For people diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Intolerance (OI), follow me as I document my progress towards recovery while on the research treatment program by Dr. B. Levine of Texas Click here for more...

Friday, March 1, 2013

POTS and the Pseaudoallgergen-free Diet

What to eat?

Here is a sample menu on the pseudoallergen-free diet:
All ingredients are fresh or fresh frozen.  No spices are used other than salt.  I go crazy on salt and will frequently use Celtic sea salt on meats and fish, Himalayan pink salt on veggies.

Breakfast
3/4 cup  of 1% goat's yogurt
1 scoop of organic pure whey
OR
1/4 cup of steel-cut oatmeal cooked in water and salt (oatmeal is gluten-free providing it is cut using machinery that is not cross-contaminated by other grais...read the lable to be sure)

Snack
celery sticks
carrots

Lunch
2 cups of steamed brussel sprouts, broccoli or 3 cups of romaine or arugula with 2 tbsp sprinkled feta cheese and no dressing
baked sweet potato
fresh steamed fish or poultry 

Snack
soft goat's cheese on cucumber

Dinner
2 cups of steamed kale
fresh fish, meat or poultry
baked squash or sweet potato

Wednesday, February 27, 2013

POTS, Exercise and Gummy Bears

The pseudoallergen-free diet, although incredibly restrictive, is easier to adhere to than you might think.    Imagine yourself going on the South Beach Diet or Atkins Diet.  Now imagine yourself cheating on the diet...eating too many carbs or quaffing a beer during the "no alcohol" phase.  Now after cheating on the diet imagine yourself being struck with brain fog, rapid heart rate, blood pressure crashes and a migraine.  How likely is it that you will cheat on your diet again?

Recently, where I live, we enjoyed a major snow storm which meant kids get a 'Snow Day" from school.  On this particular Snow Day my daughter and I decided to snuggle up in front our flat screen to watch a couple of romantic chick flicks that the boys wouldn't tolerate if they were around.  To me the perfect food pairing with a chick flick is gummy bears.  In fact, I generally have a constant craving for gummy bears which becomes irresistible when watching movies.  Gummy bears are NOT allowed on my pseudoallergen-free diet.

After satisfying myself with one small bag of the delicious gummies I didn't experience an immediate reaction so I finished the movie in peace.  However, my POTS symptoms did start later on.  The next day, although feeling better, when I tried to do my cardio and weight training....NO DICE!  In spite of a few weeks of steady training and improvement I was unable to complete my cardio or do the weight training because of POTS.  It took at least 2 -3 days to be totally rid of the effects of the innocuous gummies.

What I learned

  1. There are foods that cause POTS-like symptoms that are not obvious because their effects can be delayed.
  2. Gummy bears are not technically a food. See definition of food:
    /fo͞od/     Noun - Any nutritious substance that people or animals eat or drink, or that plants absorb, in order to maintain life and growth.
  3. Eating a food (or substance) not on the pseaudoallergen-free diet can cause POTS-like symptoms for hours or even days after ingestion.
  4. It is better to stick with the diet than indulge in cravings.


Saturday, February 9, 2013

My POTS Cured?

In my search to find a cure for POTS I have stumbled upon something that has had a dramatic impact on my symptoms.  After months of getting steadily worse with episodes becoming more severe I have made an almost complete recovery and I no longer have the symptoms known as Postural Orthostatic Tachycardia.


Background:


1) POTS sufferer from way back: I have experienced episodes of POTS and Orthostatic Intolerance intermittently all of my adult life.  I have been thoroughly investigated for heart defects and conditions, endocrine disorders, neurological causes etc etc.

2) Symptoms wax and wane:  As anyone with POTS should know, symptoms can vary from day to day and from year to year.  The collection of symptoms associated with POTS are numerous and include brain fog, Orthostatic Intolerance, pain, migraines, tachycardia.

After years of enjoying just the more common POTS symptoms new symptoms appeared such as swelling of face, flushing and wheezing.  I started experiencing blood pressure crashes while on a rowing machine (recumbent). The brain fog, body aches, dizziness and general malaise also increased.

3) Diagnosis: My current diagnoses include POTS, Orthostatic Intolerance, EDS III and suspected Mast Cell Activation Disease (MCAD).  I have normal tryptase levels, no detected igE-mediated allergies.

What I tried:


A) Exercise: When I couldn't stand or walk I would try to do core abdominal exercises in bed or laying down.  Even when my energy level, pain or discomfort is bad, exercising is a positive activity.  Allowing myself to become de-conditioned will and does worsen my POTS symptoms.  

