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

Dr. Levine's Study: Cardiac Origins of the Postural Orthostatic Tachycardia Syndrome

Now available on POTSRecovery.com!!  Yessirree, after receiving hundreds (yes hundreds) of emails requesting a copy of the study I have decided to post it on the blog in order to make it more convenient for readers to find it.

You can find it HERE

Here are the credits for Dr. Levine co-authors: Qi Fu, Tiffany B. VanGundy, M. Melyn Galbreath, Shigeki Shibata, Manish Jain,Jeffrey L. Hastings, Paul S. Bhella.

What you will not find in the study
You will not find details on the actual exercise protocol developed by Dr. Levine and his team.  To obtain the details on his protocol I encourage you to contact Dr. Levine's research team (info below).

However, exercise and its benefits to patients with postural orthostatic tachycardia or orthostatic intolerance is reported in other publications as well as in articles previously published about Dr. Levine's research.  Many of which I have linked to from this blog.

Why I posted the study or in recognition of forgetfulness
It is generally understood that I am not always prompt in responding to emails and I also sometimes forget to respond to, or think I have already responded to, an email when in fact I have not. (see previous post on Brain Fog)

Don't be discouraged though.  I generally love to hear from people who have happened upon this blog.

EXCLUSIVE: the "Grinch Syndrome" or Happy Holidays from Dr. Levine

Two sizes too small! Yes, that is a characteristic of the heart of a POTS syndrome sufferer according to Dr. Levine in his research paper "Cardiac Origins of the Postural Orthostatic Tachycardia Syndrome."  Although I don't consider myself a "Grinch", I have, on occasion, taken candy from my children (particularly chocolates and gummie-worms).  I have also put antlers on my golden retriever.

During this  time of year when the generosity of spirit is linked to the size of your heart, the "Grinch Syndrome" moniker can be a drawback to POTS sufferers looking for acknowledgement for spreading cheer and happiness.

Since Dr. Levine's controversial term of the "Grinch Syndrome" has lit up some folks who have POTS or OI and in true holiday spirit, here is Dr. Levine's response to their anti-Seuss sentiment. (Prior to reading Dr. Levine's defense of the term "Grinch Syndrome", I recommend you watch this short video in order to get into the Grinch mood.)



>>The vast majority of our patients who hear the term "The Grinch Syndrome" laugh and take comfort in the spirit in which it is presented. On the other hand, some patients have taken offense at our use of this term and I want all POTS patients to know that we mean them no ill will. As I often tell my patients, the term "POTS" simply puts a label on the fact that the patient's heart beats fast when they stand up. The "Grinch Syndrome" focuses attention on what we believe to be a key underlying mechanism -- namely that the heart is "two sizes too small."

It is important to realize that a routine echocardiogram will not pick this up as the mass of the heart is challenging to measure and not a standard clinical variable. Based on simple population statistics, 2.5% of all the women in the world will have a heart that is more than two standard deviations below the mean -- the definition of "normal" in medicine. We believe that it is these women who are most at risk of getting POTS symptoms which can be induced incredibly quickly by even a brief period of bedrest.

We have never felt that a single POTS patient was lazy or irresponsible -- if it were easy to treat POTS with exercise, everyone would do it!! However when we apply a highly specific training program developed for use in astronauts (2/3rd's of whom have POTS like symptoms when they come back from space by the way -- it is a "gravity problem"...) focused on making the heart bigger, the vast majority of patients feel dramatically better and many are "cured". I should emphasize though that maintaining fitness is a life-long goal for our POTS patients and we encourage them to consider exercise as part of their personal hygiene.

Ultimately though, I would like to emphasize that humor is a powerful tool for healing, not only for patients with POTS, but almost any disease. We treat all our patients with the deepest respect, and are acutely aware of how debilitated they are, which we take very seriously. Mark Twain once said that "Humor is mankind's greatest blessing"; we believe it is an essential part of the healing process and hope that all of our patients smile when they think of The Grinch, and then go off to exercise!<<

I hope this response from Dr. Levine is helpful to all my fellow Grinches!!

Stomach flu and POTS - An Emergency Guide

So you have come down with the Stomach Flu, gastroenteritis, or food poisoning. The nausea, vomiting and diarrhea is unpleasant(and unbecoming) to say the very least but poses real dangers for someone with POTS or OI. Losing so much fluid in so little time can be devastating to someone with POTS where chronic low blood volume or hypovolemia can be present.

Has this happened to me?  Why yes, it has happened to me.  And at the most inconvenient moment...of course.  We had a wonderful holiday planned: a few days in Boston to watch a Patriot's home game and then a week long trip south to enjoy the sun and sand.  However, the stadium food at Foxborough had a different plan for me.  I think it must have been the bratwurst sausage with the fried onions, peppers and all the fixin's.  As soon as the game was over (the Patriot's won) I started feeling the effects.  By the time we reached the hotel the dams had burst and I was one with the hotel toilet bowl.

My greatest fear was that the sudden loss of fluids would trigger a relapse of the most severe POTS symptoms; chest pain, inability to sustain blood pressure when standing, total brain fog etc etc.  So what could I do to prevent a relapse?

This was my plan:

  • Endured 6 hours of the vomiting and diarrhea (until it started to subside).  Took small sips of bottled water.  No sugary drinks.
  • Took a chewable Dimenhydrinate tablet  (Gravol or Dramamine) right after vomiting without water.  I slowly nibbled at the tablet and let it dissolve in my mouth.  At this point my stomach was so sensitive that if I took the tablet with water it would have been returned immediately
  • Waited until 2hrs after last toilet bowl exercise to start sipping water. 250ml per 1/4 hr
  • Waited another 2hrs to start drinking warm chicken or vegetable broth with a high sodium content (800-900mg per litre) 250ml per 1/4 hr.
  • As long as the stomach is quiet, start increasing the liquids.
Other pointers:
  • I avoided taking Imodium as it decreases the intestinal activity unless I had sustained diarrhea for longer than 6hrs or unless a doctor suggested I take it.  With POTS or OI you may already suffer from low motility so the imodium may not be such a good thing.
  • I avoided sugary drinks as they can make matters worse
  • I avoided milk drinks or substances as they also can make matters worse
  • Start the lots salt diet for 2 days following the episode
 This plan was good for a 24hr flu variety of stomach irritation and not for a more serious stomach problem.  If my condition had become worse or if the symptoms had continued unabated for more than 24 hrs then I would have sought emergency medical attention.  With POTS or OI you cannot allow yourself to get severely dehydrated.  When in doubt call your doctor and err on the side of caution!!

