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.
READ MORE HERE
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.
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
