Informational POTS Letter

Recently, I have come across a letter (via Defying Gravity) that was written by a sufferer of POTS, Stacy Reed, and her doctor, Thomas Ahern, regarding the debilitating symptoms of Postural Orthostatic Tachycardia Syndrome.

This letter would be extremely beneficial to those attending college who want their professors or their disability services office to gain a better understanding of what they suffer from. 

As we all know, Dysautonomia can be rather difficult to fully explain to others, and sadly...we are not always taken seriously.  

This letter is a professional document that can help anyone better understand our condition. 
Our life. Our struggles. 


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.)

What are your thoughts...
Do you think this is beneficial?


Electrolytes and Enhanced Water

The most common "remedy" that many people with POTS/Dysautonomia get told is to " drink, drink, drink!"  but does that always help? Here are some things you might want to consider if you haven't already...

Interestingly enough, many doctors fail to inform their patients that an over-consumption of "plain/tap water" can actually worsen your symptoms. When you consume excessive amounts of water (especially non-enhanced water) it flushes out the little sodium from our bodies that we actually have. Excessive consumptions of water can also lead to a dilution of the essential electrolytes that we need in our body to maintain proper heart rhythms and nerve functions, which we as POTS patients suffer with already.

So what exactly happens? First, it is important to note that the body uses essential electrolytes for muscle and nerve function (and pots patients nervous system are always in overdrive) - When we consume excessive amounts of water, our bodies naturally expel the water by means of urination, excessive sweating, etc... (and some POTS patients experience extreme night sweats, and excessive urination) So, the more we drink. the more we urinate. The more we urinate, the more essential electrolytes we lose. The more electrolytes we lose, the worse we can feel. Notice the patten? All of the water that you just drank to "feel better" is now flushing your system of the essential electrolytes every time your urinate. 
Are electrolytes really "that" important? I was told I need to drink A LOT? Yes! *The electrolytes that I am primarily referring to are potassium, calcium, magnesium, and sodium.* Electrolytes are responsible for maintaining homeostasis in the body and regulation of the heart and nerves. When we lose these electrolytes in our body (the ones that get flushed out by excessive fluid intake) we can feel nauseous and light headed...(which are also common symptoms of POTS). In people with POTS, it is very common for our electrolytes to get thrown off rather easily - which can cause a worsening of symptoms. 

What happened to me & what you can do? I did what I was told my my cardiologists and neurologists...I consumed plentiful amounts of sodium and water in a day and still wasn't seeing too much results. Later, I found that my 24urine tests revealed that my blood volume and  complete sodium counts were drastically low. This was hard for me to believe as I drank and drank through the day (always had a bottle of water in my hand & ate so much salt). However; by me drinking  plentiful amounts of "tap" water throughout the day, I was inadvertently making my symptoms worse. All of those fluids washed away most of the sodium in my body, which threw off my electrolytes, which in return made my blood volume drop significantly. (I couldn't believe it!) 

My doctors asked if I am drinking enough - quickly I responded, yes!  "I carry a water bottle with me usually everywhere I do!" With a head nod like he understood, he told me that I need to make sure I am consuming "electrolyte enhanced water" as water consumption is very important, but making sure our bodies are replenished with the electrolytes can be just as important for a POTSy as well. We are not the "typical individuals" - naturally, people with POTS have a low sodium count to begin with, so an excessive consumption of water can really alter our counts. This is why for POTS patients, it is especially important to drink enhanced water. So next time your are at your doctor, ask for a 24hr sodium urine test to see how your body is functioning throughout a complete 24hour cycle, if you haven't had one already and start drinking "enhanced" water!

Are all "enhanced waters" the same? No, no. and no! Some waters or drinks are full of (hidden) added sugars or unnecessary additives. The two best enhanced waters out there are Smart Water and 365Water from Whole Foods. These two water drinks are simple water with added electrolytes. Nothing else. Pure, and simple; meeting the basic needs! Beware of other drinks out there that claim to be just as good or "better".

If electrolytes are important, what about Gatorade or Vitamin Water? Let me start with Gatorade. Gatorade is packed with added sugars, and high fructose corn syrup. If that doesn't bother you, then lets dig a little deeper on why it should:  In order for your body to properly metabolize sugar, it needs all those vitamins and minerals (found in that lovely old gatorade you just drank) to metabolize them. Hm? Looks like you just lost all that much needed hydration and electrolytes and gained some icky sugar.
For more information on how our body metabolizes sugar, check out this article here 
♥ photo credit

Next, lets dissect the ingredients of the ever so popular vitamin water. (let me say that I have absolutely no idea why this beverage is called "water" as it has more sugar than even some bottles of gatorade or juice!) Beware...as the makers of smart water are trying to trick you. If you look at the serving size of one bottle it is 2.5 servings with approximately 13 grams of sugar (depending on the flavor) per serving. (If you do the math that equals 32.5grams of sugar per bottle!) Now, I don't know about you, but who really only drinks 1/3 of their bottled beverage
...especially if you have POTS?!

What kind of enhanced waters do you purchase, or prefer?
I hope everyone has a wonderful September!


But you LOOK good

Have you ever looked at someone and thought to yourself, how are they sick
They "look fine"
"I just saw them yesterday, and they were having a good time"

- Take a look at this situation
Does it sound familiar...
You pull up at a grocery store, supermarket, or a local mall and come across someone who uses a handicap parking pass that doesn't look like they have a disability. Thoughts roll through your mind and frustration may set in. You may even shoot them a dirty, snotty look or take it a little farther and speak your mind. This is something that happens more often than you may believe.

Now, what if that person really needed that spot. In order for some individuals just to have enough energy to shop at the store, (with or without a wheelchair) they need that closer parking space. Sometimes people can't walk more than a mere couple of feet without getting extremely light-headed and pass out. Maybe the extreme heat/cold is too much for their bodies and they must be at the closest possible location to the entryway.

It is important that people think twice before they make quick judgments, as you never know what is happening inside another persons life. Invisible disabilities are frustrating. The pain is real, the symptoms can be debilitating, but it can feel like no one understands (or believes you)...

How do you help someone understand what you go through?
..why you have to cancel so many plans.
...why you can't go out all the time
...& all the many "why's"

The following video is known as "The Spoon Theory" written by Christine Miserandino
Christine has Lupus, but this explanation is a great portrayal for any illness/disease, especially EDS and POTS.

If you would like a text/pdf version of "The Spoon Theory" to share with others, click here