More on Exercise and POTS

I thought I would write a post about exercise and POTS.  I was very incapacitated with POTS and OI until I started an exercise protocol developed by Dr. Levine and his team in Texas (see this blog for further details and contact info).  Two months after starting the protocol I was more functional; able to walk around unaided, could perform exercises without the post-exercise crushing fatigue.  After four months I was 80% better.

I am much better now but I can suffer setbacks if I am not careful about maintaining sufficient fluid intake, managing my diet, exercise and getting enough rest.  My migraines return if I stop taking my daily riboflavin.


Not just any exercise routine will do.  The protocol prescribes recumbent exercises performed while keeping your heart rate within specific ranges for specific periods of time.  If you have tried an exercise regime without success in the past and it made you feel worse DO NOT FEEL DISCOURAGED.  To train your body back to a more functional state does require adherence to Dr. Levine's principles as described in the protocol.

For those of you who want to get more information on Dr. Levine's exercise protocol I encourage you to:
  • get in touch with Dr. Levine's team
  • research Dr. Levine and his previous publications
  • read this blog (not just the last couple of posts) including the pages on Lotsa Salt and Exercise!
Best of luck and please remember...it CAN get better...a lot better :-)

Happiness is not worrying about POTS & OI

Hi Folks
Yes, it has been quite some time since I last posted on this blog.  My apologies to those of you who thought I had some terrible relapse and so was incapable of writing.  I have, in fact, been feeling very well.  Since undertaking Dr. Levine's exercise protocol I have been gradually improving to the point where I feel (mostly) completely normal.  Since about 3 weeks ago I have been able to put in a full day's work.

So how have I been spending my time?  Primarily on a charity fundraiser to raise money for military wounded and their families. I am pleased that this black-tie event for 400 people and $200 a plate is now sold out.  Yay!

As Dinner Chair for the event I will have to say a few words of thanks to all of the people who have made the dinner a success.  I only hope that the adrenalin rush of speaking in front of such a crowd does not cause me to faint.  ...it has been known to happen.  I don't do adrenaline very well which I am sure other persons suffering from POTS can relate to.

I do intend to continue my writing on this blog and I thank you for reading...I hope you find it useful, amusing, annoying or at least something.  Stay tuned for more Yellow Wiggle adventures as I WILL follow up on Greg's offer to be interviewed!

Working with your doctor to find out if you have Postural Orthostatic Tachycardia Syndrome

You have become ill and your doctors are completely mystified as to what the condition could be.  You have seen your family doctor and maybe the cardiologist and neurologist too. Your symptoms may include:

  • dizziness upon standing
  • fainting or near-fainting episodes
  • chest pain
  • fatigue
  • rapid heart rate when standing
  • migraines
  • visual disturbances
  • brain fog
  • nerve pain
  • purple feet when standing
  • brain fog (did I say that twice?)
If this sounds familiar, you may indeed have Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance.  Some medical papers report their are over 500,000 people suffering from these conditions in North America.  However, the conditions are not widely recognized by the medical community.  If you think you have POTS or OI here are two medical papers that may help you and your doctors figure out what is wrong.

The first paper is entitled "Autonomic Neuropathy" authored by Arbogast, Miles and Katirji. (thank you to EJ for bringing this to my attention.)  It discusses various conditions which may effect the autonomic nervous system, diagnostic procedures, differential diagnoses and treatments.  Often patients experiencing symptoms of POTS or OI are examined for autonomic dysfunction.

This paper can be found here:  http://emedicine.medscape.com/article/1173756-print

The second paper is simply called "Postural Tachycardia Syndrome (POTS)", authored by Low, Sandroni, Joyner and Shen.  This paper discusses POTS and OI specifically and describes the various flavours of the conditions, evaluation and diagnoses and management.
This paper can be found here: http://www.medscape.com/viewarticle/705183

To help your mystified doctors out, you may want to print out and bring along these papers to your next visit. They could save you a lot of unnecessary tests and grief.

EXCLUSIVE: Yellow Wiggle, Greg Page, agrees to Interview with POTSrecovery

Handing over the Yellow Wiggledom
to Sam Moran
You heard it here first folks! I have received an email from Greg Page and he has kindly agreed to share with us some of his story on living with orthostatic intolerance.

He has asked that I prepare a list of questions for him. Which I will. If you have any questions that you would like me to include please send me an email at liz@potsrecovery.com.

Greg Page left the popular kids' singing group, the Wiggles, November 30 of 2006 due to illness.  Subsequent to his departure it was found out that he suffered from Orthostatic Intolerance.  Like many of us with POTS or OI, the diagnosis wasn't straighforward:
"We don't know what's wrong with him - he's had a lot of fainting spells, he's had a lot of tests done to work it out," she told the newspaper's online edition. "I spoke to him this morning and he said 'Yes, I'm tired, but the doctors haven't put a name to it yet, they just don't know.'" Dianna O'Neill on Greg's illness as reported in the Daily Mail on Nov 27/06
Buy your very own
Yellow wiggle shirt!
I can certainly relate to someone whose fainting spells have mystified the medical community.  

I am not sure if Mr. Page realizes how helpful it is for people with this not-very-well-known condition to be able to refer to someone famous who also has the condition.  It somehow legitimizes the condition for some people, particularly the under 12 crowd.

Update on the Wiggle Challenge

At the kind suggestion of readers I have sent an email to Mr. Greg Page through his website.

I have asked if he would consider doing an interview for the blog.

Why do I feel like paparazzi?

