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

Orthostatic Intolerance sufferers We Are Not Alone! Yellow Wiggle shares disorder...


Recognition for Dural’s yellow Wiggle Greg Page
FORMER yellow Wiggle and Dural resident Greg Page will be made a member of the Order of Australia today.
The patron of the Australian Children’s Music Foundation will be honoured for his service to the arts, particularly children’s entertainment and to the community as a benefactor and supporter of a range of charities.
Page has been co-writer and composer for The Wiggles since 1991 and through his involvement with the highly successful children’s entertainment group has received four Australian Recording Industry Association (ARIA) awards.
He also received two Australasian Performing Right Association (APRA) awards in 2007 for international achievement and most performed screen writer overseas.
As part of The Wiggles, Page has helped release more than 30 CDs, 27 videos and DVDs and 30 book titles.
He left the children’s entertainment group in 2006 when he was diagnosed with orthostatic intolerance, a disorder which controls blood pressure and causes recurrent fainting and severe fatigue when people stand up.
Since then he has been involved in the establishment of a fund for the disorder which is overseen by Baker IDI Heart and Diabetes Institute.
He also provides one-on-one support for individuals suffering from the disorder.
He also has a passion for all things Elvis, which saw him recognised as a contributor of Elvis memorabilia for the Henry Parkes Centre in Parkes.  Read this article in the Hillshire Times...
(copyright) Hillshire Times

The Boston Globe - Jan 18/2010 "Put to the test"


Tripped by health woes, Lexington junior shifts from sports to school, public service

He used to be the basketball kid.
For Lexington High School junior Michael Ramirez Gants, who last month pegged a perfect score on the PSAT, acing the college aptitude test is not only an academic accomplishment, it marks a milestone in a journey back from illness that derailed his athletic ambitions and steered him in another direction entirely.
“It was important to have something substantial I could point to that couldn’t just come and go, as my health did,’’ Gants said of the test score.
Diagnosed with fibromyalgia and postural orthostatic tachycardia syndrome, disorders that affect the nervous and circulatory systems, his symptoms include headaches, nausea, and chronic exhaustion.
Gants prepared for the exam like other students, taking a four-week test prep course. When he took the test he worked on it for 25 minutes at a time, punctuated by walking breaks to regulate his circulation. He scored an error-free 240.
  Read the rest of this article on Boston.com



Day Three

Went to the YMCA to do my exercises.
First 10 minutes = ok
Second 10 minutes = not ok, it's really difficult, my head is hurting
Third 10 minutes =  gonna pass out and embarrass myself in front of other YMCA patrons
Fourth 10 minutes = hey its getting easier, I'm not going to die!
Fifth 10 minutes = Thank heavens its almost over

When I got home I thought I should lie down for a little while to rest.  When I woke up it was 3 hours later.  Pretty wobbly with chest pains and feelings of pre-syncope when walking around...but I survived hurray!!

Steve Sweeney's diet from Simply for Life was pretty simple to follow.  Lots of healthy but salty foods.  I never felt hungry all day.  Overall a good day.

Taking Responsibility

These days it seems people have a sense of health entitlement with little responsibility placed on the patient to manage their own wellness.  We expect to be able to eat whatever and whenever we want, we can decide to smoke, take drugs, be inactive, get addicted to caffeine and sugars.  And when we get sick, we demand answers from our physicians.  We want a quick fix and it should be painless, convenient and cheap. At what point do we take responsibility for the state of our own health?

People who suffer from POTS or other forms of dysautonomia aren't sick because of self-neglect, BUT from what I have read, heard and seen, when we are ill with dysautonomia: fatigued, in pain and discouraged we can totally abdicate responsibility for our own health management.

I've done it:
  • not keeping informed about the condition
  • following instructions from doctors whom we KNOW are wrong
  • making unhealthy food choices
  • doing nothing
When I read the postings on some of the dysautonomia message boards I get concerned when I read about people experimenting with any kind of medication hoping they will find relief from their symptoms. Often it appears the meds are prescribed by doctors who not only know little about the condition but make their patients feel like they're crazy!  

Maybe we should expect more from ourselves.  Maybe we should work harder towards total wellness and not just look for quick fixes for alleviating symptoms.  Maybe we should be doing as much as we can to lead a healthy lifestyle; eating right, exercising as we can and keeping ourselves informed with the latest research on our condition.  Maybe we should take total responsibility for our own health.  

