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

New Information on Using the Bed Wedge to Build Blood Volume

Using a bed wedge is said to be helpful in building blood volume.  The picture here shows a series of wedges forming a slant where the whole body can be angled head down or up. For building blood volume the head of the body should be raised.  This slant with the head raised, according to Dr. Levine, is the optimal position for the body to be in for building blood volume.










Dr. Levine wrote me to say:
"It is not very helpful to just elevate your head on a wedge.  In order to be most useful at expanding the plasma volume, you need to sleep with your WHOLE BODY on an angle. "
After reading this I now have a railroad of pillows on my bed running from where my knees are to the bed wedge so that my entire body is slanted.  Dr. Levine went onto suggest that one could elevate the head of the bed by 4-6" but since that would not be met with great enthusiasm in our home, I elected to do the railroad thing.

For previous posts on building blood volume see:

Good News re Dr. Levine's Exercise Protocol


It has just been announced that Dr. Levine's POTS paper about the exercise program has been accepted in the Journal of the American College of Cardiology.  One of the problems POTS and OI sufferers have is finding a physician who knows about the condition and is knowledgeable about effective treatment options.

Recognition of Dr. Levine's treatment program in such a prestigious and widely read journal will help spread awareness of the condition to physicians and specialists who may have POTS sufferers as a patients.

Day Twelve

OK I am a weenie.  Today was Day Twelve of my experience with Dr. Levine's Exercise protocol and I was too scared to go to the gym.  Today's exercise was the first "hard-going" exercise in my schedule so I completely chickened out about going.  That is until I was escorted to my car and sent to the gym.

When I arrived at the gym thankfully Andre was the fitness consultant on duty.  He said he would check on me throughout the duration of the exercise to make sure I hadn't passed out on the floor.

In spite of my fears, I actually completed the entire exercise (less 5 minutes because I got confused about the time). I didn't pass out, have a stroke or do something disgraceful.

I am actullay looking forward to tomorrow's exercise session...weird!

Lotsa Salt Recipe - Egg White Omelette w/ Greens and Salsa

Egg White Omelette w/ Greens and Salsa


I cook this omelette a couple of times a week because it's easy to make, I can add lots of salt and it's tasty!

Ingredients - Single Serving

  • 1 tsp olive oil or spray olive oil onto a non-stick fry pan
  • 2 cups of Euro Greens or baby spinach
  • 1/2 cup of egg whites
  • small handful of grated or shredded skim cheese
  • 1/2 tsp Himalayan salt
  • 2 tbsp of salsa

Directions

  1. heat oil in an omelette pan or non-stick fry pan at med-high
  2. when pan is hot, toss in the greens and stir for two minutes or until the greens get wilted
  3. mix egg whites until frothy, pour into pan covering the greens
  4. add a small handful of shredded or grated skim cheese
  5. cover and reduce heat to med-low
  6. take off heat after 3 - 4 minutes or until cheese is melted
  7. flip omelette in half with spatula
  8. add freshly ground pepper
  9. serve with 2 tbsp of salsa

Lotsa Salt Recipe - Scallops in Wine Sauce

Scallops in Wine Sauce


This is an easy yet elegant dish to make and suitable for a lotsa salt diet.  I made this on the weekend for the whole family, tripling the recipe and it received rave reviews.  I added more salt to the dish last after serving everyone else.

Ingredients -  Serves 4

  • 2 1/2 tbsp Olive Oil
  • 1 large onion thinly sliced
  • 6 garlic cloves heated in the microwave for 45 seconds (cover them in case they pop)
  • 1 lb scallops, small ones taste better in this recipe
  • 1/4 tsp of dried red chili pepper flakes
  • 1/2 cup of white wine
  • 2 chicken bouillon cubes
  • 1/2 cup of chicken stock 
  • fresh basil
  • sea salt & freshly ground pepper to taste
Directions
  1. heat oil in large non-stick skillet to medium-high
  2. when oil shows patterns (it's hot enough) put in onions and cook until soft
  3. add garlic cloves
  4. cook for 2 minutes
  5. add scallops and stir for another 2 minutes
  6. add stock, wine, cubes, chili pepper flakes
  7. simmer until stock reduces a bit (3-5 minutes) 
  8. add coarsely chopped basil in final minute or so
  9. salt and pepper to taste
  10. serve over brown rice

Sodium = approx 550mg per serving before extra salt is added

Day Eleven

Did my workout 50 mins of cardio including warm-up and cool down.  This was the hardest workout yet.  I did it all on the recumbent bike as I didn't think I could actually get off the bike and make it to the rowing machine without disgracing myself by falling down and not being able to get up on my own.