The Yellow Wiggle Challenge

Since I first started writing about the Yellow Wiggle as being one of the most famous sufferers of Orthostatic Intolerance I have received many teasing remarks and have been the (wiggly) butt of many a joke.  A close family member even tried to do a school project entitled "the Yellow Wiggle Disease" but abandoned the project because it didn't sound serious enough.

I have decided show these people just how SERIOUS this condition is and that it is NO LAUGHING MATTER. I have decided to rise to the challenge of finding Greg Page, the original Yellow Wiggle and getting him to agree to being interviewed by yours truly on his experience with Orthostatic Intolerance and then post the interview on this blog.

Anyone with information as to his whereabouts is asked to please contact the author.

Master your Inner Couch Potato

I can think of no better candidate for a Couch Potato than a person with Postural Orthostatic Tachycardia Syndrome or Orthostatic Intolerance.
  1. Exercise can trigger unpleasant "exercise intolerance"symptoms such as extreme fatigue
  2. Walking and even standing can produce near-fainting or fainting episodes, rapid heart rate and nausea
  3. Holding your hands above your head can make you pass out - yup, it's happened to me
  4. It can be physiologically proven that lying in a La-Z-Boy recliner makes you feel better
  5. Everyone tells you to increase your salt - Bring on the All-Dressed Potato chips!!   
In my recent prowling around the various dysautonomia message boards and POTS sites I have noticed that there are a fair number of POTS and OI folks discussing exercise as a potential treatment.  What was suprising was that many people are arguing about the merits of exercise. 
"Intellectually I acknowledge the potential benefits of exercise but, quite frankly, I don't think its for me"
I can choose not to exercise because its too much work but I can't really argue about its merits.  If they had an exercise "pill" for example I would probably be trying to get on the drug trial list.  If I lived in the 1800s I would have purchased one of these medicated undergarments to "reduce the flesh".  Pills and rubber garments are far easier than exercise.  I wrestle with my tendencies all the time.

However, it is irrefutable, exercise is good for you.  There are innumerable studies which show that moderate exercise is beneficial unless you have some sort of disease that absolutely does not permit physical activity like fragile-bones disease.

I have chronic POTS and OI due to some mysterious cause that the doctors may never discover.  One of the ONLY treatments research has shown to dramatically improve the symptoms of patients with POTS is exercise.  So I exercise regularly and eat a fairly decent, healthy diet with extra salt and fluids.  I expect that I will continue to experience relapses due to unknown reasons but I also know that I will be stronger and more able to cope with any relapses if I keep exercising and maintain a healthy weight.

There are times, like today, when I want to sit on the couch and eat a whole bag of Lays Potato chips with dip.  There are times when I want a giant fudgey.  However, no amount of fudgies in the world are worth my health and being able to live a reasonably full life. So I get off the couch and put away the bag of Lay's until next week, forget about the fudgey and I go exercise.

My 1972 Parisienne Couch Potato Car


My very first car was a pale yellow 1972 Parisienne which I purchased for a grand total of $300.  The car was lying in a farmer's field for a couple of years prior to the transfer of ownership.  It had been lying there so long, in fact, a tree was growing out of the front of the radiator grill.  The horn worked but sounded like an old man with smoker's cough.  The engine worked too...most of the time.  It was so plugged with (gunk?) that it took about 2 minutes from a standing start to get to 20mph.  The brakes weren't bad either but it was best to finish your take-out coffee before you needed to stop. 

You would expect a few troubles with a car that been lying around in a farmer's field for 2 years, right?  With regular oil changes, clean gasoline and some new spark plugs the car's drive improved.  It never lost its smoker's cough but it lasted me for another 3 years until I sold it for a modest profit.

When you have POTS is easy to feel like a car in a farmer's field.
:-)

The Grinch Syndrome

Dr. Levine's Exercise Study for POTS now published in the JACC.

The paper entitled "Cardiac Origins of the Postural Orthostatic Tachycardia Syndrome" coins a new descriptive term for POTS; The Grinch Syndrome.

(Dr. Levine has sent me a copy of the publication for this blog. Email me if you would like a copy.)

Dr. Levine's paper talks about how patients diagnosed with POTS or OI can have hearts that are too small.
"Results from our laboratory have shown that there is a sex-specific difference in cardiac size and mass even in healthy humans and that women have a smaller (and therefore, less distensible) heart compared with men (2,54). It is possible that such a sex difference is exaggerated in POTS patients. This notion is supported by a recent study of Miwa and Fujita (8) showing that a considerable number of chronic fatigue syndrome patients had a small heart, as assessed by roentgenography and echocardiography. POTS is a frequent finding in patients with chronic fatigue syndrome (55). It is highly likely that the small heart contributes to the development of POTS and probably should be included in the genesis of this syndrome."
So what does that mean to the average POTS or OI sufferer?  Exercise designed to improve the performance of the heart muscle could be THE MOST IMPORTANT FACTOR contributing to a patient's recovery.

Start Exercising in a Recumbent Position
In this study, patients started with recumbent exercises such as rowing and the recumbent bike.  They then gradually moved to performing exercises in an upright posture.  They also combined their cardio training with weight lifting in order to progress the patient's conditioning levels.

Significant Findings from the Study

"1) cardiac size and mass and blood volume were much smaller in POTS patients compared with healthy sedentary controls; 2) HR was greater, whereas stroke volume was smaller, in patients than in controls during upright posture; 3) the function of the autonomic nervous system was intact in POTS patients; and 4) exercise training increased cardiac size and mass, expanded blood volume, and thus improved or even cured POTS syndrome. These results suggest that POTS per se is indeed a consequence of deconditioning (i.e., cardiac atrophy and hypovolemia) and that carefully prescribed exercise training can be used as a nondrug treatment for patients with POTS."
If you have POTS then start NOW!
Ten out of the nineteen patients in the study no longer met the criteria for POTS after finishing the three month program.  They were effectively cured.  If you had any doubts or worries about starting to exercise while sick with POTS then dismiss them, talk to your doctor and get on the rowing machine.

