The Patient's Voice

Views expressed in The Patient's Voice are not necessarily those of the Dysautonomia Information Network or its members.

Share your experiences in The Patient's Voice!

The Patient's Voice is a newsletter column where patients can express themselves while writing about experiences relating to dysautonomia - both positive and negative. It is a place to share medical experiences, suggestions, short stories and poetry, etc. Send contributions to: staff@dinet.org.

Factor V Leiden
by Beth

My 16 daughter has fairly mild POTS. Her symptoms developed over the course of several years during middle school and high school. Her doctor is the local POTS expert and he has had trouble stabilizing her on medication. The best we could get after a year of playing with meds was 12 hours per day of good energy and 12 hours a day of coma-like sleep. Significant exercise or significant lack of sleep left her feeling like she was hit by a truck.

In May, my daughter developed a pulmonary embolism and huge blood clot (over 12 inches) in her thigh and vena cava. It turns out she has a genetic super clotting gene (Factor V Leiden) and her blood has probably been a bit on the thick side all her life. She was put on birth control to see if it would ease the POTS symptoms and that caused the clot. On the crisis day, both hospital labs (she was transferred to Childrens from a local hospital) found they couldn't even measure the clotting time of her blood because it was already clotted when it got to the lab.

To make a very long story short, they put her on blood thinners and her POTS symptoms are better than they have been in years. My theory is that her blood was too thick to circulate properly and her body was trying to compensate by initiating tachycardia, etc . As she got taller, it just became all the harder for her body to circulate blood. (Many POTS symptoms are similar as those for sickle cell anemia where the red blood cells are shaped like sickles and clog up the capillaries.)

During the past two weeks, she has been camping and traveling up to 15 hours by car in 90 degree heat with little sleep and she is FINE!! Just three months ago any one of these factors would have sent her off the deep end. I think the blood thinners are responsible. This makes sense because her favorite medicine for her POTS was to take lots of Motrin, which thins your blood. It made her less tired and able to tolerate light exercise. We used to joke that her POTS was really a lack of Motrin. We call it a "lack of Vitamin M." Our cardiologist says many POTS patients are Motrin junkies.

Please be aware that the Factor V Leiden super clotting gene is actually quite common. About 4-5% of the entire Caucasian population has it. If your relatives are from Northern Europe your chances increase - up to 15% of Swedes have the gene. It is much rarer in non-Caucasions. This super-clotting gene does NOT mix well with hormones or the pill. It is very dangerous to put a woman on hormones without asking a lot of questions about whether she has relatives who have had blood clots, strokes, heart attacks at a young age, etc. If there is any family history, the woman should consider being tested for clotting problems before taking the pill.

POTS Masking Asthma
by Camilla Curnow

In addition to POTS, I have been having severe fatigue on exertion for four years. I attributed this to exercise intolerance, which is a hallmark feature for many people with POTS.

Fortunately, one of the doctors where I work suggested I get a full pulmonary workup, and I was diagnosed with adult-onset asthma.

On inhalers and one over the counter medicine, I am more functional than I have been in years. The POTS isn't gone, but one of the main sources of my diminished quality of life is now being managed! I am even exercising again!

My asthma symptoms came on gradually and insidiously; I never had an acute attack requiring ER visit or anything like that. I just got very winded anytime I had to go up any kind of incline…no matter how slight.

I just want anyone out there with POTS to know - if you have exercise intolerance that causes any change in breathing, be sure it's not ASTHMA!!

As I so much love the Cicely Mary Barker's Flower Fairies, I've tried to create one myself for all of you to enjoy! By far not as beautiful as the original one of course, it gave me a lot of pleasure though!!!

I have this beautiful and lovely little book Flower Fairies of the Summer (and try to collect more of them), achieved by Frederick Warne and published by the Penguin Group, which contains reproductions of Cicely Mary Barker's artwork. The heather in the painting is bell heather, or heath; it is different from the common heather which is also called ling.

"Cicely Mary Barker was born in Croydon, South of London in 1895 and died in 1973. She led a quiet life, and was always happiest with a sketchbook in hand. Owing to ill health she was educated at home and largely taught herself to draw and paint. Despite her lack of formal artistic training, her natural talent was commercially recognised when she was only 15 with the publication of a set of postcards. But it was her Flower Fairies books, the first of which was published in 1923, which brought her international acclaim as an artist. The delicate charm of her illustrations, coupled with her meticulous botanical accuracy, has captivated both children and adults alike for nearly 70 years, and the books have become classics of children's literature."

This text comes from Flower Fairies of the Summer, published by:

Frederick Warne

Penguin Books LTD/ Penguin Books USA Inc.

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