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

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.


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!

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!

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?
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.


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...

Love and POTS

I received this press release via email the other and thought I should share the news about this happy couple!  (I have made one or two edits to the original release but only to remove the gritty details on the contest and to calm down the sales pitch)  I think it is really great that these two have found joy and comfort in one another.   May their swoons be swoons of happiness and not fainting episodes from low blood volume!

In February of this year, Steuben, a crystal glass manufacturer in the US, held a sweepstakes contest where the entry winner with the most heartfelt sentiment would receive a fiery red crystal heart- Internal Flame heart, engraved with the sentiment personalized as an engraving.

Kyli Wolfson’s entry of “Our love is a song I want to hear every day,” won the vote and when the folks from Steuben asked for more of her story they learned she and her fiancĂ©, Dustin, suffered from Postural Orthostatic Tachycardia Syndrome. Dustin had said the words of comfort to Kyli during a night when she was particularly sick.

A condensed description of the disorder in the couple’s words is: excessive heart rate increments upon upright posture – meaning you feel faint when standing up – but that’s just part of it. Your heart races as if you’re running in place all the time. Research shows that a POTS patient’s quality of life is similar to that of a congestive heart failure or chronic obstructive pulmonary disease patient. Coping with this disorder requires some serious lifestyle adjustment, and still results in many hospital stays.

Remarking that they’d seen each other at their very worst, Kyli pointed out that they see every day as a date. She continued, “Whether we’re on a picnic or at the hospital, there’s always love between us and a reason to smile.”

Interestingly, although Dustin’s declaration to Kyli describes how many couples feel regardless of age or health, one of the symptoms of POTS this couple shares is an increased sensitivity to sound. When they met by chance, each traveling with separate groups of friends, they were often retreating for quiet time at the same intervals.

In Dustin’s words, “It’s not so much about music…the love is like the melody and the lyrics are how you show your love.”  The tune of his statement was fresh in Kyli’s mind when she made the winning entry to the crystal heart sweepstakes and in Dustin’s mind when he proposed soon thereafter. As the couple plans their April, 2012 ceremony, they will have the hand-engraved Internal Flame as a lasting symbol of their commitment.

Kyli summarized their struggle and triumph with POTS, “Life with chronic illness gets terrifying at times. It’s almost always hard, always a challenge and often very, very lonely. There are times when I feel like I’m stuck inside a house that’s crumbling to pieces…times when the rest of the world seems like it’s moving, moving, moving...and I’m stuck in the same place. But on nights like this one, sick and scared, I remember the blessings…big and small…that have come out of this illness of mine. And I’m grateful.”

About Steuben
Steuben is the premier crystal glass manufacturer in the United States, and the world’s finest maker of pure crystal (according to Steuben). Since the 1930s, Steuben has collaborated with some of the world’s most important artists, including Henri Matisse, Salvador Dali, and most recently Ross Bleckner.

Salt Intake and Managing Blood Volume

There has been some really interesting posts on the new Facebook Group about sodium intake.  When I first started the Levine protocol I gradually built up to 10,000mg per day with the help of my nutritionist.  Working with my local physician I had my blood tested weekly to ensure my potassium levels were ok.

After about a month such high levels of salt I no longer needed such a high dose and gradually reduced the salt to a point that "felt" right.  I found that too much could trigger what felt like heart palpitations and other unpleasant feelings.

Since the purpose of the high sodium is to help with blood volume, it makes sense to combine the effort with the "bed wedge", carefully avoiding diuretics like caffeine and alcohol (I must admit the occasional glass of wine will sneak by my lips) and ensuring plenty of fluids.

The blood volume challenge is, for me, one of the less onerous lifestyle changes to make in helping managing POTS symptoms. Love that salt! ;-)

Day 44 of Dr. Levine's Exercise Protocol for POTS (A.S.*)

Tracking my Heart Rate using Digifit and an iPad
For the past 4 workouts I have being using my iPad, DigiFit software, and an ANT+ chest strap to view and record my heart rate during exercise.  I have found that my heart rate is much easier view on the iPad than on the wrist watch where I have to take my hand off the rowing machine bar to see the read-out.  A difficult maneuver when you're really going at it.

