For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

Postural Orthostatic Tachycardia - On the Hunt for Truth


Everyone looks to find answers about why our life plans can be abruptly altered without our cooperation.  Whether its a tragedy, an illness, an unexpected career hurdle, we want to know why it happened and what we can do to gain back control of our lives.  Chronic illnesses are the same.  We want to know why, dammit, we are faced with this challenge that is not of our choosing.

In some cultures people seem to be less anxious about finding answers than we are here in the western world.  Perhaps it is because their unexpected flummoxes happen on such a regular basis they just dont have the time to search for answers or maybe they just chose leave most of their major life events in the hands of their deities.

In our culture, however, we need to have answers; we need to know why we are sick.  After all EVERYTHING can or should be able to be explained by science, right?  So there MUST be an answer, a solution, a cure if only we are smart enough or persistant enough to find it.

The drug companies have cleverly redirected this noble quest for answers over the past few decades by focusing our attention on the symptoms of our illnesses.
"If you suffer from {name the symptom} then look no further than {name the drug} for relief."
Thanks to the marketing efforts of the pharmaceutical industry we now see removal of symptoms as partal answers, partial cures to our illnesses.  Drug therapies can be the FIRST place we look for answers to our ills.  In fact, we can come to a full stop in our hunt for answers if the drug companies don't sell something that addresses our complaint.

For the lazy this is ideal: Do you have high blood pressure? No problem.  Take this drug and it will lower your blood pressure to an ideal level.  I call this the Homer Simpson approach to medicine.

Of course there are life saving drugs and thank goodness they are available.  But next time you see an ad on TV flogging a particular drug take note if the drug mentioned is lifesaving or just a convenient "fix" to a symptom.

I see this "focus on the symptom for a quick fix" not very helpful in helping those who are searching for answers to their health challenges that are not well understood by scientists.  Its the equivalent to a detective solving a crime based on circumstantial evidence "The butler did it!!"  When the guilty party is actually a roving stranger with a strange habit of murdering people who wear plaid socks.

I know in my quest to better health I don't want to become distracted, to give up my hunt for answers and go for quick fixes for symptoms.  I want to get to the truth behind why I am ill.




Update or Why the Woman Fell off the Rowing Machine...

If you have read some of my previous posts you will have learned that during one of my exercise sessions on the rowing machine my blood pressure suddenly crashed and I fell off the rower. That marked the start of the progression of a pre-existing condition which had been causing my POTS and OI.

As someone who has experienced POTS and OI on and off for many years and, in some previous instances, was confined to a wheel chair in order to get things done, I have always told myself "it could be worse; I could have a terrible skin rash and be itchy all day".   Well, I don't have an itchy skin rash but I do have Ehlors Danlos and a progressive mast cell condition which I might consider swapping for an itchy rash if one could do such a thing.

When I started my blog I wanted to share my experience with the Levine Exercise Protocol and what it did for my POTS symptoms.  More importantly, writing was my way of framing my reality of living with this condition.  Writing helped me examine some of the reasons why I was so physically challenged and what steps I could take, based on evidence, to make me feel better.  My writing was like a mirror in which I could see myself and my challenges objectively.

What overtook my writing was the blog became a source of information and, I think, optimism for others suffering from the same condition.  I began to feel an obligation to continue to write for the readers with optimism and to provide information because I wanted to help those who live with POTS and OI.  However, my mirror was gone and and I could no longer write honestly about my challenges.

It has been almost one year since I stopped writing and I would like to begin again.

But like a traveller from Boston who thought they were taking the "Northeast Regional" train to Virginia Beach when they were actually on the "Downeaster"on their way to Portland I find myself on a different journey.

Do I still have POTS and OI?  Yes, I have the collection of symptoms described as Postural Orthostatic Tachycardia and I also experience Orthostatic Intolerance.  What makes this journey different from what I expected is that it may end sooner and may end in a place that doesn't offer the same amenities as Virginia Beach.  But while on the train I will be as productive, useful, curious and strong as I can be because life is the most wonderful journey.

Mast Cell Disorder and POTS - Part III

Mast Cell Activation - Symptoms

If you are reading this blog because you have been diagnosed with POTS or OI then please pay attention to my posts on Mast Cell Disorders as they could be helpful!

People who have mast cell disorders can have a reaction to many different substances such as heat, cold, foods, stress, exercise, scents and infection.  The reactions can range from a stuffy nose to headaches, mild-severe upset stomach, flushing, blood pressure crashes and even anaphylaxis.  According to an article appearing in the Journal of Hematology by Gerhard Molderings et al, they list some of the clinical symptoms relating to misbehaving mast cells.  You can find the list here.  Note the hypotension, tachycardia, syncope, and symptoms describing "brain fog..."does it sound like POTS?

If you are sufficiently convinced that your symptoms warrant further investigation then I suggest you read the full text of the article by Molderings here to find out how a mast cell activation disorder can be diagnosed by your physicians.

Mast Cell Disorders and POTS - Part II

If you have been diagnosed with Postural Orthostatic Tachycardia and/or Orthostatic Intolerance have you ever noticed that your digestive system can get uncomfortable and your body just doesn't like certain foods?  Have you been diagnosed with IBS or do you suspect you have Celiac Disease?  Do you feel better when you eat very simple foods such as proteins and veggies?  Are you sensitive to scents and perfumes? Do you react poorly when taking certain medications?