Thank you for helping me feel better
Contributors to the study report are: Qi Fu, MD, PhD, Tiffany B. VanGundy, MS, M. Melyn Galbreath, PhD, Shigeki Shibata, MD, PhD, Manish Jain, MD*,,Jeffrey L. Hastings, MD, Paul S. Bhella, MD, and Benjamin D. Levine, MD

Share Your Story about Living with Postural Orthostatic Tachycardia and Orthostatic Intolerance

Everyone who has POTS or OI or who has a loved one with POTS or OI has a very special story to tell.  Each of us have had challenges, successes, highs and lows in living with this condition.  Would you be prepared to share your story?

Why do I ask? I am working on a new website for people who suffer from POTS and OI.  Slowly but surely I have been compiling all kinds of research, news articles, and other information that may be helpful to people who are struggling to feel and to live better. (kinda like this potsrecovery.com blog but better organized...!)

What is missing from the new site are stories from real people like you.  I would like to post these stories, anonymously if you prefer, in a special section where we all can connect.

Would you like to contribute?  Are you ready to contribute?  If yes, send me a confidential email to liz@potsrecovery.com.  I will not post your story without your express permission.

Here are some suggestions on what you might want to include in your submission:

  • When did you first get ill
  • Did an event, illness, injury precede getting sick
  • Do you have any theories about what may have caused your illness
  • What are your symptoms
  • What is the most annoying, debilitating symptom
  • What treatment are you on, why?
  • What treatments have you tried, why?
  • Is there any treatment you would like to try
  • What has been your greatest challenge
  • What has been your greatest success
  • What does your future look like
  • Do you have any advice 
I hope you do decide to share and if you would like updates on the new website just say so in your email

-Liz

Going into "Maintenance Mode" with Dr. Levine's Exercise Protocol

I have now passed the three month mark of Dr. Levine's Exercise Protocol for postural orthostatic tachycardia and orthostatic intolerance.  I am feeling much better than I did at the beginning.  So what's next?

At the end of the three months I started doing the Tony Horton's P90 exercise DVDs.  I like the power yoga, plyometrics and the varied weight routines.  After two weeks of the DVDs I started to see some muscle definition.  However, I started to feel more symptomatic and my fatigue levels were going up.  WHAT A DRAG!!  In fact, I had to stop doing the DVDs and went back to the rowing and recumbent bike exercises.

Since I always wear my heart rate monitor when doing my exercises (!!!!) I noticed that during the routines my heart rate would vary between 100-165bpm whereas when I was doing the exercise protocol, my heart rate would be fairly steady within the target heart rate zones.

My Theory:  When my heart rate gets above >160, exercise intolerance sets in.

I emailed Dr. Levine's team in Texas to ask what my next steps were and they suggested I repeat month three of the protocol.  So that is what I am doing.  Recumbent cycle, rowing or swimming for the cardio portion and for the weight training, I am doing the P90 Sculpting DVD as it does not get my heart rate up too high (unlike the P90 cardio DVD).  My goal is to graduate from the P90 DVDs to the P90X Extreme. GRRrrrrrrrr I'm gonna be RIPPED!

What is HyperAdrenergic POTS?

For those of you who are new to POTS and OI, did you know there are several flavours of POTS?  Here is one:  HyperAdrenergic Postural Orthostatc Tachycardia

Onset:
Symptoms appear gradually and progressively over time. Thought to be a genetic disorder.

Symptoms:
  • increase in urine output after standing (what a nuisance!)
  • presyncope
  • fatigue
  • migraine headaches
  • palpatations
  • tremor
  • anxiety
  • cold and hands and feet

Clinical Findings:
  • orthostatic tachycardia
  • orthostatic hypertension
  • exaggerated response to isoproterenol infusions
  • significantly elevated serum catecholamine levels with serum norepinephrine levels >600 ng/mL (this was found in 29% of patients in a study)
Treatment:

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.
People who have been diagnosed with this disorder typically have other fmaily members who suffer from it too. I picture long line-ups for the toilets at family reunions.

Here is an interesting article on recent research on what genes may impact POTS...

Rowing for POTS - Is it really a better exercise?

I found this article written about rowing and why it is helpful.  Dr. Levine is quoted and his work on POTS is referenced.

Medical researchers are refining their knowledge about what keeps astronauts in space phsically fit.

By JSHERE
Benjamin Levine: We calculated or estimated that – in order to maintain the work of the heart while you’re in spaceflight – you’d need to do about 90 minutes of cycling every day to keep the heart at its pre-spaceflight level. But that also is a lot of work. It’s a lot of exercise.

That’s Benjamin Levine, a medical researcher working with the National Space Biomedical Research Institute.

Benjamin Levine: We looked to the sporting world and asked, which athletes have the biggest hearts, the densest bones, the biggest muscles. And that was a pretty quick answer: it’s rowers.

Levine said that rowing is a very unique exercise. He said it’s like a combination of weight training and endurance training. Plus the blood pressure goes up high with each stroke, so it’s a good, solid workout for the heart.

Levine’s recent study combined rowing with nutritional support for test subjects spending 5 weeks on bed rest to simulate the effects of reduced gravity on the body. And it appears the rowing regimen does keep the hearts, bones and muscles of astronauts fit, while cutting the time spent on exercise by more than half.

Benjamin Levine: I think that all astronauts would benefit from rowing, but that doesn’t mean that all astronauts will like rowing. Honestly, as long as you maintain the work of the muscle, it will maintain its structure and function.

Levine mentioned that this research relates to what doctors call the Postural Orthostatic Tachycardia Syndrome or POTS. This ailment primary affects young women, and it means that, when these women stand up, their hearts pound, they get headaches. The disease can be incapacitating. Currently, an exercise intervention – based on rowing – similar to that studied by Dr. Levine is being tested.

Special thanks today to the National Space Biomedical Research Institute – innovations for health in space and on Earth.