I can input the various workouts prescribed in Dr. Levines exercise protocol into the Digifit software on the iPad.  I can include the duration of the exercises and the specific heart rates zones they are to be performed within.  When I am ready to do a workout I simply go to the appropriate date in the calendar and click on the exercise.  Digifit automatically connects to the heart rate strap and away I go.  Once I am done I can upload the heart rate record to Training Peaks or even New Leaf (if I decide to start a metabolic exercise program).  The only thing Digifit does not record are the gasps and groans coming out of me while performing the exercise.

Today was a day when the protocol dictates I do my exercise on my rowing machine at the highest heart rate zone.  I had to keep my heart rate above 140 for 30 minutes.  This is, by far, one of the more difficult exercises in the protocol but I did it and I did not expire.  This being my second time around for Dr. Levine's exercise protocol for POTS I know that although I FEEL like I am going to expire I actually won't.  (If, on the other hand, I unexpectedly do expire then at least Digifit will be recording the event for posterity.)

My Golden Retriever has POTS...?

You want me to do what?
We know that physical deconditioning can cause or contribute to POTS- like symptoms.  We know that sleeping with your head down and your feet up can induce orthostatic intolerance in otherwise healthy people.  So, if the same can be said for dogs then my golden retriever MUST have Orthostatic  Intolerance or even Postural Orthostatic Tachycardia!

Over the winter months when the snow is on the ground and squirrels are snoozing in their nests, our dog Jack is a master at chilling on his bed.  We have known him to sleep for days, stirring himself only for the most serious situations such as eating, receiving ear scratches and tummy rubs or going outside to do "his business",  If the weather is inclement then he simply refuses to go out of doors, choosing instead to go back to sleep until such time as the weather is conducive for a short walk.  The winter for Jack is couch potato time.

Now that spring has arrived (whoopee!!!) and the little red squirrels are out in force, Jack will be resuming sentry duties guarding against 4 legged trespassers.  Will Jack experience a racing heart rate, chest pain, dizziness, exercise fatigue?  Will the winter-long deconditioning affect his squirrel chasing performance?

Obviously the danger of Orthostatic Intolerance from too much bed rest is of greater concern to working professionals such as circus dogs who must remain upright for prolonged periods.  As for Jack, we will keep him on all four paws and gradually get him back into shape in time for summer.

Chest Pain and Postural Orthostatic Tachycardia Syndrome

Have you ever wondered why people with POTS or OI get chest pain?  According to Dr. Raj in his paper The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management, "chest discomfort" is one of the common clinical features of the condition.

I get chest pain frequently when I am in Stages IV or V and only occasionally when I am in Stages II or III.  It can be a very frightening aspect of POTS and OI because although you may have experienced the same pain many times in the past, there can be a nagging doubt in the back of one's mind that says "OK this time it's really a heart attack"

Over the years I have asked a number of cardiologists and general practitioner MDs for an answer as to what causes the pain and I always receive the same response.  (See picture on right.)

That is until I asked two experts; our very own Dr. B. Levine and a Dr. Klabunde, Associate Professor of Physiology at Ohio University who has a cool website called which has lots of interesting and colourful pictures describing the cardiovascular system.

