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

Day 31

OK I am past the 30 day mark in doing Dr. Levine's treatment protocol for POTS.  My bp is more stable, the exercises are easier but the fatigue seems to be getting worse.
I am, so far:
  • being fairly diligent about my diet- nutritious foods only
  • keeping a log of everything I'm eating
  • consuming <10,000mg sodium daily
  • continuing my weekly blood tests because of the Lotsa Salt Diet
  • doing my exercises as prescribed.  However, I have added some upper body exercises for toning my biceps, triceps, shoulders - I will email Tiffany at the research center to see if that could be causing the increase in fatigue
Right now I feel as useful as a throw pillow...just not as decorative.

Soldier on!

13 yr old POTS Survivor - Stamford Advocate

Drawn to the bow: 13-year-old takes aim at becoming an Olympic archer
Published: 09:01 p.m., Wednesday, February 24, 2010
By Javier Serna
RALEIGH, N.C. — Miles Heyman, a 13-year-old North Raleigh boy who has been devoted to a recurve bow for nearly five years, hopes one day to represent his country at the Summer Olympics.
Heyman will be one of about 30 archers participating in a statewide National Field Archery Association competition this weekend at Carolina Outdoor Sportsman, which recently moved its store from far North Raleigh to 2411 Millbrook Road.
The event is run by the state chapter of the archery organization, and on the line will be statewide bragging rights. Competition will be taking place concurrently at two other locations in the state.
Heyman has won the event in his age group three times, and he has entered indoor and outdoor archery competitions on the national level, including with USA Archery, the body that oversees the U.S. Olympic archery team.
Heyman received his first bow as a present from his parents on his eighth birthday, having recovered from a medical condition called postural orthostatic tachycardia syndrome, a debilitating condition that raises the heart rate and causes lethargy.   See Full Article Here...

My Inspiration

Postural Orthostatic Tachycardia and Orthostatnc Intolerance can dramatically reduce the quality of life a person experiences.  It is not suprising that sufferers can be depressed and discouraged.  A doctor said to me once "you're unable to walk, you're in pain, you are suffering from a mysterious illness that we can't diagnose, we don't know how to treat this.  Gee, if I were you I would be depressed!"  This doctor was trying to talk me into taking anti-depressants.

In spite of succumbing to this condition several times in my life, I can't say I have ever been depressed.  Negative feelings I have experienced include frustration, discouragement, boredom, anger but not depression.

So why am I pathologically optimistic and happy? (most of the time)

To Jordy: Living with Postural Orthostatic Tachycardia and Orthostatic Intolerance

If you have been following this blog you will have read that I first exhibited symptoms of POTS/OI  twenty-five years ago. (phew!)  Since then, I have had several repeat performances:
  • age 22 (severe)
  • age 26 (mild)
  • age 33 (severe)
  • age 42 (mild, after a concussion)
  • now 45 (severe)
I cannot determine if there is a specific trigger for the episodes such as a viral illness, stress or deconditioning with one exception.  I suffered a concussion a few years ago which triggered a mild episode that unfortunately lasted all summer. cont...

Quote from Girl who finished Dr Levine's Program

Kayla attributes her complete recovery from POTS to Dr. Levine's Treatment Protocol! 
"I just completed a POTS study in Dallas , Texas . It is an exercise study in which they take you off all of your medications and put you on a specialized exercise regimen. It starts with all seated exercises like the cardio rowing machine, recumbent bike and swimming. It then moves you to the upright bike, elliptical, walking, and jogging. This is over a 3 month period.
4 months later, I do not have POTS. I knew this because I did not feel symptomatic but I now feel I can write about it because the tests confirmed what I had already known. I had a 2 hour standing test and a tilt test which all confirm this to be true."
Kayla from Stony Brook University

...from someone who just finished Dr. Levine's Program

I was sooo happy to read that someone who has finished Dr. Levine's Exercise Protocol has recovered from POTS.  That is fantastic news and I am so happy for her.  You can read her post here.

Since starting this blog I have travelled to and read all sorts of blogs and support group postings with some heart-wrenching stories from people who are really suffering from this condition.  To find a treatment which is apparently offering such hope for improvement is tremendous!

Lotsa Salt Diet - Week 3

Today I received a NEW Lotsa Salt Diet from Steve at Simply for Life.  He removed all of the wheat from the diet and increased the daily sodium by 2,000mg.  Now I am eating 10,000mg sodium per day with food.  Incorporating that much salt is actually easier than I thought it would be because of some very high-salt foods such as Motts vegetable juice- 650mg sodium in 250ml and organic vegetable broth-950mg sodium in 250ml.

Since I have gradually increased my salt intake I found that the extra sodium has not upset my stomach.  Also, taking the salt in my food instead of in tablets helps with tolerating the super-saltiness. (See my post about increasing the salt in your diet...)

Day 27

OK I am definitely getting better.  No question.  Did the tough, high-heart-rate workout and it was a BREEZE (ummm...relatively speaking).  Hard to imagine I was beeing such a weenie just over a week ago about doing this workout.  Chest pain only at the end of the high paced 20 minutes on the rowing machine.  Dizziness and brain fog hit about 5 minutes after the workout was done but I didn't fall over!  This is progress!

Now for my 2 hour nap and I'll be fit to cook a braised roast with steamed veggies, roast potatoes and yorkshire pudding. See recipe from My Last Supper (I will be good and ONLY partake of a small portion of beef, au jus and veggies)
Soldier On!