Postural Tachycardia Syndrome (POTS)
An excerpt from Chapter 17 in the book,
My Action Plan for Stopping the Symptoms of
Mitral Valve Prolapse Syndrome/Dysautonomia
Including the Overlapping Symptoms of
POTS, Fibromyalgia and
Chronic Fatigue Syndrome/ME
MVPS and Postural Tachycardia Syndrome (POTS)
As far back as I can remember I would see spots in front of my eyes whenever I stood up quickly. First I would see the spots in my peripheral vision, but as the number of spots increased, they moved across my eyes until they obstructed my entire vision. Then the spots would rapidly dissipate almost immediately. It felt like a screen wipe in a movie where one scene wipes across the screen to another scene by fading in and out, and I was in that dark place in between for only a second or two. I never felt weak or scared. In fact, I thought it was normal and never complained about it. I rarely experience the spots anymore, but I do sometimes feel a little dizzy when standing up quickly, so the issue still exists.
But for some people it can be a daily problem that does not easily resolve after standing. People with this condition are often diagnosed with postural tachycardia syndrome or POTS, which is considered an autonomic problem affecting the regulation of blood flow. For these people, the longer they are upright, the more blood pools toward the lower part of their body, causing a variety of difficult symptoms with the most common being a rapid heartbeat or tachycardia. This can occur not only when standing up but also when just changing positions while lying down.
When blood pools in the lower part of the body and does not return to the brain, the body’s safety mechanisms will jump in to help by releasing adrenaline. The adrenaline tightens the blood vessels to help them do their job and send blood back to the brain. But as I have discussed in this book, adrenaline also causes shakiness, pounding or skipped heartbeats, chest pain and may trigger more MVPS symptoms as is typical for me.
POTS and My MVPS Action Plan
So realizing that I am somewhat affected by POTS, the treatments and recommendations for it were of interest to me while developing my action plan. As I researched POTS, I realized that most of my treatments for MVPS/D were either recommended for POTS or helpful for it. That makes sense to me in that POTS is often associated with MVPS. In my research, I learned that people diagnosed with POTS also report other forms of dysautonomia, and dealing with dysautonomia has been the focus of my action plan. In addition, the overlap with MVPS symptoms is obvious when looking at the symptoms of POTS.
Symptoms of POTS include:
Lifestyle recommendations are also similar to those for MVPS. People with POTS are advised to avoid alcohol, sugar, caffeine and extreme heat, but to include drinking more water, doing mild exercise, eating a balanced diet high in fiber and increasing sodium.
Conventional Treatments for POTS
Although I have included information on a breakthrough treatment for POTS later in this chapter, I usually start my research by learning what is available in conventional medicine. The common and more conventional treatment for POTS is medication. This includes salt tablets to help retain fluid, fludrocortisone to help decrease the amount of sodium that is excreted in the urine, pyridostigmine to help decrease muscle weakness, midodrine, used to treat low blood pressure and/or a beta blocker. In addition, compression stockings are used to help push the blood up from the legs. There is a considerable list of drugs that can make POTS worse. See more information on drugs to avoid at the American Heart Association Journal website.
Mast Cells and POTS
During a joint meeting with patients at a Mastocytosis Society conference, physicians noted a potential connection between mast cell issues and people diagnosed with POTS. Mast cells are part of the immune system that, when activated, release histamine in response to an antigen or a foreign substance. It is similar to experiencing sneezing and a runny nose during an allergic reaction. Most people are familiar with the effect mast cells have in the nasal passages, but mast cells are also found in other parts of the body, including the gut, lungs, skin and around blood vessels. An overactivation of mast cells in any of these areas can cause inflammation resulting in a variety of symptoms. (See: “Gastrocrom,” WebMD, webmd.com.)
I take the prescription, Gastrocrom (cromolyn sodium) to control my IBS symptoms. Cromolyn sodium helps to stabilize mast cells in the gut to relieve stomach problems like diarrhea, pain, nausea, and vomiting. It also helps relieve flushing, headaches, and itching. Quercetin, sold over-the-counter as a dietary supplement, is also a mast cell stabilizer. If I am experiencing any mast cell issues like people diagnosed with POTS, then at least I know that I am helping to relieve the effects since I already take cromolyn sodium daily for my MVPS/D symptoms. See more on Cromolyn Sodium and Quercetin in Chapter 13: Why I Feel It in My Gut and How I Treat IBS, GERD and Gastritis.
The Adrenaline Connection
Another benefit to controlling mast cells is to prevent the release of adrenaline. Here’s how it works. During an allergic reaction, the body releases histamine. It then tries to reduce the histamine by releasing adrenaline. Avoiding allergens or treating them as soon as possible can help prevent the flooding of adrenaline into the system. I discuss more on this in Chapter 11: Taking the Fear Out of Anxiety.
A Breakthrough Treatment
I met one person with POTS when I attended one of the programs that is explained in Chapter 16: Breakthrough Treatments That Changed My Life. Before she did the program, she was confined to a reclining wheelchair, unable to even sit upright. Once the home program helped her become mobile, she signed up to take the “in-person” course that I attended and where we met. She was doing so well that she was able to fly to another city to attend the course. She continued to get better during the five-day conference. The program, however, takes diligence to continue the training practices at home for several months to a year to optimize the benefits.