Why do POTS patients have chest pain?
Answer #1 from Dr. Levine
I find this a rather comforting response without being a definitive answer to the question. The response refers to the fascinating theory of "hyper-vigilance" which makes POTS patients sound like people who weep over stubbing their toe or getting splinters in their fingers....
"This is a very difficult question and I must admit that I am not certain of the answer.  I am quite confident that it is not heart pain though, at least in the vast majority of POTS patients.  I do have to be cautious however since every person is an individual and there may be unusual patients with coronary anomalies (when the coronary arteries are in the wrong place; associated with ~ 15% of deaths during sports in young people), genetic abnormalities of cholesterol metabolism (such as familial hypercholesterolemia), or even true coronary spasm (constriction of the heart arteries, either in the large or small blood vessels; this latter is also called "syndrome X" and in some women is associated with a reduced ability to increase blood flow in the microcirculation of the heart). However most POTS patients are previously healthy young women with normal coronary arteries, and ECGs, even during chest pain virtually always fail to show any changes of myocardial ischemia/injury, such as might be seen with coronary spasm. 
It is important to remember that there are lots of things in the chest other than the heart that can cause pain -- the esophagus, joints connecting the ribs to the sternum, chest muscles, lining of the lungs and heart, etc and these can be quite painful.   I think that most patients have reflux with esophageal spasm, or occasionally inflammation of the chest wall joints or structures. Most POTS patients have normal heart function on echocardiograms (all in my experience) and therefore no evidence that the heart is being injured or damaged. 
The Mayo clinic group have written about the "hypervigilance" associated with POTS and I believe this plays some role too.  Let me emphasize that this does not mean the patients are making it up -- rather that sensations that fail to rise to our awareness in most individuals, seem to be more acutely sensed by POTS patients.  To keep in line with our model, as a counterpoint to the "runners high" (associated with endorphin release and downregulation of endorphin receptors), we jokingly refer to this problem as the "couch potatoe's low" (reduced endorphin levels and dowregulation of receptors) and first noticed the phenomenon in our bed rest studies.  Procedures like pulling off of electrodes, or putting in IVs which were almost painless before bed rest, became nearly intolerable after bed rest, with one volunteer literally jumping off the bed after a blood draw."

Answer #2 from Dr. Klabunde
The Klabunde answer has an interesting theory but please also read Dr. Levine's reply following this answer.
"Chest pain can occur in patients with tachycardia because increased heart rate increases myocardial oxygen demand (see Furthermore, increased heart rate reduces the length of diastole (cardiac relaxation and filling) relative to the length of systole (cardiac contraction and ejection). Because most of the coronary blood flow occurs during diastole (see, tachycardia can impair coronary blood flow and therefore oxygen delivery. The bottom-line is that tachycardia can reduce the oxygen supply-demand ratio (see  This leads to myocardia hypoxia and anginal symptoms in some patients, particularly those who already have underlying coronary or heart disease."
Response from Dr. Levine to Dr. Klabunde's answer:
"POTS patients have normal coronary arteries and young, healthy people often get very high heart rates during periods of increased myocardial oxygen demand, LIKE DURING EXERCISE! This does not cause angina. In my opinion, as both a cardiovascular physiologist and clinical cardiologist, the chances of this pain being due to the heart's being starved of oxygen is virtually zero."
Creepy Heart Cartoon
So although many people with POTS and OI experience chest pain or discomfort, there could be variety of explanations as to why.  However, I believe that the two answers above serve to highlight the importance of a full diagnostic work up to rule out other possible conditions that may be causing POTS and OI symptoms such as chest pain.

They also serve to remind me that I prefer NOT to encourage any other conditions like heart disease to be troublesome along with POTS and OI...hooray for carrots (and other vegetables)

Choosing a Heart Rate Monitor for Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome (POTS)

Timex T5G971 Unisex Sports Personal Heart Rate Monitor WatchI had received some emails asking which heart rate monitor I would recommend to use for POTS exercise training.  When performing Dr. Levine's exercise protocol for POTS or for other programs for POTS or OI, it is critical that all cardio exercises are performed within specific heart rate ranges with the objective to strengthen the heart muscle and improve cardiovascular performance.  Obviously a reliable heart rate monitor is essential to keeping a close eye on what your heart rate is doing.

Omron HR-100C Heart Rate MonitorHeart rate monitors are made up of two different components; the sensor and the receiver.  Sensors can be built into the receiver like the Timex T5G971 sport watch or they can be built into a separate chest strap sensor.

There are a few different types of wireless signals used by monitors which you should be aware of: the POLAR wireless signal is proprietary to POLAR and one of the first ever to be used for the purpose.  At a 5.3 Khz frequency it has a very short range and can be confusing at the gym when your heart rate signal gets mixed up with the guy next to you doing a marathon "spinning" session.   However, many gym equipment manufacturers have built POLAR receivers into their machines; a consideration if you work out regularly at a gym.