Its embarrassing to stagger around bent over at the YMCA.  I wear a ball cap and hope that people don't recognize me.  What I need is a work-out shirt that states "I may fall down but I'm OK!" on both the back and the front. It seems strange that yesterday I felt better but today the workout was so difficult.  Soldier On!!

Increasing the Salt in Your Diet - PART II

Lotsa Salt in Nutritious Foods...

Making sure I have >8,000mg of salt in my diet daily required that I know how many grams of sodium were in a teaspoon of salt.  When searching for the answer on Google I found all kinds of conflicting answers.  So I chose a source that I thought was credible: The American Heart Association.  They say:
Sodium equivalents


1/4 teaspoon salt= 575 mg sodium
1/2 teaspoon salt= 1,150 mg sodium
3/4 teaspoon salt= 1,725 mg sodium
1 teaspoon salt= 2,300 mg sodium
1 teaspoon baking soda= 1,000 mg sodium
 In order to increase my daily dietary sodium intake to >8,000 I need to eat an extra 3 1/2+ tsps!

Here are some fairly nutritious, lotsa salt snack ideas that I use every day:

  • Motts Garden Cocktail 250ml size contains a whopping 650mg sodium - I drink at least 750ml per day  TOTAL = 1,950mg
  • Low-fat 1% cottage cheese has 700mg per 250ml.  I eat 375ml or 1 1/2 cups per day.  PLUS I add 1/2 tsp of salt to each 1/2 cup TOTAL = 4,500mg
  • President's Choice Organic Vegetable Broth has 924mg per 250 ml.  I actually sip this hot in a mug in the afternoon, I find it a comforting drink for our cold climate. TOTAL=924mg
    Grand Total = 7,374mg sodium
Other high sodium snacks:
  • salted roasted almonds
  • low fat cheeses
  • dill pickles - approx 200 mg per pickle
  • dulse is super-high in sodium.  You can get dulse flakes from organic food stores and it can be quite delicious sprinkled on a salad or incorporated into brown rice cooked in broth
I have discovered that it's not too hard to incorporate relatively huge amounts of salt in my diet to get to my >8,000mg daily target.  However, I am sure the cottage cheese, Vegetable Cocktail and broth will get a bit boring after a while so I will continue my hunt for other foods and recipes good for my Lotsa Salt Diet.

Increasing the Salt in Your Diet - PART I

Ways to increase your salt intake...without resorting 
to salt pills or junk food.

Increasing the amount of salt in your diet in addition to exercise are a more natural way to help increase blood volume.  People with Orthostatic Intolerance or Postural Orthostatic Tachycardia know very well the drawbacks of not having enough blood volume: it can dramatically increase the severity of symptoms.

In the past, doctors have suggested to patients with POTS or OI to take Thermotabs or other over the counter salt tablets.  When I was diagnosed with POTS over 12 years ago that is exactly what the doctors suggested to me.  However, it has since been established that ingesting salt via tablet can have the reverse effect on blood volume and dehydrate the body.  According to Dr. B. Levine's Research Team in Texas:
"The use of salt tablets isn't recommended as they provide a very large amount of salt to the stomach all at once and actually cause water to move from your circulation into your stomach and gastrointestinal system thus dehydrating you."
Many people would prefer to use salt to increase their blood volume over drugs like Florinef because of the potential short and long-term side-effects of taking fludrocortisone.

