POTS victim has hope despite limited activity

Local Life November 21, 2012 1 Comment

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.

A typical day for Martin begins at 6 a.m. Martin’s husband, Christian, brings her a large glass of tomato juice, which is packed full of sodium, and a large glass of water.

“I have to drink this (tomato juice and water) before I even attempt to sit up,” Martin wrote.

Once she is able to sit up, she drinks coffee to raise her blood pressure and then uses her wheelchair or Rollator to get to the bathroom. Her husband leaves for work and drops their son off at school after he packs a cooler full of food and baby supplies next to her bed. Martin cares for her daughter until 10 a.m. when her mother comes over to help.

“If I’m having a good day, I can take my daughter into her room and lay on the floor and play with her,” Martin said.

But, most of the time, they read, play and do other activities in Martin’s bed. While Martin does try to get up with her Rollator as much as possible, most of her time is spent in bed or reclining in a wheelchair.

Even the simplest activities, like making coffee or taking a shower while lying in the tub, force her to spend an hour or two recovering. Martin is no longer able to climb the stairs to tuck Lukas into bed.

Traveling is difficult, if not impossible. When she does travel for doctors appointments, it has to be by medical transport.

“I only get to leave the house to do medical trips and the occasional unfortunate trip to the ER or – like now – I am admitted and have been transferred to an inpatient hospital physical medical rehab,” Martin wrote in her email. “I get very sick, with both my blood pressure and heart rate changing drastically in the car.”

When Martin is not enjoying time with her family, she is working on her website, Dysautonomia SOS, and writing on her blog, STOP POTS.

“I try to use my experience to help other people dealing with this find resources and support,” Martin wrote.

Still Martin considers herself blessed.

“POTS is heartbreaking,” she said. “I can’t imagine being a kid having to deal with this.”

Martin said while there is no cure and no longterm studies on POTS, many of the symptoms can be treated or controlled for some people. Right now, Martin calls this period in her life “the dark times.”

“My POTS has waxed and waned through the years with varying intensity,” Martin said, who has taught high school students and owned her own floral business Bella Flora. “I like to balance out how terrible it is with how much hope there is, because 80 percent of teenagers will outgrow POTS.”

Martin added that there is a lot more support and resources available to people thanks to the Internet. She said one of the problems is that people are often misdiagnosed or told “it’s all in your head.”

“One doctor told me it was anxiety, and ‘I looked healthy,’” she said in an earlier telephone interview. “What exactly does sick look like?”

Martin said another problem is that there are a lot of myths about POTS on the Internet.

“There is no magic cure for POTS,” she said. “But, if you can find the underlying cause, like Lyme disease, then you can treat it. Everyone’s body is different, but, there is hope. The Internet has become a great resource. The public and medical professionals are becoming more informed. POTS makes me appreciate the little things in life like standing and taking a shower without fainting.”

For more information about POTS go to:

http://www.ndrf.org/

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

http://podcasts.mayoclinic.org/2008/04/23/postural-orthostatic-tachycardia-syndrome-pots/

http://dinet.org/

http://stoppotsvirginia.blogspot.com/

Part 1http://chestnuthilllocal.com/blog/2012/11/13/is-it-depression-anxiety-or-pots-the-first-article-of-a-two-part-series/

Want to support the Local? Join the Chestnut Hill Community Association. Membership helps fund what we do. Join today.

  • http://www.facebook.com/people/Steven-K-Carter/1061176532 Steven K. Carter

    I pray that the cause for this debilitating disease will be found. I often wonder what may be at the bottom of this type of affliction. Is it something about how we live in these supposed modern times? More research needs to be conducted now. My heart and prayers go out to all who are affected and especially to Claire, whom I know.