Our thanks to:
Benjamin Levine
Director, Institute for Exercise and Environmental Medicine
Presbyterian Hospital of Dallas
Dallas, TX

POTS Recovery given "Sugardoll Blogger Award"

I would like to thank the academy, I mean, the Fabulous Sugar Doll Blogger Lauren, from the bottom of my heart for this award. I would like to thank Jenny and Michael and Scott. And Rusty Hoe for your inspiration and I would also like to thank the talented people at Google for making my Blog possible. (sniff)

I wouldn't be blogging, let alone accepting this award, if it wasn't for two women; my mother, without her incredible job of listening to my complaints and my sister and her reminders to get real.(sob, more tears)

...and of course I must thank my golden retriever "Jack" whose humor, wit and slobbery kisses I just couldn't live without. Thank you (leaving stage)Thank you everybody!



OK in accepting this award I also agree to list 10 things about me:

  1. I had a secret crush on William Shatner when I was 12
  2. I dislike smoked oysters BIGTIME!
  3. My shoe size is 38 (7 1/2 cdn)
  4. I put highlights in my hair
  5. I get parking tickets more frequently than the average adult
  6. I always wanted to be an artist that composes and performs yoga mood music
  7. I once purchased a CD called "Greatest Hits of the 70s" from an infomercial ad at 4am
  8. I love sherbet fountains
  9. My motorcycle is a bright red Harley Davidson Deuce
  10. I find ant hills fascinating

Green Bay Student Megan Hermann overcomes Postural Orthostatic Tachycardia

Megan Hermann pushes through obstacles
Health problems spur Southwest senior to become a doctor

By Kelly McBride for the GreenBayPressGazette.com
For many high school students, getting out of bed in the morning is a chore. For Megan Hermann, it was nearly impossible.

Plagued by a mysterious condition, the Green Bay Southwest High School student suffered blackouts, severe vertigo and excruciating pain. Doctors finally diagnosed a rare disorder and gave Megan the tools to help manage her condition.

Fast-forward two years, and the 17-year-old continues to thrive. She still suffers bouts of illness related to her disorder — Postural Orthostatic Tachycardia Syndrome — but fighting it has only strengthened her resolve to help others in pain.
Megan wants to be a doctor — or, as she puts it, "I refuse to not be a doctor." Those who know her say her intelligence and drive will get here there, no matter what the obstacle.

Megan is one of 10 area students to be named to the 2010 Green Bay Press-Gazette Academic Team. These elite students are being recognized for their academic, extracurricular and community involvement throughout high school, and their potential to succeed beyond.

Exercise and Postural Orthostatic Tachycardia: Awww, do we have to?

If you were to poll patients who have been diagnosed with POTS or OI, how many do you think would say they exercise on a regular basis?  How many would say they believe that exercise is important to their recovery?  I don't know the answer but I bet there are quite a few people out there who have not heard about or read the studies which document the improvements patients with POTS or OI can experience after embarking upon an exercise regime.

Here are, for your edification and reading pleasure, some of the reports I have found on supporting the fact that exercise training is significant to the treatment and improvement of symptoms in POTS and OI:
If you have found any other studies or papers on this topic please let me know.  And I hope that if you are a sedentary person with orthostatic intolerance or postural orthostatic tachycardia syndrome you will read this material and judge for yourself whether getting up and exercising is worth the effort.   


Iodine and POTS...Whaaaaat?

In this blog I have talked quite a bit about my belief that proper nutrition is important to recovery from Postural Orthostatic Intolerance and Orthostatic Intolerance.  An additional factor that you may want to consider from a nutritional point of view is hypothyroidism; a condition where your thyroid gland is underactive.  

If you have been diagnosed with POTS or OI your doctor probably already checked you for thyroid function.  What the doctor and the tests may not have picked up is a mildly underactive thyroid which can be caused by inadequate iodine in your diet.  Iodine is required by the body for the synthesis of thyroid hormones.

Estimates from the World Health Organization suggest that 16% of people in the USA have <50 Median urine iodine, mcg/L which is considered a "moderate" iodine deficiency.

What are the symptoms of mild hypothyroidism? They include fatigue, weakness, memory loss, irritability, weight gain, dry skin, brittle hair and nails. cold intolerance, muscle aches.  Sound familiar?

I am not suggesting anyone with POTS or OI run out and buy iodine supplements but I do believe that ensuring that there is sufficient iodine in the diet is prudent.  According to the Food and Nutrition Board, the recommended daily intake of iodine for an adult older than 19 yrs is 150 mcg.

The following chart on iodine content in foods is from the Australian Government:



And important to note; low selenium may interfere with iodine and other trace minerals and low chromium levels may also affect the metabolism.

Advice to John on Dr. Levine's Exercise Program


The exercise program I have been on is very specific to treating orthostatic intolerance; developed by Dr. B. Levine who has performed significant research on POTS,OI and physiology.  The program lasts for 3 months and has very specific exercises for each day with some days off for resting.  Aerobic exercises must be done with a heart rate monitor so that the patient can ensure that their heart rate remains within the specified range for a specific period of time as prescribed by the exercise program...this is the 1ST KEY FACTOR to the success of the program.  The exercise program forbids training while upright or standing until the end of the 3 months.  All exercises are recumbent either using a recumbent cycle, swimming or, considered best of all, a rowing machine...this is the 2ND KEY FACTOR.

As far as I understand, there was an initial study with a small group of people with POTS/OI who performed the 3 months of exercise at Dr. Levine's labs.  I was told by one of his researchers that over 85% of participants showed dramatic recovery.  The study was then expanded to include 300 patients through-out North America (I am one).  Dr. Levine's research will be published in the next couple of months I believe.

If you are not experiencing the recovery you expect then I suggest you might want to try following the heart rate method as explained in my "exercise" page on the blog.  Also, if your diagnosis is confined to OI and/or POTS then you may want to consider weaning off the florinef and midodrine.  Participants in Dr. Levine's program must be off all meds.  When I started I was barely out of a wheelchair.  Dr. Levine's research as well as others seem to show that the body can adapt to sustaining appropriate blood pressure/heart rate/blood volume/arterial pressure through this managed "orthostatic training" combined with fluids and increased sodium.  However, it appears that people with chronic OI (like myself) must change their lifestyle to accommodate the physical training and diet needs of their body forever.

