Saturday, May 26, 2012

"Dysautonomia", "POTS Syndrome", and Social Media

To quantify and assess the online Search Engine and social networking status of the key words 'dysautonomia', 'POTS Syndrome', and 'dysautonomia POTS Syndrome' and determine whether there is overlap or dilution of information.

Materials and Methods
An online perusal of Yahoo and Google Search Engines and You Tube videos was performed using key words 'dysautonomia', 'POTS',  'POTS Syndrome', and 'dysautonomia POTS syndrome'. The names of items in the drop-down menu, as well as the total listings in the Search were assessed. An evaluation of topics in all categories was performed.

In 2006, only a few dedicated blogs and YouTube (YT) sites existed for dysautonomia. If one Googled 'dysautonomia', less than 50 items appeared. On YT, there were also fewer than 15 Channels dedicated to dysautonomia or Postural Hypotensive Tachycardia Syndrome (POTS). There is a paucity of information available to show how dysautonomia and/or POTS Syndrome grew in awareness for the online community.  Since 'POTS' is classified as a subset of the major heading 'dysautonomia', it is unknown what the online relationship is between the two. This is important to quantify because many patients with POTS/dysautonomia are bed-ridden and social media are of important consequence to this patient subset.

Finally, medical information on dysautonomia and POTS is important because the diseases are frequently undiagnosed, and once the diagnosis is made, support groups or social networking appears to be important in educating and providing support to the patient population. Clinical signs and symptoms may vary and those with these diseases gravitate to online experiences in order to better cope with their illness. The importance of this social networking has not been described.

Key word Searches for 'dysautonomia' yielded similar results for 'dysautonomia'. Yahoo revealed 10 drop-down items: dysautonomia symptoms, dysautonomia syndrome, dysautonomia foundation, dysautonomia treatment, familial dysautonomia, mitral valve prolapse dysautonomia, dysautonomia in dogs, dysautonomia pots, dysautonomia information network, and dysautonomia and pregnancy. A Google Search showed the following websites: Dysautonomia, Wikipedia; Dysautonomia Information page; National Dysautonomia Research Foundation; Dysautonomia; Images for Dysautonomia; POTS place; All About Dysautonomia; Dysautonomia Foundation, Familial Dysautonomia; DysautonomiaMD: Beta Blockers and POTS/Dysautonomia;  Dysautonomia Center, Department of Neurology; Welcome, and Dysautonomia Youth Network of America. See Table for more information of Search Engines and YT sites in all categories.

On YT,  'd-y-s' showed the following the drop-down menu: dysautonomiamd and dysautonomiamd\. 'D-y-s-a' leads to dysautonomia and dysautonomia pots; 'd-y-s-a-u' leads to dysautonomia, dysautonomia pots, dysautonomia symptoms, dysautonomia awareness, dysautonomiamd and dysautonomia. The complete key word yielded the same results.

The acronym 'POTS' yielded a variety of Search subjects besides POTS Syndrome proper. For example, topics concerning pots and pans, the neti pot for nasal sinus problems, Paul Pots Nessun Dorma, crock pot videos, instructions on starting pots for seeds using newspaper, and smoking pot were listed. There were so many nonrelevant search websites that a relevant site was nonexistent.

A YT Search Engine for 'POTS' yielded 50 pages.  22 pages had no relevant posts.  28 pages had relevant posts as follows: 17 pages of these had 1 post; 4 pages had 2 posts; 3 pages had 3 posts, and 4 pages had 4 posts. 2 videos were repeated; 4 videos had both key words 'POTS' and 'dysautonomia', and 1 video had both key words 'POTS' and 'EDS'. EDS is an acronym for Ehlers-Danlos Syndrome.

Search Engine results on Yahoo and Google were similar for 'POTS Syndrome'. The Yahoo Search yielded pots syndrome, pots syndrome symptoms, pots syndrome treatment, pots syndrome specialist, pots syndrome mayo clinic, pots syndrome and pregnancy, pots syndrome support groups, pots syndrome prognosis, pots syndrome and diet, and living with pots syndrome forum.
The Google Search yielded the following items in the drop-down menu: pots syndrome, pots syndrome symptoms, pots syndrome emedicine, pots syndrome specialists, pots syndrome treatment mayo clinic, pots syndrome and pregnancy, pots syndrome diet, pots syndrome cleveland clinic, pots syndrome medications, and pots syndrome doctors.

