to you for help, I was experiencing REAL symptoms.  I have no history of anxiety, depression, or any mental health illnesses.  Though - even if I did, you still should have listened to me.

After the first few years of being told I had anxiety (even with a positive Tilt Table Test for POTS), I had read the medical journals and literature, and self diagnosed myself with dysautonomia.  I brought this information to my internist and he agreed with me.  He sent me on to find treatment from doctors he thought could help me.  Unfortunately, I was told bluntly, "If you really had dysautonomia, you would be dying the hospital," and , "you just have anxiety and panic attacks, " and - my favorite - "you are just going to have to learn to deal with being dizzy and your heart racing, it is just anxiety."  These are exact quotes, all from local Neurologists, who I have found to be notoriously unhelpful, degrading, cold, and unwilling to help find the cause or treatment for my symptoms.  I have seen 8 local neurologists, who have all either dismissed me, or have told me, "I don't want to deal with you, dysautonomia is too complex, and I don't know anything about it."  These things were said after I had a positive Tilt Table Test, the standard for diagnosing POTS.

Many of my daily symptoms are similar to those of anxiety.  Anxiety responses are controlled by the same nervous system that is malfunctioning in me.  This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

This may seem kind of self serving, but I thought it may help others to (subtly) pass on to family/friends. Everyone knows someone who is sick in some form or another - these are great tips from www.butyoudontlooksick.com!

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

36 Easy things that you can do to make the life of your chronically ill friend a bit better.

You do not need to spend a lot of money. You can be thoughtful in so many ways. The point is to do something, and do something today. I have listed below 36 easy ideas that anyone would appreciate. Sometimes it is hard for a patient to ask for help. Just do it! The hardest thing about chronic disease is that it is chronic. I had a friend who had a really bad flu and she received flowers that very week. With me – since I am sick all the time… I get nothing. Am I any less sick, sad, frustrated, lonely, or bored. NO, I need your love and support now more than ever. When everyone else forgets that I am still in this struggle with my illness….. please remember. It didn’t go away, I didn’t forget. I need you to be my friend.

The Spoon Theory written by Christine Miserandino

If you are struggling with family and friends understanding your illness and why you can't party like a rock star, or much less do many "normal" tasks, send them this! And join the #spoonie team on Twitter, a phrase resulting from this article.

The Spoon Theory written by Christine Miserandino