The newer standard is a digital 2.4 Ghz frequency.  Used by Nike+ and POLAR Wind in a proprietary format, it is also available in an open standard called ANT+ that allows for interoperability between devices such as the iPhone or other smartphones.  The 2.4Ghz ANT+ also is a low-power consumer so you don't have to change batteries nearly as often as the POLAR 5.3Khz models.

What I look for in a heart rate monitor
#1  Clarity of the Display
When I am on the rowing machine gasping and panting, I prefer not to have to squint at a tiny display to see what my heart rate is doing.  A large visible screen that can be easily read when eyes are full of perspiration is important.

#2  Will work when wet
Garmin Unisex HR Monitor Waterproof Soft Strap Color: BlackIn the summertime, I love to do my cardio in the pool. Finding a monitor that works reliably when swimming is a challenge. Water can get in between the sensor and skin to interrupt the connection which is a nuisance when you're mid-workout.  In my experience, a tightly fitted chest strap sensor works better than an all-in-one for pool use.

#3  Compatibility
Garmin Heart Rate Monitor
If you work out in a gym then the cardio equipment you are using could be helpfully capable of receiving a heart rate signal.  Sometimes you can see  a "Polar" logo on the equipment's control panel or you can ask the gym management if their equipment is capable of receiving a heart rate signal and if yes, then from which manufacturer.  Watching your heart rate on the machine you are using can be very convenient.

Digifit Connect 2 Heart Rate Monitor Transceiver for iPhone, iPod touch and iPad | Requires an ANT+ compatible sensor and Digifit Full Functionality App (both sold separately)For Apple Junkies you can get an ANT+ transceiver for the iPhone or iPad and with an ANT+ chest strap monitor you can not only display the heart rate on your phone or iPad but also can input your heart rate data into the cool "DigiFit" software available on iTunes.

Next month I will be purchasing the Apple transceiver to go with my iPad and iCardio app from DigitFit.  According to the developer, iCardio can:
"turn your iPhone, iPod touch or iPad into a heart rate monitor and fitness computer. Using Digifit Connect and a heart belt, iCardio tracks BPM, calories, zones and much more."
Exciting! Hopefully with DigiFit I will be able to closely track my incredible improvement in cardio performance over time.

Day 26 of Dr. Levine's Exercise Protocol (A.S.)

Feelin' Gooood.  I am still very tired after performing the exercises though.  Right after the exercises I am wobbly and dizzy, then, for the next 15 minutes or so I am ok.  The fatigue hits 20 minutes after finishing the exercises and sleep is an immediate necessity.

Diet is also being carefully attended to.  I am trying to eat at the same regular intervals everyday - no caffeine, no sugar, enjoying foods that are lower on the glycemic index and organic, whole foods when possible.

Soldier on!

Exercise Intolerance and Postural Orthostatic Tachycardia (POTS) or Chronic Fatigue Syndrome

If I had a nickel for every time someone with POTS, OI or CFS said "I can't exercise because it triggers severe fatigue" I would be a thousandaire by now!

Unfortunately, exercise intolerance appears to be a common condition associated with POTS and OI.  It even brings up the "chicken and egg" question for Chronic Fatigue patients with POTS: is it POTS with exercise intolerance or Chronic Fatigue Syndrome with POTS?

Conditions/circumstances which can exacerbate Exercise Intolerance:
  • In Stages II to IV any cardio exercises which get my heart rate up higher than 160 (even  >140 bpm can be a problem)  
  • Exercising standing up (treadmill, elyptical, walking)
  • Anaerobic exercises (strength training) 
  • Putting laundry away, walking to the other room if I have been laying prone on a bed or in a wheelchair.
Is Exercise Intolerance a result of a weak cardio vascular system?
It kinda looks that way!  As discussed previously in this blog, prolonged weightlessness in space can also cause POTS-like symptoms in otherwise healthy persons.  Dr. Levine and his team's work with NASA appears to have led them to develop the treatment protocol for POTS to address the similar symptoms associated with prolonged weightlessness, bedrest, POTS and OI.