A YT search of 'POTS Sy-' yielded 'pots syndrome', 'pots syndrome mayo clinic', pots symptoms, and 'living with pots syndrome'. 'POTS Syn-' yields  'pots syndrome', 'pots syndrome mayo clinic', 'living with pots syndrome'. All videos are relevant although 231 were repeated and 8 were nonrelevant.

A key word Yahoo Search on 'dysautonomia pots syndrome', showed a drop-down menu with dysautonomia pots syndrome.A Google Search of the same key words showed a drop-down menu with dysautonomia pots syndrome, dysautonomia pots symptoms, dysautonomia pots neurocardiogenic syndrome, and pots specialist dysautonomia. 

On YT, the two key words 'Dysautonomia' and 'POTS Syndrome' yielded no words in the drop-down menu, other than those for 'dysautonomia' as described above.  The same 4 videos were repeated 58 times, and 7 additional videos were repeated.

Key Word(s)
You Tube (%)
1,143/1,150 (99.4)
     47/   500 ( 9.4)
POTS Syndrome
   861/1,100 (78.3)
Dysautonomia POTS Syndrome
   992/1,100 (90.2)

Table. Relevance of Search to Key Word(s). For ‘dysautonomia’, ‘POTS Syndrome’, and ‘Dysautonomia Pots Syndrome’ key word Searches on Yahoo and Google, all websites were relevant to the Search. ‘POTS’ key word alone is severely nonrelevant for Searches. When Searching YT, the most relevant Search is for ‘dysautonomia’. The decrease percentage of relevant YT videos for the key words ‘POTS Syndrome’ arises primarily because of videos that are listed more than once. ‘POTS Syndrome’ vs. ‘Dysautonomia POTS Syndrome’ key words yields different videos for each of these two Searches. POTS = Postural Orthostatic Tachycardia Syndrome; YT = You Tube; N/A = Not Applicable.

For people with a rare or debilitating disease, social networking has blossomed as a way to grasp the diseases of dysautonomia and POTS.  There is controversy over whether either of these diseases are 'rare'; it could be that they are simply undiagnosed. We evaluated the main Search Engines Yahoo and Google, as well as the social media site You Tube, in order to assess and quantitate their relationship to diseases of the autonomic nervous system.

As described by Grubb, et al., POTS is diagnosed in a patient having syncope or near-syncope; the diagnosis can be made with the head-up tilt table (HUTT) if, upon standing after supine, the patient's heart rate increases more than 30 bpm or is over 120 bpm (1). The blood pressure may fall more than 20 mmHg systolic during standing; for hyperadrenergic POTS, the blood pressure may even increase. Some patients pass out during the HUTT due to decreased cerebral perfusion and a lack of cerebral blood flow.

The treatment of POTS and dysautonomia includes the use of compression stockings for venous pooling prophylaxis, abdominal binders for increasing left atrial venous return, midodrine alpha-agonist for peripheral vasoconstriction as used to prevent orthostatic hypotension after simulated spaceflight (2), fludrocortisone mineralocorticoid for volume expansion (3), a high-salt diet for fluid retention, liberal fluids for volume resuscitation, and possibly the use of beta-blockers or combined therapy with alpha- and beta-blocker pharmacologic treatment to decrease heart rate without a concomitant decrease in blood pressure, as well as serotonin-reuptake inhibitors (SSRIs).   Fluid resuscitation may require the continual use of a peripherally-inserted central catheter (PICC) line, an imbedded central line (i.e., a Hickman catheter), or regular trips to the Emergency Room for D5NS at 1 cc/kg/hr for 1-2 liters until the patient is no longer tachycardic upon standing.

Midodrine alpha-agonist therapy was first approved by the United Stated Food and Drug Administration in 1997, for the treatment of orthostatic hypotension in diabetes mellitus and Parkinson's Disease (2). One of the newest drug therapies under current investigation for POTS is DDAVP, also known as vasopressin. DDAVP is a volume expander that is currently approved for use in cardiac resuscitation under Advanced Cardiac Life Support (ACLS) guidelines, and for the treatment of the neuroendocrine disorder called diabetes insipidus.  Preliminary studies show that DDAVP may attenuate tachycardia and improve complaints in patients with POTS (4).

Anecdotal reports from people with autonomic nervous system dysfunction show that the internet is a powerful force in motivating people to stay alive; without it, some people say they would have literally died (5). In 2006, social networking for dysautonomia and POTS was in its infancy. Since then, a multitude of websites, blogs, YT videos and channels have emerged. The characterization of the importance of these social media sites has not previously been reported.

