Thursday, September 17, 2015

New York Times Well: Postural Orthostatic Tachycardia Syndrome

One of the Sjogren's message boards that I frequent has had a very interesting discussion thread about Postural Orthostatic Tachycardia Syndrome (POTS), a syndrome that affects the autonomic cardiovascular system. It's of interest to us with Sjogren's and other autoimmune diseases since it can accompany Sjogren's syndrome. Thanks to Sarah Schafer, MD for providing information about POTS and the link to this article from the NYT Well blog. This from Dr. Schafer:
.....[POTS] It is significant that this problem is often overlooked or by rheumatologists. Usually because they are not trained to recognize it. Cardiovascular  dysautonomias  may greatly contribute to fatigue. One of the most disabling of these is POTS, which is often overlooked until it becomes severe.  Postural tachycardia syndrome is not simple orthostatic hypotension (stand up and get light headed).  It is a pooling of the blood in the lower extremities, causing dizziness, rapid heart rate, and sometimes even fainting.  There are good management tools, so it is important to get it diagnosed.   You need to find a doc familiar with it. It is a fairly common condition , yet many docs not trained to recognize. 
I had it mildly for years but not diagnosed until it was severe enough that I could not stand for even 5 minutes. There is a great NYT article in the health section about this..[found here]. 
...Sjogren’s is the # 1 autoimmune disease associated with POTS.   It is also seen frequently in teenagers, and affects girls more often than boys. (Bolding mine.)
Here's an excerpt from the NYT Well piece, but head over there to read it all:

Think Like a Doctor: Swept Off Her Feet Solved

FEBRUARY 12, 2015
On Wednesday, we challenged Well readers to take on the case of a 21-year-old college student with chronic headaches who suddenly became too dizzy to walk. She had a medical history that was complicated by back surgery and a subsequent infection, and chronic headaches after a car accident. More than 300 of you wrote in with suggested diagnoses, but only a handful of you noticed the clue that led the medical student who saw the patient to the right answer. 
The cause of the young woman’s dizziness was… 
Postural tachycardia syndrome, or POTS. 
The first reader to make this diagnosis was Theresa Baker, a retired bookkeeper and mother from Philomath, Ore. She said she immediately recognized the disorder because her young niece has suffered from it for over a decade. Her episodes of dizziness and fainting had started when she was just 13. Well done, Ms. Baker! Continue reading here.

1 comment:

Nicole said...

Great poster! :D

Dr. Schafer helped me recognize my POTS and I am feeling somewhat better with lifestyle modifications. Still looking for a medication that works for me.

Looking into the cause of my POTS, it appears that I do not have small fiber neuropathy, which the way that Sjogren's is thought by some to cause POTS. I think that mine is more of a genetic thing triggered by immune activation.

Research is still early days so it will be interesting to see what we learn about it in coming years. (On the other hand, my dad said that when he was in med school in the 60s that one of his professors said that that was going to be the age of the autonomic nervous system...)