For me, nutrition has been critical.  I too avoid caffeine but I'l be d*mmed if I give up a nice glass of borolo now and then!  

I eat nutritious foods, organic when I can, and use supplements such as Greens+ because of the iodine, I also take vitamin D, B2, calcium w/magnesium, Omega 3 and a multi-vitamin.

Going off the meds, I would think, could be a sticky problem for you.  On one hand they may inhibit your body's ability to adapt enough to recover but on the other hand your symptoms could dramatically worsen while you are weaning off them.  

Best of luck with this and if you do choose to change your regime please let me know what happens.

Heads Up or Heads Down to treat Orthostatic Intolerance

In cruising various POTS and OI discussion boards I sometimes come across posts by people who advocate sleeping with the head down to alleviate symptoms of orthostatic intolerance.  What is the answer to the debate as to whether it is better to sleep with our feet in the air or with our body elevated heads up?


I think whatever treatment we choose in our quest to recover/feel better from POTS or OI should be evidence-based where possible. 


There is so much speculation on what works and what doesn't that it makes it very difficult for a patient to decide...particularly when their own doctors engage in speculation. 


Thankfully there seem to be more and more clinical studies being done to help us out. Regarding the raising the foot or head of bed- I have found one clinical study proving the effects of raising the head of the bed. The report is entitled "Physiological effects of sleeping with the head of the bed elevated 18 in. in young healthy volunteers"

As for raising the foot of the bed - that has actually been used to induce orthostatic intolerance in patients for studies out of Texas. My speculation: It appears that raising the feet above the head is an emergency measure to be taken when someone has fainted but not to be used long term as it can can exacerbate OI.



Here are a couple of clinical studies regarding inducing othostatic intolerance in study patients through -6 degree negative tilt (head down, feet up) bed rest.

1. 
Orthostatic intolerance in 6 degrees head-down tilt and lower body negative pressure loading.

2. 
Cardiac Atrophy After Bed-Rest Deconditioning

What these studies show is after patients lie head down for a given period you can give them orthostatic intolerance and that the stroke volume of the heart upon standing is reduced after tilt-down rest. 

Not good! I would suggest that anyone currently sleeping with head down may be worsening their symptoms.

Air Travel and Postural Orthostatic Tachycardia


I recently received an email from a concerned mom.  It had a really great question about whether flying will cause problems in people with orthostatic intolerance or postural orthostatic tachycardia.

Here are my thoughts on air travel for those with "Spaceman's Disease"

Commercial airlines are required to pressurize their cabins to the point as close to sea-level as possible.  I believe the standard altitude for pressurization is 6,900 ft which is 350 ft below Mexico City's altitude.  Most people get symptoms of hypoxia or altitude sickness etc at around 8,500ft.  

There is a slightly reduced oxygen level during the flight but probably not something that will acerbate symptoms of POTS or OI.  However, the FAA advises that people who have heart or lung conditions or who have had recent surgery should take precautions. 

The air in a plane can sometimes have humidity levels below 20% which is very dehydrating.  If you are going to travel by air and you have POTS or OI then I recommend you DON'T rely on the airlines to keep you hydrated and fed. Those thimbles of water and tiny packages of weird pretzel-like snacks just won't do the trick.  Bring on board plenty of water (purchased after security) and nutritious snacks from home to keep in your carry-on such as salted almonds, celery sticks and "squeaky" cheese

Weightlessness, of course, is a very different experience from high-altitude as it involved the absence of gravity (weightlessness, as we all know, can cause orthostatic intolerance).

I have flown quite a bit while symptomatic including travelling while in a wheelchair and have not noticed a change in symptoms during or after flights.  

Hovering on the Edge of Wellness

A fitness lifestyle study conducted in 1981 examined the outcomes of two groups of overweight children; some who participated in a fitness aerobic program  and some who incorporated more active play into their lifestyle.  The results showed the fitness program group and the lifestyle group both lost weight during the 17 month study but the fitness program group measured better progress in cardiovascular endurance and recovery.  However, during the maintenance and follow-up period the lifestyle group were more likely to continue their fitness progress than the group on the fitness program.

This is only one of many studies examining the effects of positive lifestyle changes on our health vs prescriptive changes such as fitness programs, medications and surgical intervention.  The majority of the studies I have looked at all seem to suggest the same thing: positive lifestyle changes lead to a definite increase in long-term health and wellness.

As someone with POTS and OI, what do I take from that information?  Perhaps I really can't afford to be anything other than vigilant when it comes to choices I make about what I eat, activities I participate in, the amount of stress I allow into my life, assigning priorities for my time.

Here I am, almost at the end of the 9 weeks of Dr. Levine's exercise protocol and' I feel tremendously better but not completely better.  I am hovering on the edge of wellness...I can feel it...imagine it...but I can't quite fall into it.

What will happen if I don't adopt the right lifestyle changes will I always be hovering on the edge or will I regress?  There is so little research into what lifestyle changes really do affect positive changes in people with POTS how do I know my choices will be the right ones?

So far this is what I believe: 1) regular exercise is something I MUST continue in order to keep upright and out of a wheelchair  2)  healthy foods make me feel stronger 3) stress makes me feel worse  4) maintaining a healthy weight makes me feel better about myself.

I will continue to follow positive lifestyle changes and I hope and pray that someday soon they will allow me to fall off the edge into wellness.

The Next Phase of POTS

I can't believe it is 10 whole days since my last post.  So what has been happening?  Life has been happening...life without being overwhelmed by illness.

I am in the very last of the three months of Dr. Levine's exercise protocol.  My findings:

  • If I do cardio and my heart rate exceeds 160 bpm then I feel VERY poorly afterwards.  It appears that I cannot tolerate such a fast heart rate and it triggers exercise intolerance.
  • I must continue to drink plenty of fluids and eat lotsa salt with my meals.  If I am not vigilant after a couple of days my dizziness returns
  • Vitamin B2 really does prevent the worst of migraines.  I forgot to take them for three days in a row and JEEPERS the migraine I received was a real doozie...couldn't even walk
  • Losing a good night's sleep knocks me out for the next day
So although there is some persistent fragility, overall I am MUCH BETTER!