After completing the Levine Protocol I felt much better and was more functional day-to-day.  Although exercise is an absolute positive, it alone was not enough to slow the progression of my symptoms.

B) Medications and Interventions:  I refused to take Midodrine (Amadine) since it has not been found that I suffer from Parkinson disease or Autonomic Failure or any other condition that can cause Orthostatic Intolerance.  I felt I could encourage my system to improve blood volume and overall orthostatic health without using meds as I believed that Midodrine would interfere with my body's own ability to adapt.

Fludrocortisone I saw as a short term intervention (three month) to assist with building blood volume. The same with IV fluids.

Salt loading in diet while monitoring potassium levels in blood and adequate water intake is my preferred method of retaining blood volume.

However, when cardio exercise became impossible due to blood pressure crashes I went on Mast Cell Activation medications such as ketotifen, loratadine, cromolyn, tranilast, ranitidine to see if my symptoms were caused by a mast cell reaction. If my symptoms improved on the meds then that would be a strong indication the symptoms were mast cell related.

My tolerance for exercise increased tremendously after the mast cell medications were active.
C) Environment: After responding to the mast cell medications I attempted to reduce the number of elements in my life that could possibly be "triggers" of mast cells upon exposure.  I rid my house of toxic cleaners, fragranced personal care products, fragranced laundry detergent, processed foods, perfumes etc etc.

Although these measures helped in the short term, over time my condition continued to deteriorate.  My health was so bad that I could not go out in public without collapsing.  No dinner parties, no shows, I even stopped flying in airplanes.  UNTIL...

I tried, along with the above measures, the Chronic Urticaria Pseudoallergen-free Diet.  Chronic Urticaria is a nasty condition where patients experience hives or an itchy rash.  The diet is extremely restrictive and those who have been on it for any length of time would think even Soylent Green sounds tasty.  However, it has proven extremely effective for those who have urticaria.  After three weeks of strictly adhering to the "Buzz-killer" diet my symptoms were disappearing.

 Here is a copy of "The Forbidden Diet"

Do not eat any of the following, not even a tiny little bit:
  • Breads and grains (except for oats)
  • Alcohol, vinegar
  • Sesame, nuts, peanuts and peanut butter
  • Pasta with eggs 
  • Cake, biscuits
  • Potato chips or any junk food
  • Margarine, mayonnaise, mustard
  • Eggs
  • Smoked meats
  • Seafood
  • Tomatoes, potatoes, sweet peppers, spinach, basil, artichokes, peas, mushrooms, rhubarb, olives
  • No pickled anything
  • Fruit, dried fruits, and fruit juices
  • Herbal tea
  • Use only fresh foods; no preserved foods, except deep-frozen foods without any additives
  • Chewing gum, candy
  • Spices and herbs (except salt and chives)
  • Additives: E100-E1518, preservatives or artificial colors, gelling agents, thickening matter, humectant, emulsifiers, flavor potentiators, antioxidants, separating agents, sweeteners, baking agents, modified starches, foaming agents, stabilizers, flavoring agents

What I think this means:

Some of the food items I have eliminated with the diet were not foods that I experience obvious reactions to.  Upon reflection I started seeing connections between eating a food or being exposed to a perfume or other toxin and then having a bad POTS day.  In fact, the more I though about connections between my symptoms, foods and toxins (personal care products etc) the more I realized there is indeed a relationship.  Chronic Urticaria is a reaction on the outside, on the skin.  Why couldn't my reactions, which present as POTS symptoms and now anaphylaxis, be taking place on the inside?


Like The Straw That Breaks the Camel's Back
For some UNKNOWN AS YET reason my body is overly sensitive to all manner of substances.  Like the proverbial straw that breaks the back of a camel, when too many of these substances are present, the back breaks and I experience symptoms.  I was like a injured camel with straws constantly falling on my back.  Until the straws were gone I couldn't heal.

Metaphors aside - when I reduced my pseudo allergen burden by going on the pseudo allergen-free diet and reducing the exposure to toxins, my POTS symptoms reduced dramatically.

I don't know why this works and neither do my doctors...

Blaming my POTS on an inflammatory or mast cell activation response does not explain why, after many healthy years, my POTS will flair or why adolecsents can experience POTS and then grow out of it.  I have no explanation as to why I have POTS or why I respond to a diet designed for people with itchy rashes.  There are many unasnwered questions but I do know that the measures outlined above are working.