According to Jack H. Wilmore, David L. Costill, W. Larry Kenney in their book "Physiology of Sports and Exercise":
In a microgravity environment, the reduction of loading leads to dramatic losses in muscle mass and strength, osteoporosis, and exercise intolerance at rates that mimic those seen in spinal cord-injured patients.
If a person has POTS, OI, Chronic Fatigue Syndrome they are at risk of exacerbating their symptoms through their own inactivity (reduction of loading?).  The evidence is clear that periods of prolonged inactivity or bed rest causes:
  • the heart muscle to shrink (yipper!!)
  • a reduction in blood volume
  • exercise intolerance
This is the "Catch 22":  If someone suffers from exercise intolerance upon exertion yet inactivity causes or makes exercise intolerance worse how do you break the cycle?
Speaking from experience it can be done but with effort.  I described my first experience with the POTS treatment protocol developed by Dr Levine and his team where, for the first month or so, I would have to rest for a few hours after each session and doing the exercises was really tough.  It took a month or two before I started seeing results.  I did not feel better right away.  But I did feel better, dramatically better by the third month.  I endured the fatigue, the exercise intolerance, in order to achieve long-term gain.

What is the effect of exercise on the heart and blood volume?
  • the heart muscle gets bigger (stronger)
  • blood volume is increased
I am not suggesting that POTS, OI or CFS is caused by inactivity or de-conditioning.  I am suggesting that de-conditioning or inactivity can make POTS, OI or CFS symptoms worse.

As a final thought, when embarking upon an exercise regime to treat the symptoms of POTS, OI or CFS please remember that there are exercise programs which have been found to be more effective than others.

Postural Orthostatic Tachycardia Syndrome and Autonomic Storms

I just realized that on my 5 Stages of POTS post, I referred to something experienced in Stage V as an "autonomic storm" and I am concerned that I am using the term incorrectly.  After doing some cursory research, it appears the term is used by medical professionals but it is used to describe something that happens to people after cardiac arrest or after a traumatic brain injury.

However, I did find a reference in Harrison's Practice which states:
Autonomic storm is an acute state of sustained sympathetic surge that results in variable combinations of alterations in blood pressure and heart rate, body temperature, respiration, and sweating.
I am not alone in having what may be incorrectly described as autonomic storms.  I have read a number of posts and comments by patients with POTS or OI who have also described having them.  My experience with the nasty things is confined to when I am in the worst stage of POTS or Stage V: I am unable to stand, or even sit up, my vision is regularly disturbed, chest pain, frequent migraines and my hands and feet hurt.

If you have POTS or OI perhaps you have experienced one of these "autonomic storms" too:

  • body temperature goes up and down
  • what feels like a large quantity of epinephrine being injected into your system (I have gone into anaphylaxis so know what this is like)
  • tachycardia
  • chest pain
  • electric shocks up arms and legs
  • heavy perspiration (ladies don't sweat) to the point of soaking the bed clothes
In short, it is a totally dreadful state to be in.  In my case, the episodes would pass after a half hour to an hour.  I can say, however, that once I started Dr. Levine's protocol and progressed from Stage II/IV, I no longer experience autonomic storms. 

Can Autonomic Storms be Treated?
I have never been treated or have asked to be treated for autonomic storms.  There are protocols I believe for the treatment of Autonomic Dysfunction Syndrome in patients with traumatic brain injury but whether or not the same medical interventions would be proper or effective in patients with POTS or OI experiencing the condition described here would be a really good question for a specialist.

Day 21 of Dr. Levine's Exercise Protocol for POTS (A.S.*)

Hooray!! Feeling great, although my triceps are sore.  Was up early today cleaning away the debris from our dinner party last night which included a trip down someone's memory lane listening to Annette Funicello records (before MY time).  They say as you get older, memories from the distant past become clearer: our guest was able to enthusiastically recall every word to Annette's famous rendition of "Pineapple Princess."  

Beach Blanket Bingo and POTS...I would never have been able to do the "mashed potato" two weeks ago!  Now that's progress.

*A.S. = After Sausage

Day 17 of Dr. Levine's Exercise Protocol (A.S.)

It has been 17 days since I started the Exercise Protocol for the second time. I have improved much more quickly than the first time around, probably because I wasn't as symptomatic when I started. I also require less time for recovery which is great!

17 days ago I was between Stages III/IV. I am quite sure that if I had not started the protocol again I would have been in Stage IV or even V by now instead of an improving II/III.