Day Two

In the morning my heart rate was going through the roof as I was quietly lying in my bed, shortness of breath and chest pain.  Walking around was pretty difficult and I definitely couldn't do stairs.  By lunch time my symptoms improved and my heart rate stabilized around 90 BPM but wouldn't go down to the "normal" 60-85 BPM. Headaches off and on all day long.

Not sure if the symptoms have anything to do with the exercise or the extra salt in my diet or the phase of the moon.  By the evening I was feeling much better and drove my son to hockey.

Soldier on!!

Day One

Ugh.  Exercised for 50 minutes within the protocol-specified ranges.  The first 20 minutes were the hardest and I thought I wasn't going to be able to continue I felt so dreadful.  After that it got easier but my head hurt after 30 minutes.  When the exercising was done it took time to get my heart rate back down.  My hands are all puffy!

1 down and 89 days to go ...w00t!

The Nutritionist and Lotsa Salt

Today I went to my appointment with the nutritionist Steve Sweeney of Simply for Life. This is what they say about their nutritional program:
"At SFL we believe in doing one thing very well - helping people achieve their ultimate health through food. No pills, gimmicks or magic powders, just food from your grocery store. "
Steve asked me about my condition, read the documentation from Dr Levine and asked me for additional links so he can learn more about Dysautonomia. I told him MY OPINION (for what that's worth) that I needed a low carb, low-glycemic diet that contained lots of healthy foods but still included the Dr. Levine recommended 10,000 mg of salt per day.  I also mentioned that because of my IBS I would prefer to keep grains such as wheat and oats at an absolute minimum.

Steve will be preparing a menu plan of 6 meals/snacks per day along with a shopping list.  He also said that he would gradually increase my salt intake based on how much my stomach can tolerate.   Steve said I should get the menu plan via email by tomorrow - Yay!

Part of the SFP requires that I visit their office weekly to be weighed and to discuss the previous week's menu.  The program isn't cheap but if I get the results I want...that's priceless!!

Previous Episode 1

Tomorrow I start the exercise protocol. I know that I will not experience improvement for the first month or so because I have been told as much.  That said I am willing to tough it through because I believe it will help.

The first time I had a bad episode of POTS I was around 22 years old (that was 25 yrs ago...gosh!).  The doctor didn't have the foggiest idea what was wrong with me.  I kept falling over, I was extremely tired, had chest pain and persistent "brain fog".  He gave me vitamin B12 shots weekly, arranged for a nurse's aid to come in and help out at my house and was very compassionate.  The days I spent bedridden I decided that I needed to keep my body strong.  As often as I could from my bed I would exercise: leg raises, sit ups, use my arms while lying down to lift weights.  I couldn't walk to the bathroom, I would crawl on my hands and knees, sometimes it would take me 10 minutes to get there but I would get there.

I also changed my diet from a typical North American one which included lots of carbs and animal fats to an organic one with lots of veggies and fewer carbs.  Since no-one knew what was wrong with me I thought perhaps I was being poisoned from pollution and food additives.  The doctor offered anti-depressants which I turned down flat.  I felt the last thing my body needed was some additional funky chemicals with uncertain side-effects.

After 18 months I was able to ride a bike but I was still symptomatic with a spike in symptoms coinciding with my monthly period.  I would ride my bike everywhere and then I joined the local gym and started working out.  My work outs got longer and more intense until I was exercising 5 or 6 days a week for 2 hrs.  I was sure buff!!!

Six years later my symptoms returned even though I was sill exercising.

The purchase of a Heart Rate Monitor (HRM)

It was DIFFICULT to choose a heart rate monitor and watch which I need to monitor my heart rate as I am exercising. First of all there are hundreds to choose from and all of them have subtle and hard-to-understand features.

To find help in selecting a heart rate monitor and watch I went to our local Running Room store (incredible group of folks). Since they are all super-keeners for fitness I figured if anyone would carry heart rate monitors it would be them. They of course had quite a selection of monitors including products from both Garmin and Polar. I happen to know that Polar works with the gym equipment at the YMCA (and most other gyms in the city) so I narrowed my search to just Polar.