If you have POTS would I suggest you try the above measures?


No question in my mind YES!  Why?  I don't need to answer that for you.
1) Exercise, salt loading/fluids
2) Restrictive pseudo-allergen diet
3) Get rid of all suspect substances from your house, work and car
4) Try over the counter mast cell medications such as H1 and H2 antagonists for at least 10 days to see if they have any effect
5) Do 1 and 4 with the support of your doctor

NOTES

A "relapsing remitting" pattern of illness is noted in Molderings journal article on Mast Cell Activation Disorders.   
In studies, POTS has been linked to Mast Cell Activation for many years.   
Exercise-induced anaphylaxis, a mast cell misbehaviour problem, can also cause sudden drops in blood pressure. 

Wednesday, December 26, 2012

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.




Monday, December 17, 2012

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.

Wednesday, January 11, 2012

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).







Tuesday, January 10, 2012

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!!  


Monday, September 26, 2011

OI, POTS and Exercising - Procrastinating...?

I was planning on writing a pots on the exciting Midrodine story: the drama of the FDA vs Patients but elected to write about the POTS and exercise debate instead.  I personally believe this matter to be so important to the health of so many POTS sufferers I thought I would weigh in again.

POTS or OI can be caused by a number of different conditions but can ALSO BE CAUSED or MADE WORSE by deconditioning.  This is a fact.  By embarking upon an exercise program which helps overcome exercise intolerance it can (not in all cases) greatly assist with managing symptoms.  In some people it can be a CURE for POTS. (cure meaning the patients no longer met the criteria for POTS)  This is also a fact.

People who have OI may also have received a diagnosis for POTS (and vice versa).  Regardless of whether you have been diagnosed with POTS and/or OI you may still benefit from a managed exercise routine.

What is the difference between Orthostatic Intolerance and Postural Orthostatic Tachycardia?
Here is how Vanderbillt describes Orthostatic Intolerance and Postural Orthostatic Tachycardia:
When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt’s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing, and a standing plasma norepinephrine level of at least 600 pg/ml. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used.
Did you know Orthostatic Intolerance can be induced in otherwise healthy subjects?
Yes, that is correct.  Evil scientists can inflict this dreadful condition on subjects by enforcing bed rest, particularly if the bed rest includes a head down tilt posture.  There is a report by Waters et al which compiles the results from 16 studies from 10 different researchers on enforced bed rest and its consequences.  Each of these studies look at the MECHANISMS of orthostatic hypotension such as cardiac atrophy (aka "Grinch Heart)", sympathetic dysfunction, arterial and venous alteration.  It appears that a decrease in stroke volume is the nastiest culprit in promoting symtpoms of OI.

If I tie my husband to the bed for 2 weeks will he get POTS?
It seems that some otherwise healthy people are pre-disposed to getting POTS under certain circumstances and others are not.  In studies I have read up to 80% of healthy subjects can exhibit symptoms of OI after 2 weeks of bed rest.  My suggestion is to tie your husband down for two weeks if he appears unsympathetic to your symptoms.

.





Friday, September 23, 2011

Superman, Strength and POTS

Living with a chronic condition can be a total drag for you, your family, friends. Postural Orthostatic Tachycardia is a particularly nasty variety of chronic illness because it can affect both the cognitive and physical functions of the body.

Working wirh only half a brain while struggling with pain and fatigue is a real challenge. In addition to coping with the physical realities there are also life changes that must be dealt with: the financial impact of leaving a job, the disruption to daily responsibilities such as grocery shopping, paying bills, even taking the dog out for a walk. These changes can create feelings of guilt over the necessity to rely on others to take over ordinary duties, of failure over loss of control over one's life, and of frustration that more cannot be done.

I have experienced all of these feelings at various times. Sometimes it seems very easy to cope and at other times it is hard to cope. And in the very hardest times I try to cling to my three mantras:
1) be hopeful 2) be forgiving and 3) recognize my inner strength.

Be Hopeful
Hope and faith are mixed together and like peanut butter and jelly in a sandwich; they compliment each other beautifully. We can draw upon faith to recover lost hope and in the presence of hope we are reminded of our faith.

Be Forgiving
Taking responsibility for our actions is logical and honorable. Feeling guilty for what is beyond our control is not. When I start feeling guilty about being sick and what effect my illness may be having on others I ask myself "have I done everything I reasonably can to help myself"? If the answer is no (for example not drinking enough fluids so triggering symptoms or binging on potato chips ;-) then I accept responsibility for my choice and try harder. Guilt is a negative feeling and not conducive to recovery... get rid of it.