(it is SO much easier to describe symptoms in terms of "Stages" and it also sounds less like whining too!)

Today on the schedule is 50 minutes on the rowing machine: 10 minutes of getting my heart rate up to 120bpm, 30 minutes of >120bpm and then a 10 minute cool down. Also on the schedule: watering baby basil plants and making marmalade from Moro oranges (yes, I know, marmalade is NOT on the diet. I intend to give it all away as gifts ;-)

I am also ensuring that sodium intake is high, sugar, caffeine and foods high on the glycemic index are avoided(including marmalade on toast...sadly) and 3+ litres of water consumed.

Postural Orthostatic Tachycardia Syndrome and Hormones

I recently wrote a post about a study on POTS and Menstruation which examined the link between the follicular phase of the menstruation cycle and worsening of POTS and OI symptoms.  What the study serves to highlight is the link between our hormones, renal-adrenal activity and the symptoms of Postural Orthostatic Tachycardia and Orthostatic Intolerance.

Should we all go racing out to the local pharmacy to find hormone creams to try to manage the ups and downs of our hormones?  Well,  you may want to read a previous blog post "To Use or Not to Use Medications"; which explores whether by interfering with the body's natural adaptive ability we may run the risk of further complications.

If you have POTS or OI you may be extremely sensitive to caffeine, drugs such as cold medication and even certain substances in make-up and personal care products.  In my case, I am also very sensitive to birth control pills to the point where I decided, after 3 months on a "low-dose" variety, to discontinue use.

Three "Ifs"

  1. If we know that hormone levels can effect our renal-adrenal activity and increase/decrease POTS/OI symptoms,
  2. If we are concerned that interfering with our body's natural adaptive capability through medical interventions could add further complications, and
  3. If we know that we are very sensitive to medications (such as birth control pills), then...
...we may want to proceed with extreme caution when looking at using synthetic or bio-identical hormones.
Too Late?
Well guess what?  There may already be significant interference with our body's hormones. See this PDF from the Institute for Agriculture and Trade Policy called "Smart Guide: Hormones in the Food system".  The paper describes a number of hormonal contaniments which are now in our food system such as:
  • Hormone growth promoters given to food animals
  • Hormone-active pesticides sprayed on food crops 
  • Hormone plastic additives in food packaging
  • Hormone disruptors that build up in the food chain - e.g., brominated flame retardants (PBDEs)
Removing Hormonal Contaniments may be Beneficial?
 There appears to be more and more research being performed to examine the effects on humans of hormones in our food supply.  While government regulators and agricultural lobby groups fight it out, I am playing it safe.
Recommendations from the IATP for reducing the amount of artificial hormones that we ingest:

  1. Eat low fat meats and dairy products.
  2. Eat certified organic where possible
  3. Avoid pesticide hormones (peel your fruits)
  4. Use hormone-free cans and bottles (instead of plastics)

Could be good advice for anyone whose condition may include sensitivity to hormone levels.  ;-)

GoDaddy ate POTSRecovery!!

For those of you who tried to access this blog over the last day or so OR who have tried to send an email to please be advised that GoDaddy ate this domain.

However, after an email or two to GoDaddy president Mr. Adleman they rectified the situation and restored back to its rightful owner. The email will take a little longer to restore. ;-)

Five Stages of POTS and OI

My recent relapse (entirely due to neglecting my exercises) has given me some time to ponder the various stages of POTS and OI.  For example: I was in Stage I, thanks to Dr. Levine's exercise protocol, until the Sausage Incident.  After the Sausage (A.S.), and from neglecting my exercises, I progressed from Stage I to Stage III/ IV in three months.  

This is my own description of the Stages and they may be very different for you.  I would really like to hear from anyone who has something to add or who would like to comment on the Stages as I have them outlined here.

Why do I want to describe the severity of POTS and OI symptoms in terms of Stages?  It's just easier to say "I am in Stage III" as apposed to "Jeepers!! I feel dizzy and unsteady, exhausted and my feet hurt too from the blood pooling." 

