Sunday, January 19, 2014

Found My POTS Cause. Probably. But Finally.

This is going to be a long one, just warning you. It only took 11 years, but we have finally found what is most likely causing my POTS. *highkick!*

I have not written on here in a LOOOOONG time. Like really written. I just haven't had it in me. Most of you that have read through this blog know that my goal was to make sense of this POTS and dysautonomia junk, and encourage folks to find their cause - because 90% of POTS is secondary, and frankly, most doctors just brush it off as no big deal. There are only band-aide medications, you can't really get well unless the cause is found if you happen to fairly debilitated by it. And even then there is no guarantee - but SOMETHING is causing your POTS, and if it's someting serious, YOU NEED TO KNOW.

What's ironic about this timing is that after having a port removed the day before Thanksgiving
because it had gone horribly, terribly wrong (clots, nerve damage, clogged, blah blah blah, etc...), I decided to take a break. I rescheduled all my appointments well into 2014 to take a few months off, because I AM TIRED OF THIS CRAP. 2012 and 2013 were spent on a wild goose chase after an admission where the inpatient physical therapy program actually discharged me, citing that I obviously had an underlying medical condition that needed addressed, and they were alarmed at my blood work.

Monday, September 30, 2013

Dysautonomia Awareness Month 2013

In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from Dysautonomia SOS you can share to spread the word:

Sized for Facebook and Instagram.

General flier.

Sized to be a profile pic on Facebook.

I love all my POTSies :)

Humor is the best weapon sometimes!

See? Humor. Win.

This is sized to be a Facebook header.
Happy October!!!! Let's spread the word homies!

Wednesday, September 11, 2013


First trip out in the new power chair.
I wrote this a little over a year ago and nothing has changed in my opinion of ditching the term "invisible illness". When I see your pictures - I see you are ill. If you are trying to "pretend" to look normal, you can't expect anyone to know you are sick, and that is fine. BUT- it's time to put the shame aside, start talking more, and educate people about what's wrong. Ditch the stigma. It starts with us. If we cling to this term, it continues to keep those illnesses invisible. And if you need to hide your illness (for work, kids, etc...) don't expect people will magically know you are sick. You can read more about my thoughts on this below.

Tuesday, April 16, 2013

Taking a break...

Peace out homies (for a bit)
As you may have noticed, have not been posting here much. This has never been a narative blog, I've tried to keep it science based. That takes a lot of work, and for now, my limited energy and time spent of that type of writing will be devoted to Dysautonomia SOS.

Dysautonomia SOS is a nonprofit, with a board of directors, medical advosors, the works! I feel like I can affect more change via that platform at this point. My health has been declining unfortunately, with no treatment successes beyond IV fluids, so I have to pick and choose where my spoons go.

I'm going to leave STOP POTS up as a resource, BUT WILL NOT ANSWERING EMAIL. If you need support, please head to the Dysautonomia SOS page and contact via that website, or look through the many resources there. Much of what is on this blog (especially the "Find your POTS Cause stuff) is being formally rewritten for the nonprofit and will be up in the coming months.

Thank you for understanding! I hope this page continues to be of help to others!

Friday, January 18, 2013

Anniversaries, POTS Perspectives, Suggestions and Such

I have not written a post in a long time, since we have been furiously working on the Dysautonomia SOS website.  I also have been doing a few "normal" things and living life a bit.

BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first POTS episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.

So ten years. Did I think this would be going on for a decade? NOPE. But it has.

Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our Advisory Committee, when diagnosed, patients usually hear one of three things:

"Oh, POTS is no big deal, you'll grow out of it"


"I have no clue how to treat this, NEXT"


"It's just anxiety, take some Zoloft"

I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.

And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:

Monday, December 3, 2012

Tuesday, November 27, 2012

Find Others! Join The Dysautonomia Social Media Directory!

Let’s connect online! Add yourself to our interactive map and find others online and in your area. You can upload pictures, online contact info, blogs, websites, and more!

***Under “Additions” menu, click on either the simple or detailed add form. You can select to be added as a patient, spouse, parent, or family/friend.

Friday, November 23, 2012

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

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.

Here is Part 2 (featuring me!): 

POTS victim has hope despite limited activity

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.

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!

Friday, October 26, 2012

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.

Sunday, October 21, 2012

Join the Social Media Dysautonomia Directory!

Hey folks!  Wondering where all those people are online that have dysautonomia? It can feel pretty lonely having a weird condition that no one has heard of, but supposedly a bunch of people actually have! We just have to find each other!

We created a directory you can register for, and include your various social media contact names and handles. You can include as much or as little as you like. We are dividing it up based on location. There will be a page in the new website devoted to this directory.

One of the goals of Dysautonomia SOS (and this blog) is to connect people, so they can share local resources and support. The online community can be a great resource for finding others.

To register, you can click THIS LINK, or fill out the form below:

Subscribe to our Social Media Dysautonomia Directory:

Welcome to the Social Media Dysautonomia Directory! Provide as much or as little info as you like, and find others online that deal with dysautonomia. We will not send emails or contact you with the info provided, this directory serves as a way to connect with people and find support online. As always, be careful to only list info you are comfortable having displayed publicly, and we are not responsible for any interaction on social media taking place. You can remove yourself from the directory anytime.


* indicates required


The Dysautonomia SOS website will be up and running in the next week! Blog posts will resume after that, I have been spending all my time/energy on the nonprofit website, but STOP POTS will remain active and full of the opinions I can't share on an official organization website. 

Oh, and the TWEET-A-THON is next weekend! DINET is on board as well, we are very excited to get #dysautonomia trending on Twitter! Here is a flier you can share where ever you want:


Love to you all, and thank you for the continued support!