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

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.  

Clinical Trials and Postural Orthostatic Tachycardia

Wanna be a Lab Rat?

Only a few years ago it seemed there was very little research being done on postural orthostatic tachycardia and orthostatic intolerance.

I just went on the "clinical trials" web site and saw 18 active trials currently being performed (16 or so actively recruiting volunteers) for patients with POTS specifically.  The web site can be found here

POTS and OI and my Stomach

I have not posted in a few days as some of you have kindly noted.   The real culprit behind my absence is my nutritionist.  Since starting Dr. Levine's treatment protocol for POTS I have also been under the care of a knowledgeable nutritionist, he and I have worked together to plan how I can add 10,000mg sodium to my diet daily without turning into something akin to beef jerky.

My diet has been highly regimented because I insisted on including a weight loss element to my diet to help me lose the pounds I have gained during this round of POTS/OI.  Every gram of food entering my mouth for the last few weeks has been weighed and documented.

So why is my nutritionist to blame for my lack of blogging?  This week was the first time I had an "anything goes" eating day.  Yes, on my strictly controlled diet I was allowed a day where I could eat anything I wanted (the nutritionist didn't actually say "anything" that is my loose interpretation of his instructions).  So, of course, I picked a wonderful restaurant with a fantastic wine list and great dessert menu and went crazy.

I feel better now thank you.

What I learned from the experience:
  • My body really can't cope with sugary foods such as chocolate mousse and homemade cheesecake as it results in a too rapid heart rate 
  • 1 glass of wine is plenty so DON'T choose that wonderful bottle of wine, go with the house selection available by the glass unless you are with someone able to drink the other 4-5 glasses in a bottle.  For me anything more that one glass of wine results in a sleepless night due to rapid heart rate and "perspiring"
  • Pasta expands in the stomach
  • goes easy on the surf and turf