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 24

The Art of being a Wet Noodle
It is Day 24 of my experience with Dr. Levine's exercise protocol.  My orthostatic intolerance is better...walking around is easier but the FATIGUE!!  I have spent two days within pillow launching distance of the bed and I still feel tired. 

1.The exercises are getting easier.
2. My blood pressure and hr seem more stable.
3. Fatigue has increased.

Perhaps the fatigue is due to the mardigras party I went to on Tuesday night.  BUT I ONLY STAYED OUT UNTIL 10PM!!!

Advice for Friends of Someone with POTS or OI

Orthostatic Intolerance and Postural Orthostatic Intolerance are conditions whose symptoms can be unpredictable and can vary from mild to debilitating.  Migraines, chest pain, dizziness, fainting, cognitive problems and fatigue are just some of the symptoms experienced by sufferers.  If you have a friend living with POTS and/or OI then here is some advice on how you can be supportive:
  1. If your friend is having difficulty with daily activities and you want to help, offer to do specific tasks such as cooking dinner Saturday, doing the dishes or vacuuming the living room.  
  2. Your friend may be on a special diet regime in which case check to make sure any treat or food you may bring over is diet-friendly.
  3. Some days are good and some days can be very difficult prompting the cancellation of activities which is discouraging for everyone.  Please be understanding, stay hopeful and keep making plans for the future.  
  4. Listen, listen and listen some more.
  5. Living with a chronic illness can be isolating.  Keeping in touch with cheerful or personal notes and email messages can make your friend feel like they are still part of the world.
  6. If you would like to purchase a gift think about an gift card or membership.  Audible books listened to on an MP3 or iPod can be much easier to enjoy for your friend who may be experiencing visual problems and fatigue which makes reading printed books difficult.
  7. One of the most challenging aspects of POTS and OI can be the reception a patient receives from their medical practitioners who may know nothing about the conditions (in spite of the body of research and thousands of patients).  A lack of support from their practitioner can be devastating.  You can help by validating your friend's feelings and challenges.
  8. A person with POTS and/or OI may not look sick when they feel sick. 
  9. Sometimes your friend may need to sit down to prevent a fainting episode.  This is normal for their condition.  It can also be embarrassing for your friend if a fainting episode happens in a public place.  If you want to help get your friend a glass of water (drinking 500ml water can temporarily raise blood pressure) and reassure others who may be witness to the episode and are concerned.  If your friend actually hits the deck in a fainting episode then allow 5 minutes in a sitting position while drinking the water for recovery. 
  10. And finally, your friend's memory may be impaired so if you want them to remember a date or a task write it down, send an email or put a sticky on their fridge.
I am sure to have left our some other important tips for friends but I hope this will give you some idea as to how to help cope with these chronic conditions.  

Marmite - The Perfect Food for POTS and Orthostatic Intolerance

Let me introduce you to Marmite - an unusual yet delectable (for some) spread made from brewers yeast extract.  A staple in many people's diet in the United Kingdom, it has not really taken off in North America....yet!

Marmite is made up of several ingredients in addition to the brewers yeast extract: Salt,Vegetable Extract, Niacin, Thiamin, Spice Extracts, Riboflavin, Folic Acid, Celery Extract and Vitamin B12.  I find spreading a thin layer of Marmite on slice of very old cheddar a delicious treat but it is more commonly eaten spread on a slice of toast.   There is a story that in 1994 when a British backpacker was released from being held hostage in India by Kashmiri separatists, the first meal he requested upon returning home was Marmite on toast.

So why do I claim that Marmite is the perfect POTS food?  For two reasons: 1) It is high in salt.  A 4g serving (what you would spread on toast) contains 200mg of sodium. and 2) It is high in iron, B12 and Riboflavin (B2). Minerals and vitamins whose health benefits are excellent for people with Postural Orthostatic Tachycardia or Orthostatic Intolerance.

Vitamin B2 is something I take everyday as prescribed by my neurologist to combat my migraines....and it works.  Since taking 400mg daily, B2 has significantly reduced the frequency of my attacks. See my section on Riboflavin! for more details.

Hopefully your local food store carries Marmite so you can give it a try.  If not you may be able to order it from this querky site devoted to the Marmite phenomena.

Day 22

I am pleased to announce that after 22 days on Dr. Levine's Exercise Protocol I can perform my work-out at the YMCA and afterwards proudly walk TALL, with my HEAD UP to the change room!

No more clutching workout machines as I slowly make my way to the stairs, bent over double, dragging my water bottle.  I am no longer the woman people look at with pity in their eyes as I do my impersonation of a 120 year old grandmother with gout.

I hope this lasts!

"Medical Mystery" Article on POTS

Migraines, memory loss: Was it all in his head? 
By Sandra G. Boodman Special to The Washington Post  Tuesday, February 16, 2010

Karen Hammerman could see that her son was upset, and when he told her why, she was unnerved. Adam Hammerman, then a 16-year-old sophomore at Charles E. Smith Jewish Day School in Montgomery County, had missed a week of school because of a virus and telephoned several classmates to see what assignments he'd missed.

"Something's wrong," he told his mother last May. "All my friends are mad at me. They say I've called them five times already and they're not going to tell me again." But Adam had no memory of making the calls.

The incident, Karen Hammerman soon discovered, was not isolated. One morning as Adam prepared to take a shower, he screamed after seeing himself in the mirror: He said he did not remember getting a haircut the previous day. He called his mother from school to ask what time she was picking him up, then called again five minutes later to ask the same thing.

"Basically it was like living with a 16-year-old Alzheimer's patient," Karen Hammerman recalled. See full article here.