Putting Some Funk into your Lotsa Salt Diet
I have learned in the 10 days or so that I have been on my lotsa salt diet that in order to survive a diet containing >8,000mg of salt daily I need to embrace the salt crystal and learn how to use it creatively in my cooking.

I went to my local gourmet foods store to look for options and to get inspired.  In case you didn't know, there are many different types of salt available to purchase for a variety of cooking applications.  Some of the new and groovy salt I have found include:

  • Grey Celtic Sea Salt is totally unprocessed and hand harvested. It is dried by the sun and the wind, retaining the ocean s moisture and locking in a vast array of vital trace elements. Celtic Sea Salt is a coarse, moist salt that gets a light grey hue from the pure clay sole it is harvested from in France. I use this in vegetable stews, mushroom soup and for grilling fish.
  • Himalayan Salt is a multi-coloured salt due to the different types of minerals it contains. Check out this video on its (nudge) magical health properties.   I stir this salt into low-fat cottage cheese for a tasty lotsa salt snack.
  • Hawaiian Black Salt is just that...black.  apparently due to the lava particles.  I haven't actually found a use for this one yet.
  • Anglesey Salt, harvested on the west coast of Wales, has a light, smokey flavour.  Terrific on fish, pork or even sliced tomatoes with fresh basil leaves and a shake of old balsamic vinegar.
Gourmet salts such as the ones above are more easily absorbed into your food while cooking so add them towards the end.  I normally add my vast amounts of salt just before serving so I don't have to inflict my saltiness on other diners.  In PART II of Increasing Salt in Your Diet I am going to talk about what foods are particularly tolerant to the addition of lotsa salt as some foods instantly are overwhelmed by the extra saltiness where others have flavours that can still compete.   ...PART II

Day Nine

Today is Day Nine of being on the Dr. Levine's Exercise Protocol for POTS and OI.  I did my workout at the YMCA and only slept for 2 hours afterwards.  BUT THE REAL NEWS- my blood pressure was more stable today, in other words I was less likely to fall over.      Yip it's true.

So what have I done so far:

  1. lotsa salt
  2. lotsa water
  3. bed wedge
  4. low glycemic, very nutritious diet
  5. aerobic exercises keeping my heart rate within specific ranges as per the protocol
  6. weight training as per the protocol

Blood Volume & Orthostatic Intolerance

I found an interesting article on blood volume which states
Microgravity decreases PV (plasma volume) and EV (erythrocyte volume) which contribute to orthostatic intolerance and decreased exercise capacity in astronauts. PV decreases may result from lower set points for total body water and central venous pressure, while EV decreases may result from increased erythrocyte destruction. Trauma, renal disease, and chronic diseases cause anemia from hemorrhage and immune activation which suppresses erythropoiesis. The re-establishment of EV is associated with healing, improved life quality, and exercise capabilities for these injured/sick persons.
It goes on to say:
Erythrocyte volume expansion usually occurs slowly over many weeks to months, whereas plasma volume expansion can occur rapidly over several hours to days.
I have been consuming an extra 8,000mg of salt and 3 litres of water daily for a week now.  Even though I have experienced an immediate increase in "plasma volume" hence my weight gain, to get true benefit from my efforts at increasing total blood volume, including erythrocyte volume, I guess it will take weeks to months.  Soldier On!!

Lotsa Salt Diet - Week 1

I had my first weekly visit with the nutritionist Steve Sweeney from Simply for Life.  In one week since starting the diet I have gained 2 1/2 lbs :-(

BUT Steve thinks that is due to the increase in salt causing me to retain water as the diet contains about 1800 calories per day.  This week I am gradually adding a little MORE salt as my stomach has been tolerating the increase in salt pretty well.

Elevating Head During Sleep helps Orthostatic Intolerance

Does it really? I wanted to know because I BOUGHT a bed wedge and have been torturing myself with it for the last 6 nights. You'll see the girl in the picture on the right looking blissfully asleep on the foam triangle. Hah! The reality is that the foam is a like a concrete slab. I can't imagine she would be comfortable using the wedge without a pillow unless her last bed was a bed of nails.