Best Day EVER!!!!

I am in my last month of Dr. Levine's exercise protocol and I would like to make the announcement that today I have felt GREAT!!! Last week I was pretty tired and weak but today. W00t!

What a great day is like:

  • 5:30am woke-up and watched the weather channel on TV
  • 6am got kids up and made breakfast: omelettes with spinach and cheese, chopped up fruit 
  • 6:45 made lunches for school
  • 7:15 made tea (ginger and lemon)
  • 8am went for power walk (yes WALK!) on trails around our house through woods, up hills BPM >130
  • 9am finished walk
  • 9:20 rested 
  • 10am snack, took mini-chainsaw and pruned trees for winter damage etc
  • 12:30 picked pine cones out of golden retriever's fur
  • 1pm lunch
  • 2pm went back to pruning
  • 3:30pm snack, meeting at house
  • 5pm pick up kids 
  • 6om shower, snack
  • 7pm write on blog
  • Make dinner
Oh yeah baby!  This is how the other half lives... I totally forgot!!!

Evil Marmite and POTS

Mitch just posted on my previous Marmite blog to let us know that Marmite actually is loaded with MSG.  Now before you freak-out and throw your hidden stash of 6 Marmite jars in the bin you may want to know that MSG is actually a naturally occurring element in many foods.


A pizza with mushrooms, cheese and tomato sauce, for example is loaded with MSG because it the food it contains has the MSG built-right-in.  Marmite has lost of glutamate because of the yeast content.  That said, if you feel you are sensitive, and many people with Postural Orthostatic tachycardia Syndrome and Orthostatic Intolerance do have food sensitivities, then definately avoid Marmite. (thanks Mitch for the info)

Here is a really interesting post on MSG that I found and it specifically references Marmite.  You can find it here...

The following is an excerpt from the article which lists the MSG content in food which I found really surprising:
[per 100mg]
roquefort cheese 1280
parmesan cheese 1200
soy sauce 1090
walnuts 658
fresh tomato juice 260
grape juice 258
peas 200
mushrooms 180
broccoli 176
tomatoes 140
mushrooms 140
oysters 137
corn 130
potatoes 102
chicken 44
mackerel 36
beef 33
eggs 23
human milk 22

Building Blood Volume and Exercise

Having chronic low blood volume is a condition afflicting many sufferers of CFS, ME, POTS and orthostatic intolerance.  Building and maintaining blood volume is challenging and requires constant attention.  Even one day without adequate fluids can exacerbate symptoms to the point of incapacitation.

For those of us who are newly diagnosed or who have been at the mercy of physicians who don't understand OI, what is a proven treatment for building and maintaining adequate blood volume?

Exercise.

There is no escaping it.  Some of us have avoided exercise because it is painful, uncomfortable, too exhausting, and/or unpleasant. BUT even though exercise is HARD to do and it can HURT and make us feel WORSE in the short term, evidence is there that says we can improve our symptoms by conditioning our bodies. As someone told me when I was whining about how much my chest hurt during my session with the rowing machine "it might hurt but you're not going to die."  All for a good cause.

On this blog I have attempted to offer evidence for the treatments I have written about in the form of studies and research from reputable publications.  Here are links to two such studies on exercise and blood volume:
http://ow.ly/1wvFK
http://ow.ly/1wvGZ

Once Dr. Levine's study is published, there will be more helpful information on exercise programs but until then, if you want to start exercising don't forget to read the "Exercise" page on this blog for some tips on how to start with your own orthostatic conditioning program.

Soldier on!

Soldiers, Orthostatic Intolerance and Exercise

Next week my eldest son goes to Afghanistan. He is in the Canadian Infantry and for this mission he will be with the 1st Royal Canadian Regiment.  (Yes I am worried and yes I am VERY proud of him - he is very brave)

We can only imagine the challenging conditions he and his fellow soldiers will face overseas.   He will be on patrol away from the comforts of Khandahar and aside from the obvious dangers they face from the conflict  it will be hot, dry, and dusty.  Dreadful situation for anyone with orthostatic intolerance!

Which brings to mind a study I recently read about which examined the effects of endurance training in the treatment or prevention of orthostatic intolerance.  Performed by researchers in Vienna and included participation by folks from Vanderbilt, this study examined 2,768 soldiers for orthostatic intolerance using a questionnaire and the Tilt Table Test.  36 soldiers were found to have orthostatic intolerance.  31 decided to enter a "randomized, controlled trial".  Some soldiers were required to do 3 months of jogging and others were in the control group (sitting around playing video games and eating Viennese pastries?).  At the end of the study period, in the control group, 10 out of 11 participants showed no signs of improvement in their symptoms whereas in the jogging group, all but 6 of the 16 soldiers still had orthostatic intolerance.

The conclusion: endurance exercise can significantly improve the symptoms of orthostatic intolerance in a majority of patients (postural orthostatic tachycardia is an expression of orthostatic intolerance).

The abstract of the study can be found here: http://hyper.ahajournals.org/cgi/content/short/45/3/391

BTW- Please say a prayer for all our brave soldiers who have put their lives at risk at the behest of our nation.

Miraculous Return!! Girl recovers from POTS

Article on a teenager and her recovery from POTS:
by Jeff Meade , last modified April 02. 2010 11:36AM

TEMPERANCE — Soccer is the passion of Jillian Weiss’ life. She has been playing it since kindergarten while growing up in Sylvania, Ohio, where soccer is king.
She’s also a straight-A student at Bedford High School who had dreams of becoming an astronaut.
But Weiss spent one of the most important years of her life without school or soccer. She was stuck at home battling POTS, a strange disorder that causes debilitating fatigue, extreme headaches, dizziness and abdominal pain.
Postural Orthostatic Tachycardia Syndrome is defined as “excessive heartbeat increments upon upright posture.” It prevents sufferers — usually teen girls — from participating in sports, social events and even school.
Weiss returned to school last fall, although her battle with POTS continues. Miraculously, she is back on the soccer field for Bedford. TO FULL ARTICLE IN MONROENEWS...