If you answered yes to any of these questions then investigating whether you have a mast cell disorder may be warranted.

What are mast cells?
According to Theo Theoharides from the Tufts School of Medicine:
Mast cells derive from the bone marrow and migrate into connective and mucosal tissues (Galli, 1993), where they are located at strategic points around capillaries close to nerve endings (Theoharides, 1996). Mast cells are critical for allergic reactions where the stimulus is immunoglobulin E (IgE) and specific antigen; however, there are also other nonimmune mast cell triggers that include anaphylatoxins, kinins, cytokines, as well as various neuropeptides (Baxter & Adamik, 1978; Coffey, 1973) such as somatostatin (Theoharides & Douglas, 1978), neurotensin (NT) (Carraway et al., 1982) and substance P (SP) (Fewtrell et al., 1982). When stimulated, mast cells synthesize and secrete numerous vasoactive, nociceptive and inflammatory mediators (Galli, 1993) that include histamine, kinins, prostaglandins, leukotrienes, cytokines, as well as the proteolytic enzymes chymase and tryptase (Schwartz, 1987). 
Mast cell disorders are still rather poorly understood.  As an Immunologist from Brigham & Women's said, "Our current level understanding of mast cells is similar to how well we understood T-cells in AIDS twenty years ago.  However, there is more research being done now which is very helpful in increasing our knowledge ."

How to find out if you have a Mast Cell Disorder?
The "gold standard" of diagnosing mast cell conditions used to be a serum tryptase test.  This is a blood test that can be requested by your family doctor.  Not many labs actually do tryptase tests so your blood sample could be sent as far away as the Mayo Clinic for investigation.  Tryptase is an enzyme which is produced by mast cells when they degranulate along with histamine and other substances.  An elevated tryptase result could indicate that your mast cells are busy and active.

However, researchers and specialists in mast cells now know a normal tryptase test does NOT rule out a problem with your mast cells.  Here is a link to a article published in the Journal of Hemotology by Molderings, Brettner et al in March of 2011 which not only describes the variety of mast cell misbehaviour but also diagnostic criteria and treatment options.

Does that mean I don't have to exercise anymore if my POTS or OI is related to a mast cell problem?
Whether your POTS is caused by mast cell problems or the cycle of the moon, evidence suggests that maintaining adequate blood volume and increasing your cardiovascular health through a specific program like the Levine protocol will help ameliorate the symptoms of POTS.

Unless you doctor specifically recommends you do not exercise because of some other reason other than you suffer from POTS or OI then you should really consider contacting the Levine team to see if you are eligible to participate in their study (I believe they are still accepting patients).







Mast Cell Disorders and POTS - Part I

Last April as I was happily performing my exercises as per the Dr. Levine protocol my blood pressure crashed.  Up until then I was feeling pretty good: my POTS symptoms were diminished thanks to the exercises and lotsa salt diet and I was looking forward to an awesome summer.

At the time of the crash I was using a rowing machine, I had my Garmin heart rate chest strap on and was tracking my heart rate using iCardio (DigiFit) on my iPad.  Twenty minutes into the exercise the bp crash occurred and I fell off the rowing machine.  The same blood pressure crash occurred the following day and the day after that.   The crash did not seem to occur when my heart rate increased rather it crashed after the increased heart rate was sustained for >5 minutes.This new symptom was perplexing because previous to then I had not had a blood pressure crash while sitting and exercising (rowing).

I emailed Dr. Levine's team describing these events.  The response was as follows: 1) these events are not consistent with typical POTS, and 2) they are probably not due to a structural defect with the heart (I was thoroughly checked for this).  Intriguingly I was asked if developed hives or shortness of breath while exercising.  I didn't but the question led me to investigate exercise anaphylaxis.
Exercise Anaphylaxis: Def - A form of allergy manifest by a sensation of skin warmth, pruritis and erythema, urticaria, hypotension, upper airway obstruction DiffDx Cholinergic urticaria, anaphylaxis.  Websters Dictionary
Well, it just so happens that a group at Brigham & Women's Hospital is conducting a clinical study on exercise anaphylaxis.  This group specializes in immunology, and more specifically, mast cell disorders.  I called one of the researchers and gave her my abbreviated medical history (the long form of the history takes several hours) which she kindly listened to.  She suggested that based on my history of POTS and anaphylaxis as a child I be investigated for a mast cell disorder.

Can mast cell disorders cause POTS?  The answer to that question appears to be yes.  In an article entitled Understanding the Mechanisms of Anaphylaxis by Richard D. Peavy and Dean D. Metcalfe from the Laboratory of Allergic Diseases, NIH they talk about when mast cells are activated producing histamine.
 Histamine stimulates vasodilation, and increases vascular permeability, heart rate, cardiac contraction, and glandular secretion.
Sudden vasodilation causes blood pressure to crash and people to fall off rowing machines.  Mast cell disorders and POTS...a worthy line of investigation for someone looking to get at the root cause of their POTS!!