So why does sleeping on a bed wedge help Orthostatic Intolerance? To answer that question I had to hunt around using Google looking for research studies on the topic. I found one recent paper published in 2008 entitled:

Physiological effects of sleeping with the head of the bed elevated...

I suggest you read the paper if you are considering using a wedge to treat OI symptoms. If you have read or heard any other studies regarding elevating the head during sleep and its effects on O,I I would be very grateful to hear about them.

Although after using the wedge for 6 nights I have not experienced an improvement in my OI, I believe that is because the exercise protocol is exacerbating my symptoms. Perhaps I would feel worse without the wedge?

Pillow Recommendations for use with the Bed Wedge



I have tried 3 different pillow types with my wedge:

1. The Contour Pillow

2. "Old Lumpy" and,

3. A "firm" hypoallergenic pillow

1. The contour pillow shown above is said to promote proper spine alignment, reduce snoring and aid in sinus relief. Combined with the Bed Wedge I found the contour pillow to be comfortable only if I kept still. As someone who constantly flops around when sleeping the contour pillow moves out of position and I end up with my head resting on the top of the curve and my neck off the pillow entirely. Not what the inventors intended I'm sure. For people who are more peaceful when having a snooze this pillow may do the trick.


2. "Old Lumpy" has been my favorite pillow for the last few of years. Fondly named for its 
scrunching qualities "Old Lumpy" is super soft like a pillow case only partially filled with stuffing. Unfortunately "Old Lumpy" did not work well because it was too slender to reduce the concrete slab like feel of the Bed Wedge foam...after a partial night of flopping around Old Lumpy fell off the bed and I didn't even notice the difference.

3. I found the firm hypoallergenic pillow by far the most comfortable because it elevated my head enough off the wedge that even if I turned onto my side I felt my head and neck to be in a comfortable position. It is also firm enough to stay in place during my flopping.



If you have been told that you need to increase your blood volume then I hope you'll give the bed wedge a try.  Why not?

Day Seven

It is Sunday today and Day Seven of my experience with Dr. Levine's exercise protocol.  Friday and Saturday, Days Five and Six respectively I couldn't exercise.  I was too tired and well...I was just too tired.  My blood pressure is more unstable than normal and walking, at times, is extremely difficult.

Today I went to the YMCA early this morning.  I forgot the attachment receiver that snaps onto my Polar chest strap heart monitor which was a nuisance.  Luckily the YMCA had Polar chest straps to lend out to customers.  My work-out consisted of a 10 minute warm-up on the recumbent cycle, keeping my heart rate below 120, a 30 minute work-out on the Concept 2 rower heart rate above 120 and below 140, and then finally a 10 minute cool down on the bike again lowering my heart rate to below 120.

Since I forgot my own heart rate receiver which links to my fancy Polar watch I couldn't work out on the rowing machine which doesn't have a built in receiver so I did the entire workout on the bike which does have a receiver and is connected to the YMCA's Technogym system.  As usual, the warm-up went ok then the next 15 minutes were HORRIBLE.  I felt like I was going to fall off the bike, my head was going to explode and I was going to die from a stroke/heart attack or something.  The next 15 minutes were better and the final 10 minutes I was ok.

At the end, when I got off the bike I looked like a 90 year old getting off a horse after a long ride.  I couldn't sustain my BP at all.  Rising from the floor, bent over double and clutching various workout machines I was able to stagger to the chair at the Fitness Consultant's desk at the front of the room next to the stairs.  There, I sat down and politely asked if I could have a print-out of my week's workouts (the YMCA have a fancy workout recording system called Technogym which should capture all my workout info including heart rate).  The fitness consultant said she couldn't actually print it out but could let me look at my workouts on the screen...which she did.  I thanked her after reviewing my wonderful progress on the screen  and I was able to get out of her chair and very carefully make my way, still bent over double, to the changeroom.

Tiffany, from Dr. Levine's team, did say I was going to feel worse before getting better so here I am feeling worse.  But soldier on I will.

What I have learned so far: I need to document my workouts AND my diet each day as I can't remember what I did or ate.  I forget sometimes how terrible my memory is :-)