POTS Letter For Students by Dr. Ahern and Stacy Reed, RN

For those of you POTS patients who are still in school and find yourselves struggling to get to class and managing to stay conscious and alert once you get there, this letter may be beneficial to give to your teachers, professors, school nurse or guidance counselor. I sure wish I would have had something like this to distribute to my professors during my senior year of college when I first fell ill with POTS. It would have made my academic life much easier and it would have been much easier for my instructors to understand exactly what I was going through. Trying to explain such debilitating and peculiar symptoms to people is often half the battle in my opinion. Luckily POTS patient Stacy Reed and her doctor Thomas Ahern have teamed up to create this letter which helps bridge the communication gap between students suffering from POTS and their instructors. Please feel free to use their verbiage and distribute this letter to your own teachers and professors, anyone who needs to know what you're going through on a practical level.

RE: Postural Orthostatic Tachycardia Syndrome (POTS)

To Whom It May Concern:

I have been diagnosed with Postural Orthostatic Tachycardia Syndrome. This is a form of Dysautonomia, which is a malfunction of the autonomic nervous system, the system that regulates all of our automatic functions, such as heart rate, blood pressure, temperature regulation, blood flow, etc.

Patients with Dysautonomia often present with numerous symptoms. These include: loss of consciousness, a feeling that one is about to pass out, intermittent rapid heart rates, very low blood pressure, or significantly elevated blood pressure. Patients also describe symptoms of increased anxiousness, excessive sweating, recurrent headaches, dizziness, low-grade fevers, constipation, diarrhea, abdominal pain, and nausea.

Another symptom that impacts one’s school and work performance is the presence of periods of impaired cognitive function. Individuals who experience this often describe it as a “brain fog.” Patients with Dysautonomia are extremely sensitive to warm environments; avoidance of these environments is suggested. Prolonged periods of standing are extremely difficult, so patients may request to sit or lie down during class or work. As a result of these symptoms, individuals may also present with depression.

Intermittent absences from work and school are common.

It is imperative that patients have access to their prescribed medications, as well as fluid supplements and salty snacks. Access to fluids are necessary during class or work.

Other accommodations requested of schools on behalf of a patient include:

• Avoidance of known symptom triggers when possible.
• Permission to record classes and/or lectures, which can be reviewed at a later time.
• Longer test-taking times, 50% greater time.
• Communication with teachers of the individual’s condition, affirming that absences and slight delay in submission of course work may be necessary.
• The school nurse should be made aware that the normal sitting down vital signs are not adequate for these patients; orthostatic vital signs must be taken, supine, sitting, and standing heart rate and blood pressure, as well as the objective and subjective signs and symptoms in each of these positions.

It is important to understand the disabling nature of this condition. Although it is invisible to those looking on, it is very real to those experiencing it. Research has shown that patients with POTS have a quality of life similar to those with congestive heart failure or chronic lung disease.

(Information referenced from Thomas Ahern, MD, FACC; provided by Stacy Reed, RN, RRT-NPS November 2011.)