Migraines with POTS and OI

Although I am now feeling much improved after doing Dr. Levine's treatment protocol there are times when I get quite severe symptoms.  Yesterday I had a migraine.  When I was in the acute phase of this condition I experienced migraines daily, sometimes continuously.

If you have read my page on Riboflavin you will now that I have been taking 200mg of B2 twice daily and it has helped reduce the frequency of my migraines significantly.  What are the migraines like?

Yesterday, as an example, it started with a dagger slowly being pushed through my eye socket. The vision in that eye went dark and through the other eye spots appeared.  The brain fog took over and if I had been on my feet I know that walking would have been a challenge.  (My family describes my walking as "lurching" when I am in this state.)

As the pain eased off after about 10 minutes I was left with the vision problems, brain fog, fatigue and general feeling of "crappiness".  Sitting prone with a bag over my head can help in these situations.

Fibromyalgia and Exercise

It is known that sufferers of Fibromyalgia and Chronic Fatigue Syndrome can experience symptoms of orthostatic intolerance.  As many as half of all sufferers, in fact, report OI symptoms.

An interesting study by John Hopkins Univeristy School of Medicine and published in Arthritis Research & Therapy looked at the effect of Lifestyle Physical Activity (LPA) on the symptoms of Fibromyalgia.  LPA can include walking, gardening, taking the stairs or in our household, washing the dog's muddy footprints off the kitchen floor.  What the researchers found was that sufferers who engaged in at least 30 minutes of LPA per day they experienced an improvement in their symptoms.

Perhaps all of our labor saving devices are actually making us sick since we no longer have the same physical workload people experienced even 50 years ago.  Maybe I should get rid of my remote controlled washer/dryer and robo-sweeper machine.

Day 63

I am still feeling better! Energy level is still low.  I seem to have just enough power to get through my exercises, get the minimum amount of housework/laundry done (thankless tasks) and drive kids around to their activities.  Anything activities in addition to the routine and I get extremely fatigued and it takes a couple of days to recover.  It's like living on the edge of a knife- it's not difficult to fall off.

My exercises currently consist of cardio, between 35-45 minutes in either the 135bpm or 145bpm zones with 10 minutes warm-up and cool-down.  Almost every other day I have weight training.  I do miss an exercise day here or there because of fatigue but I usually make up for the missed day fairly quickly.

Yesterday was one of THOSE days when I fell off the edge.  It was tiring just to breathe. Too bad we couldn't have an energy indicator on the forehead that turns black when your energy is low and green when you're ok.  Because even when you're dropping dead from fatigue you still look "normal".

Soldier on!

Postural Orthostatic Tachycardia and Brain Fog

Brain Fog Not Just Another Blonde Moment

Brain Fog is one of the most wretched symptoms of POTS and OI. For those of you who have had the pleasure of "Brain Fog", let me try to tell you what it is like to live with:
  • When someone holds up their hand and asks "how many fingers?" you may not be able to give a correct answer
  • You forget how to read a watch
  • Directions to get somewhere are useless, just strap a GPS to your chest with turn by turn directions
  • Your family learns to leave sticky notes around the house for reminders- "don't forget your purse" on the front door for example
  • You forget your kids' names
  • You forget your name
  • You can't remember if you recently ate, slept, fed the dog, fed the kids
For patients with POTS and OI, brain fog may be caused by poor cranial blood flow or volume.  I think that is why since starting the Lotsa Salt Diet the symptoms of brain fog have improved for me. Also, I think the vitamin B2 has helped as well.

The T-Shirt on the right is actually available for sale here!  I love it as the phrase says it all!

For Those Who are Bedridden with POTS or OI

I get a surprising amount of contacts from people who are bedridden with POTS or OI.  I know what it is like to be bound to the bed with symptoms that are so bad that life has been reduced to hour by hour, minute by minute living.

So perhaps YOU are bedridden and you are reading this post during a period where you feel ok enough to cruise the net.  I would like you to know that there is hope.  Here is what helped me:

Steel your will to do this (because you're mind is probably floating around in a brain fog).
  • Increase your salt intake to 10,000mg per day (check with your doctor) - Get whomever is feeding you or purchasing your groceries to get some of the foods on the Lotsa Salt sample diet unless you are already doing something similar.  
  • Make sure you are eating good foods and not junk.
  • Increase your fluid intake to 3litres - keep a big container of water by your bed and drink it through-out the day
  • Do some abdominal exercises, leg raises as often as you can through the day
  • Sit up or prop yourself up in bed if you can without passing out.  Try not to lay flat!!!

Here are two YouTube video on an ab and leg raises exercise you might want to try to do in bed:



Wine, Postural Orthostatic Tachycardia and Orthostatic Intolerance


If you have POTS or OI you may have experienced a reaction to drinking wine.  At a time in your life when drinking a little wine could really be useful isn't it a nuisance that our bodies won't cooperate?

Here are some thoughts about why wine may produce or worsen symptoms:

Histamines ( important to note for those with Mastosystosis)
Certain wines contain high levels of histamines. Red wine can contain 20-200% more histamines than white wine.  According to one study the histamine levels in wine ranged from 3-120 microgrammes/l in white wine, 15-670 micog/l in champagnes, and 60-3800 microg /l in red wines.  Some countries have even published histamine limits for wine. Germany for example suggests 2mg/l as a limit.  Seems low as it would probably exclude most wines.  Germans are obviously biased beer drinkers.

I found this product called "Histame" which claims the following:
Naturally Vitamins’ new dietary ingredient (NDI), the Diamine Oxidase (DAO) enzyme, was acknowledged by the Food and Drug Administration in 2008. This breakthrough achievement offers hope to millions of Americans who suffer from histamine food intolerance.
If I could find this on the local pharmacy shelf I may try it with a glass of amarone.

My neurologist told me once that I should only drink pinot grigio because of my migraines.  He never said why though.  Further notes: Wines also contain prostoglandin which may cause vasoldilation and  tannins which cause the release of serotonin.