For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Day 39

I have not been dizzy at all yet today.

Highschool Swimmer with POTS - from Mar 5 2010

H.S. SWIMMING: Haverford’s Gavin-Hanner glad to return

HAVERFORD — Matt Stewart hosted an information session, one all high school coaches conduct, prior to this season.  As the Haverford swim team filed in, the Fords coach spotted a familiar, but unexpected face.  Maggie Gavin-Hanner was among the assembly.  “When she walked into the meeting, I thought, ‘This team just got a lot better,’” Stewart said.

An All-Delco and a PIAA qualifier as a freshman, Gavin-Hanner left Haverford and its swim team midway through her sophomore year due to illness. She did not return to either until this fall, prior to her senior year.  So when Gavin-Hanner strolled into the preseason meeting, no one knew what to expect … including Gavin-Hanner. She wasn’t there to match her earlier success; those goals remain on hold.

Simply, she wanted to regain a portion of her life.  “It was good to be part of the team again,” said Gavin-Hanner, who will swim three events this weekend at the District One Swimming Championships at La Salle University. “It wasn’t even (about) swimming fast for me. It was just being a part of the team and being able to show up and interact with people.

“It’s little things that you miss. As disgusting as it sounds, you smell like chlorine all the time. When it was gone, it felt weird. (Also), looking up and having people stare down at you, dumb things like that.”

During her time away from school and the team, Gavin-Hanner was diagnosed with Postural Orthostatic Tachycardia Syndrome, a condition in which the body fails to perform tasks necessary to neutralize gravity. It leads to variances in blood pressure and a rapid heartbeat for extended periods.

Information on POTS and OI for Physicians and Dentists

Before I write a post for this blog I normally look around the web for interesting posts, news articles or research papers that may be of interest.  Today I found a "Review of postural tachycardia syndrome" published by the European Society of Cardiology.  This eight-page document provides a general overview of POTS; with references to previous research and studies, sections on clinical features, diagnostic evaluation and treatments.

Accepted for publication in 2008, the review obviously does not contain the most recent research available but it does contain a fairly comprehensive list of some of the more significant papers on postural orthostatic tachycardia, vasovagal syncope, orthostatic intolerance and chronic fatigue syndrome.   It could be a helpful tool for those patients diagnosed with POTS or OI or for those who suspect they have POTS or OI and who need some backup information to give to their physicians.

The Review on POTS document can be found HERE

One particular citation to a paper by JM Stewart led me to this document offering advice to dentists treating patients with POTS or OI!  (I have had to ask my dentist not to use certain anesthetics containing epinephrine as they make my heart rate go so fast I think the organ will burst out my chest just like that scene from the movie Alien)  I will be giving the document to my dentist FOR SURE.

The only reference in the Review to exercise as a possible treatment for orthostatic intolerance associated with POTS is a citation of a 2005 study by Winker et al:
An exercise programme with regular aerobic exercise and lower limb resistance training may aid blood volume expansion and reverse deconditioning. In a randomized controlled trial, endurance exercise training (3 months jogging programme, increasing by 10 min duration each month, from 30 to 50 min, 3 times/week) improved symptoms of orthostatic intolerance in 31 POTS patients.
I believe Dr. Levine's research paper now accepted for publication by the American Journal of Cardiology will offer further evidence that specific exercises combined with blood volume expansion can be a successful treatment option for orthostatic intolerance.  WooHoo!!

You are not alone!

I started this blog just over a month ago to document my progress on this new treatment protocol from Dr B. Levine of Texas.  Writing this blog has prompted me to surf around on the internet looking for news and for new research on dysautonomia. I have found MANY people who are looking for help, for information, for confirmation that what they are experiencing is real.

Living with POTS or OI can be isolating, infuriating, discouraging and at times, desperate.   The condition is not well understood by the public or by the physician community.  People can live with symptoms for years without a diagnosis.  Physicians can be unsupportive; doubting a person's complaints.  Patients can be left wondering if their pain, their fatigue and other symptoms are all in their heads.

Some people are treated like pharmaceutical guinea pigs and are given prescription after prescription with little understanding as to what will actually works or the consequences of taking the drugs.  Some people give up hope and decide to live with their condition; disabled and suffering.

For those of you who are on the hunt for answers here is my reassurance to you:

The condition is real.  There are many people who suffer like you.  There are doctors who understand.  There are proven ways you can help yourself to feel better.  You are not alone.