5 Stages of Postural Orthostatic Tachycardia or Orthostatic Intolerance
Stage I
Dizziness during follicular phase, when fatigued or in extreme heat.
Stage II
Dizziness or difficulty standing during follicular phase, when fatigued, in extreme heat or during periods of prolonged standing, blood pooling "pink feet",cognitive difficulties.
Stage III
Frequent dizziness, significant difficulty with standing for prolonged periods, fatigue upon exertion, blood pooling, cognitive difficulties.
Stage IV
Dizziness and difficulty standing for short periods, chest pain, cognitive problems,  blood pooling,  fatigue upon exertion, occasional migraine.
Stage V
Inability to stand, nerve pain, frequent migraines, visual disturbences, "autonomic storms", cognitive problems, frequent chest pain, severe fatigue.

RELAPSE!! or how avoidance ruined a good thing...

I have a terrible admission to make:  Last Christmas, there was an unfortunate incident with a Stadium Sausage (see previous blog post);  the Stadium Sausage, purchased at Foxborough during a Patriot's game,  inflicted a terrible revenge (it obviously was a Green Bay sausage) where a significant amount of fluid was lost over a short period of time.  From that incident and until recently I have not done any exercises.

Why?  A week after the sausage (A.S.) we were still "on holiday" and so endured cancelled flights, long airport delays and all sorts of other inconvenient travel adventures which made it challenging to find times to do regular exercises.

When we finally returned home I went back to work, which of course, I love. I also avoided exercising which I don't love so much.  A couple of weeks had passed since I had done regular exercises so I knew that a recovery time would be required after each exercise session and this would eat into my work hours.

What happens when I become"De-Conditioned"?
I avoided exercising and what happened?  I slowly became more "symptomatic" to the point of not being able to work at the point where I had no choice but to repeat Dr. Levine's exercise protocol from the very beginning, increase the salt in my diet and forget about being useful for a while.

I am now in the third week of the exercise protocol.  This time around I am recovering much more quickly from the exercises. Initially I needed 4 hours of receovery time, now I need an hour or two. I am already feeling the benefits of the program and can spend most afternoons doing a few hours of work or other activities.  I am easily fatigued and if I "over do it" the next day will be spent totally wiped out.

Since this is the second time I have done the exercise protocol I know that it will take some time but if I persist, more and more time will be recoverd for normal activities.

For some people POTS and OI is a transitory condition and for some it is a lifetime challenge.  If I want to stay functional then I must accept that my lifetyle must include exercise and healthy eating...forever.

Soldier on!

Woman "Reclaims her Life" from POTS!

Looking for further evidence that controlled exercise can alleviate symptoms of POTS and OI?  Check out this video Dr. Levine kindly forwarded to me of one of his patients who achieved wonderful results with the protocol.

This protocol may not work for everybody but BY GOLLY it may be worth a try.  Look and listen to this very articulate woman as she recounts her experience:

Orthostatic Intolerance and Chronic Fatigue Syndrome (CFS)

Anyone newly diagnosed with POTS, OI or CFS is totally entitled to feel confused about the causes and interconnection between the three conditions.

In fact, there are enumerable hypoptheses on what causes what. One interesting study is entitled "The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome" which appeared in the American Journal of the Medical Sciences by Schondorf and Freeman.  (Dr. Schondorf MD is a totally cool autonomic specialist working out of Montreal)

Since Dr. Levine's protocol is, so far, the only treatment that offers such dramatic improvement to POTS and OI patients wouldn't it be great to look at whether the same results are achieved with people who have POTS and Chronic Fatigue Syndrome? Or how about investigating the results in people who have OI and Chronic Fatigue?

Perhaps YOU have been diagnosed with POTS and/or OI and CFS. Would you be willing to try the protocol?  Hmmmm....

POTS and Menstruation

If you have POTS or OI (and you're female :-)  you probably have noticed that around the time of menstruation your symptoms get worse.  In May 2009 an interesting study was publsihed which looked at the link between a woman's monthly cycle and postural orthostatic tachycardia.

Wordily entitled "Menstrual cycle affects renal-adrenal and hemodynamic responses during prolonged standing in the postural orthostatic tachycardia syndrome." by Fu, VanGundy, Shibata, Auchus, Williams and Levine, the study examines why we may feel better in the Mid-Luteal Phase vs the Follicular phase of our cycle.  If you are horrified to think you had a follicular phase and didn't even know it, here is a diagram which should explain why you need not be alarmed.