What I need in a heart rate monitor:
  • a big readable screen in the watch (I don't want to have to put glasses on to see what my heart rate is)
  • to be able to manually set heart rate zones. For example: my warm up zone should be between 110-120 bpm.
  • to be able to hear an alarm if my heart rate goes outside of a heart rate zone
  • for it to be compatible with the exercise equipment I will be using at the YMCA
I settled on the Polar FT7 at $159 cdn. It included the watch (they call it a "training computer" uhuh!), the heart rate monitor strap and a detachable transmitter thingy which snaps onto the strap. The detachable transmitter thingy is handy, I was told, because I could snap it onto special sports bras that have the monitor strap built into them.!!

The watch also has the ability to transfer heart rate information about from training to an online
Polar training site IF I get the optional Polar FlowLink(r) for a mere $69 usd. That might be handy if I get really into managing my heart rate.

I put the heart rate monitor on this morning much to the kids' delight. They are now trying to see what will raise mom's heart rate. They have tried poking me, trying to make me feel guilty, complaining about doing chores, talking about controversial subjects. So far all the only result of their hard work has been admonishments. :-)

Interesting though...since wearing the HRM, I have noticed that just walking around for a prolonged period can make my heart rate go up 30-40 bpm. Anything above 110 when I am walking around makes me feel sick.

Planning for the Exercise Schedule

I went to the YMCA today and met with Andre "Training Consultant" with my exercise protocol in hand. He read through the information and asked me a few questions about how much exercise I could do now etc etc. He wanted to plot all the exercises , as specified, into the YMCA's fitness computer system.

At our local YMCA, they use a fitness tracking program called Technogym. The system allows the consultants to enter as many workout routines as required along with the time, intensity level and HR zone. The customer uploads the information from a kiosk in the gym onto a fitness "key" which you plug into the exercise machines as you use them. The key downloads the information to the exercise machine and ensures you stay within the set exercise parameters.

So long as I can stagger from one machine to another and plug in my "key" I will be able to get the benefits from the prescribed exercises without using too much of my brain. This is a bonus, as you would understand if you suffer from POTS or OI, since some of the time our brains are in a holding pattern.

Getting ready to start:

Getting ready to start: Today I will purchase my chest strap heart rate monitor and watch and my bed wedge. I am also going to put all of my scheduled workouts for the Levine Protocol into TeamBeachBody.com in order to track my progress.

Yesterday I spent much of the day on the phone trying to find out if Medicare or my health insurance provider would cover the cost of a rowing machine required for the protocol. The answer is no on both counts. So instead I have decided to get a month-to-month gym membership at our local YMCA which will only cost around $45 per month. The YMCA has all the equipment I need, supervision and a swimming pool.

I'm going to ask the fitness trainers at the YMCA to help me learn the initial exercises and watch me in case I flop on the floor...which I probably will do on a regular basis for the first couple of weeks. However, they'll soon get used to seeing a woman crawl around from exercise to exercise, clutching her heart and drinking from a 2 gallon water bottle.

Just two more days until I start. The prospect of recovery is VERY exciting!!!!!

Dr. Levine Exercise Protocol for POTS

Next Monday I will be starting Dr. Levine's exercise protocol for POTS sufferers. I cannot disclose the nature of the protocol until the study is published but I can talk about whether it is working. It will take 3 months to complete. Hopefully my progress will be positive in which case perhaps others will benefit from this sharing of my experience.

As I start this new exercise regime from Dr. Levine I will also start a diet designed by a nutritionist and physiologist (not part of Levine's group)consisting of protein & low glycemic carbs. NO MEDS as I have always felt that I was not prepared to be a guinea pig for medicine that had an uncertain effect and potential harmful side effects. I will take nutritional supplements.

Although I was first diagnosed with POTS and OI at John Hoplkins 12 years ago my first epeisode was 25 yrs ago!! The episodes seem to be cyclical with each episode lasting about 2-3 years. When it is at its worst I am wheelchair bound and am not really coherant.
Symptoms:

  • low bp
  • chest pain
  • fainting
  • IBS
  • neuropathy
  • migraines
  • visual problems - white outs, dimming
  • tachycardia
  • confusion, memory loss
  • exercise intolerance!!

Wish me luck and I hope this new protocol will yield results that all of us can benefit from.