Recognize inner strength
One doesn't have to go far to stumble over stories of great courage, endurance and perseverance.  But even the most heroic characters can have moments of weakness. Recognize all the things we do which can be considered heroic: To get out of bed and face another day when we are hurting and sick is heroic.  Doing exercises when it is hard to stay upright is heroic. Staying positive when we want to give in to sadness takes strength.

I congratulate myself on the small stuff.
Let's give ourselves credit for facing tough challenges!

Soldier On!

Wednesday, August 24, 2011

Is the Levine Protocol a Cure for POTS?

Excellent question if I do say so and I believe there is a very simple answer: If a patient's POTS or OI is caused by deconditioning then the answer could be "yes".  If the POTS is caused by something else then it probably will not cure POTS because in order to do that you would need to cure the underlying condition. 


If a patient's POTS is caused by something other than deconditioning then will they benefit from the protocol?

Here is my rather long answer to the above.  POTS does not seem to be a disease rather is a cluster of physical symptoms which present when certain conditions are met.

For example, here are some conditions which may cause and/or make POTS symptoms worse:
  • Ehlers Danlos Syndrome
  • Parkinson's
  • Multiple Sclerosis
  • Mastocytosis
  • Mast Cell Activation Disorder
  • Hypthyroidism
  • Menstruation
But regardless of which set of conditions are present in a patient certain factors appear to be key to ameliorating the nastier symptoms of POTS.  Namely:
  1. Ensuring adequate blood volume
  2. Promoting and maintaining healthy cardiovascular and circulatory systems
The protocol is designed to help with both 1 and 2 above while at the same time dealing with the inconvenient matter of exercise intolerance which POTS patients can suffer from.

So to answer the question above as "If a patient's POTS is caused by something other than deconditioning then will they benefit from the protocol?"  the answer is most probably yes!

Friday, April 22, 2011

Wall Street Journal article POTS, Grinches and Astronauts

Check out this article published in the Wall Street Journal about Dr. Levine's research with astronauts and its application to treating symptoms of Postural Orthostatic Tachycardia or Orthostatic Intolerance:

One Giant Step For Better Heart Research?
By AVERY JOHNSON
Researchers in the midst of a several years' study of how astronauts' hearts react during long space voyages reported initial findings that they say could help improve cardiac care on Earth.


They found that astronauts benefitted from certain types of exercise, something that could help patients with heart failure or abnormal heartbeats, or those who are bedridden after surgery, a stroke, or during pregnancy, whose hearts atrophy much like an astronaut's in space.


Heart muscles don't have to work as hard to circulate blood in space because gravity doesn't exert the same force. Astronauts returning from missions frequently feel lightheaded and sometimes pass out. After weeks or months in space, the heart appears to shrink, cardiologists say, blood volumes decrease, and the astronaut can experience hypotension, or abnormally low blood pressure.

heartbeat

What's Lost in Space

Studying how astronauts' bodies change in space may help patients on Earth.
  • Heart mass decreases up to 25%
  • Blood volume decreases up to 20%
  • Bone density decreases about 3%
  • Blood pressure stays relatively the same. (Back on Earth, blood pressure can decrease by 20% to 25% or even more.)
Source: Benjamin Levine; Michael Bungo
The research is in its early stages, but some of it offers fresh interventions for heart patients. Benjamin Levine, one of the leaders of the NASA project, is studying astronauts exercising in space to help patients with what he calls "Grinch Syndrome," characterized by low blood pressure and the inability to stand up without losing consciousness. (The name refers to how it causes the heart to be two sizes too small like that of the Dr. Seuss character.) Dr. Levine found that seated exercise, such as using a rowing machine, can aid those patients.
The cardiologists presented the research from the NASA-funded project last week at a symposium held every other year called "Humans in Space," and earlier this month at the annual meeting of the American College of Cardiology.
"Cardiovascular research in space gives us the unique opportunity to study the effect of gravity on the heart and has led to novel understandings and therapies," said Dr. Levine, a cardiologist at University of Texas Southwestern Medical Center.
Twelve astronauts are expected to undergo detailed ultrasounds while in space and MRIs before and after flight for half a year. The project has been collecting data for two years and so far five astronauts have completed the testing. In addition to changes in blood volumes and heart size, researchers are also investigating reports of heart palpitations, known as arrhythmias, in space. To Full Article...