Speaking personally, if I am symptomatic with POTS or OI going into my "Follicular" phase, I will certainly have difficulty remaining upright until the "Luteal" phase begins.

How was the Study Conducted?
Ten women with POTS and 11 control subjects ate a "constant" diet for 3 days prior to the trial. ( I am not what "constant" means...but it evokes an image of 21 women continuously grazing at a Weight Watchers buffet).  Their cardiac output, stroke volume, blood pressure, heart rate and peripheral resistance were measured along with their renal-adrenal hormones during periods of 2 hrs standing and while laying down.

Deciphering the Results
What the report on the study appears to be saying is that plasma renin activity was lower in the follicular phase versus the mid-luteal in both groups but even lower in the POTS subjects!  Both groups also felt like they were going to pass out more in the follicular phase.

The higher levels of progesterone and estrogen during the MLP phase  are associated with the production of more renal-adrenal hormones which improves blood volume...

...OR the more renal-adrenal hormone activity EQUALS less POTS and OI symptoms! Hooray!

Does this translate into practical guidance for managing POTS or OI?
Maybe.  There are theories out there which offer tips on how avoid activities which, over time, suppress the renal-adrenal hormone activity.  Consumption of caffeine, alcohol and sugar are said to be negative influences as well as unhealthy eating and crummy lifestyle choices.  Stress is also suggested as a negative.  Sounds like practical sense to me.

Exercise and POTS and OI

A couple of months ago I posted the report prepared by Dr. Levine et al which described the study and results of their work with POTS patients.  Since Dr. Levine's team first study they have expanded their investigations into a second study which includes approximately 300 patients.

What I find mystifying: 
1. There are people with POTS who read the study and immediately dismiss the findings because of the small number of patients involved.
My response: Regardless of the number of patients, the results for those few were significant.  Since there are very few reports examining treatments for this condition, wouldn't a study like this, published in the American Journal of Cardiology, give some hope to those who suffer?  I surely hope that my blog posts also serve as additional information to help people make an informed choice about their own treatment.

2. There are POTS sufferers who believe that exercise is contraindicated in people with POTS or OI.
My response:  If there is an underlying defect of the body then perhaps.  If the diagnosis is just POTS or OI then I have yet to see ANY EVIDENCE that exercise is contraindicated.

Also, not all types of exercise have the same effect on the body and some may make the symptoms of POTS and OI worse. The exercises, as indicated in the Levine Protocol, require that the cardiovascular routines are done in a recumbent position and are performed within specific heart rate zones.  As the body becomes stronger and adapts to the cardiovascular challenges, the exercises can be performed upright.  As a long time POTS and OI sufferer I know what I can and what I can't do.  If I am symptomatic and try to do cardio on a treadmill or elyptical (upright) then I will definitely suffer from exercise intolerance.

3. Many POTS and OI sufferers assume that medications prescribed by doctors to treat POTS or OI such as midodrine or florinef are safe and/or effective even in the long term.
My response: There are scant studies on the effects of drugs to treat POTS or OI.  One study for Midodrine (Kapoor 2003,) which is cited frequently, was with 16 patients I believe.  All drugs used to treat POTS and OI have side-effects.  All of them.

My personal choice for treatment is diet (lotsa salt), exercise and healthy living as I believe the unknown, long term effects of drugs could be harmful.  My personal choice is to help and support my own body's ability to live with this as apposed to interfering with it.

My personal choice aside, please don't discount exercise as a potential treatment for Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance!

What I really love about having POTS and OI

  1. I am not dying from it
  2. It doesn't cause unsightly skin rashes
  3. I get to sit down during events where everyone else has to stand
  4. I can eat lots of salt without worrying about my blood pressure being "too high" (love the salt)
  5. "Brain fog" is a legitimate excuse for not finishing a crossword puzzle 
No matter what your own personal reasons are for loving POTS, the important thing we should remember is that the condition can be preferable to other, more hideous, conditions. ;-)