Many patients report a lag of time between symptom onset and diagnosis of dysautonomia and POTS. This can be extremely frustrating for the doctor and the patient as well. Time and resources are spent, sometimes to the tune of decades without a diagnosis, and an unknown amount of time and medical resources are lost.  Perhaps it is this pervasive frustration that leads one patient to another. Or perhaps it is that being bed-ridden and computer-savy are compelling forces that turn a patient to the internet for help.  Turning to social media and the internet, users regularly frequent sites that provide chats, friendships, and educational information about their disease.

Results show that 'dysautonomia' and 'POTS Syndrome' websites frequently conjure separate discussions, blogs, or videos.  Findings suggest that while the online 'POTS Syndrome' category may concentrate on the POTS diagnosis proper, there is a plethora of information equally available on 'dysautonomia' websites that may not be discussed on POTS pages.

For both 'dysautonomia' and 'POTS Syndrome', there are more YT videos than websites for each category, added together from Yahoo and Google Search Engines. It seems that patients reach out to one another through the YT social media website, and the significance of turning to another person who can relate to the disease process is of significant worth with both dysautonomia and POTS. The value of on-line friendships in assisting patients with their diagnosis needs to be further evaluated.

Since 2006, a robust increase in the awareness of dysautonomia/POTS Syndrome has occurred. If one exclusively remains on either 'dysautonomia' or 'POTS Syndrome' sites, one may inadvertently omit a significant proportion of the total information. Each key word seems used in a unilateral manner such that there is not much cross-over between website discussions, as if these were two separate entities. In fact, clinically, the two terms are used interchangeably although POTS is a subcategory of dysautonomia.

Both Yahoo and Google Search Engines sites are excellent for listing websites characteristic of the key word. There is little to no repetition of listed sites, and all are relevant. Because of the unique classifications of diseases affecting the ANS, there is a great chance that the information of online information is segregated. Therefore, one can make a case for doing Searches on both words, separately or together, in order to broaden the scope of the Search. Yahoo and Google Search Engine sites for POTS are specific for POTS and not the general dysautonomias, and the dysautonomia sites can also be relevant for a diagnosis of POTS.

It is unknown whether patients with POTS regularly stay on the subcategory of 'POTS' or also frequent 'dysautonomia' sites, or whether patients regularly visit sites under both categories.  Research on the types of key word searches and the frequency and identity of website searches is needed to fully quantify how social media influences patient awareness and education.

The use of social media YT is a significant tool for both dysautonomia and POTS. Patients put themselves on a video Channel and maintain posts over time. Various life events are videotaped for others and many Channel comments and Reply Videos occur, depending on the Channel and the user. It could be that YT Channels have the same effect of a Group Therapy event, in that patients are able to express themselves, share similar stories, provide answers to common questions, and relate clinical problems with answers from a variety of people. Patients can do this from the comfort of their own home or hospital bed, maintaining touch with the community even if they are bed-ridden. The YT videos for 'dysautonomia' are more sensitive at displaying relevant videos without an undue amount of repeated or irrelevant videos than videos on 'POTS Syndrome'.

Since many patients with POTS are young women of child-bearing age who were previously healthy, and since the disease may put the patient at increased risk of not being believed when complaining of such things as 'passing out', the YT community seems to have a supportive and resounding positive influence. More research needs to be performed to assess the nature of having a diagnosis of dysautonomia or POTS and the subsequent influence of YT in improving quality of medical care and/or quality of life.

To consolidate information, efforts, and research, the key words, 'dysautonomia' and 'POTS Syndrome' should both be used in the heading or as labels so that all websites, blogs, and videos can more properly be docked.

(1) Grubb B.P., Kosinske D., et al. The postural tachycardia syndrome: a neurocardiogenic variant
    identified during head-up tilt table testing. Pacing Clin Electrophysiol,  1997; 20:2205-2212.
(2) Ramsdell C.D., et al. Midodrine prevents orthostatic intolerance associated with simulated
 spaceflight. J App Physiol Jan 2001; 90(6):2245-2248.
(4) Coffin ST, et al. Desmopressin acutely decreases tachycardia and improves symptoms in postural
    tachycardia syndrome. Heart rhythm; 2012, May.          
(5) Anecdotal reports given to Margaret A. Ferrante, M.D.

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