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

Pens of Glory » The Race of Life

Here is an interesting creative post I found written by someone with POTS:
http://pensofglory.com/?p=348

If you have a story you would like to share with other POTS or OI sufferers, please send me an email at liz@postrecovery.com  It's nice to know we're not alone!

Day Nineteen

Yesterday was definitely a down day.  Today, however, I have more energy and plan to do my exercises at the YMCA.  Trying not to feel too discouraged I took a moment this morning to review my progress.  I have to say that generally I do feel better but the progress can be "3 steps forward, 2 steps back" that is IF I don't rest enough after the workouts.  Sooo after my workout this morning I am going to rest for the usual 1 1/2- 3 hrs.  Soldier on!

When Lotsa Salt is too Much Salt

One New Year's eve we decided to go to a beautiful country inn with the kids and some friends to celebrate.  We had a 6 course gourmet meal planned incorporating plenty of our local seafood and fish.  This was the most formal dinner the kids had attended and certainly the most adventurous culinary experience.

The second course of our meal was raw Shemogue oysters. DELICIOUS!  They were served in the half-shells on a bed of course sea salt.  As we were busy slurping our oysters and sipping our champagne, my son was struggling.  When everyone was finished their oysters my son quietly approached me and said "mom- I have eaten as much of the salt as I can but I won't be able to finish it"  Holy Moly!  We looked and he had eaten 1/4 of the plate of course sea salt that the oyster shells were sitting on.  He must of had a gallon of water that night!

Day Eighteen

Yesterday I felt soooo good after doing the exercise.  Not much staggering around at the YMCA trying to get to the changeroom.

Today, however, I am not so great.  I think it is because I expended too much energy yesterday after the workout, I didn't eat properly and I didn't drink enough fluids.

Oh well.  Today it is a down day: no exercise, hangin' out in my jammies.

The Salty Beauty of Miso

Thanks to Rusty for bringing up Miso as a wonderful addition to the Lotsa Salt diet!  Miso is a Japanese food staple made up of fermented soy beans, rice, sea salt and koji (aspergillus oryzea).  High in protein, minerals and vitamins (a great source for B12), miso can be the base ingredient of sauces, soups, spreads and stews.

In my cupboard I have two types of organic miso: genmai and kome.  Kome is a common miso most widely used and genmai is one of the most nutritious miso made from brown rice.  Look for miso that has been fermented for 12 months or longer for better flavour.

Sodium per 1 tsp of miso:
Kome = 250mg
Genmai = 300mg

To cook with miso, the rule of thumb is 1/2 cup miso to 6 cups water for soup.  Add to water when cooking brown rice for a salty treat or stir into tinned soups and stews when you're not up to cooking from scratch.

Lotsa Salt Recipe - White Bean Dip

I first tasted this delicious dip recipe when my cute-as-a-button niece brought it over for our Superbowl Sunday get-together.  What I like about this summery recipe is that you can add lotsa salt and it still tastes fresh.  I added Celtic Sea Salt to the dip for added sodium and the larger crystals made for delightful bursts of salty-goodness when dipping with carrot or celery sticks.


My niece tells me this recipe is from Dreena Burton's "Eat, Drink and be Vegan" Thanks Morgan!  Gotta get that book!

"White Bean Hummus w/ Fresh Thyme & Basil"
2 c. (one can) cooked white kidney (cannellini) beans - if using canned beans, rinse and drain first
1 Tbsp. fresh squeezed lemon juice
2 Tbsp. tahini
1 med. clove garlic, sliced (or to taste)
1-2 Tbsp extra virgin olive oil (I used 2 for a richer taste)
1 1/2 Tbsp. red wine vinegar
1/2 tsp. dijon mustard
1/2 tsp sea salt (or more, for your health!)
fresh ground black pepper to taste
2-3 Tbsp water (to thin dip as desired, optional)
3 tsp. fresh thyme, chopped (not dried)
1/4 c. fresh basil, torn or chopped (not dried)

Combine all in food processor except basil, thyme and water. Puree until smooth, add thyme & basil and (water) puree briefly to incorporate.

Is Dr. Levine's Exercise Protocol a Cure???

In talking to various specialists and also to Dr. Levine's team it seems that people can develop POTS or OI for a variety of reasons: trauma, illness, bedrest, predisposition etc. It also seems that the condition can go away permanently in some people while others (like me) it reoccurs or is constant.

The increase in blood volume, gradual strengthening of the body's large/core muscles and reconditioning of the cardiovascular system can help the body develop optimal "orthostatic health".  Being in optimal "orthostatic health" seems to enable the body to function better.  If the body deconditions and/or blood volume is reduced then the symptoms can return.  As I understand, restoring better health in someone with OI or POTS requires a lifetime, lifestyle commitment to nutrition, exercise and overall wellness.

Tiffany from Dr. Levine's team said that some POTS sufferers have chronic low blood volume.  I think I am probably one of them :-)  Eating a super high-sodium diet is probably only required up until optimal blood volume is achieved after which you can go into "maintenance mode."

My conclusion is that "Orthostatic Health" may not be a cure but it can allow our bodies to function better in spite of having POTS or OI.

Sample Daily Diet - For those with ZERO energy

If you are thinking about your diet then you are right to be concerned about nutrition.  When we are feeling exhausted and ill with POTS it is sometimes very hard to spend any precious energy on more than just rolling over in bed.  But nutrition is what can make us stronger along with exercise.  I am on a high-salt, nutritious diet at about 2,000 calories per day and into my thrid week of watching what I eat I am feeling better already.  I also burn about 300 calories on exercise (recumbent cycle, or rower).  Frequent meals, 5 or 6 per day, I find works best with my POTS

If it helps, here is one sample diet that's pretty easy to prepare by someone with zero energy:

Breakfast
3/4 cup 1% cottage cheese w/ half tsp salt
1 cup berries (use frozen, pre-washed when really pooped)
slice of whole grain bread
1 cup of veggie cocktail

snack
apple, 3/4 cup cottage cheese w/half tsp salt

lunch
2cups salad veggies (no corn, peas or squash), 4 oz tuna, chicken, fish
2 tbsp low fat dressing w/1 tsp salt
1 cup veggie cocktail

snack
low fat cheese stick, 20 salted almonds, 1 cup organic chicken broth heated in a mug in microwave, 2 whole grain crackers

dinner
2 cups salad veggies, 4 oz protein (example - steamed beans with 1/2 boneless chicken breast done in micro with a salty seasoning on top, make a whole club pack of chicken this way and toss them in baggies in the freezer to retrieve when needed)

snack
3/4 cup 1% cottage cheese w/half tsp salt, veggie cocktail

3 litres of water has been recommended to me as well.  If you're going to increase your salt intake don't forget to check with your doctor.

Lotsa Salt Diet - Week 2

Went for my weekly visit to see Steve Sweeney, dietician at Simply for Life.  He is helping with a nutritious diet which includes  >8,000 mg of sodium daily.  My weight was down 4 1/2 lbs from last week (yay!).  Steve said to expect fluctuations as my body gets used to the increased salt intake and new exercise regime.  He said that my metabolism will change as my body becomes used to the different activity level. This week I will be increasing my daily sodium by 1,500mg.


We also talked about the exercises.  I told Steve that sometimes it was so hard to do the exercises it was scary!  He said to try performing them two hours after consuming a low-glycemic carbohydrate...like oatmeal.  That should help boost my energy level for the exercises.  "Steel cut?" says I "definitely!" says Steve.  We are an oatmeal family and familiar with the chewy, almost nutty taste of the Irish-style, steel cut variety.  I have a fond memory of my mother cooking my breakfast oatmeal and my father secretly hiding a small rubber crocodile under the oats and then telling me it was "swamp oatmeal".


I will be cooking the oatmeal in water instead of milk which isn't ideal as I would prefer to use milk.  However, since I am looking at reducing calories I can put up with the water for a while....with the addition of some cut up fruit, salt of course and a sprinkle of cinnamon it should be palatable.  Breakfast at our house normally starts at 6:30am so that means exercises should start at 8:30am to get full benefit from the extra energy from the carbohydrates in the oatmeal.