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

Miraculous Return!! Girl recovers from POTS

Article on a teenager and her recovery from POTS:
by Jeff Meade , last modified April 02. 2010 11:36AM

TEMPERANCE — Soccer is the passion of Jillian Weiss’ life. She has been playing it since kindergarten while growing up in Sylvania, Ohio, where soccer is king.
She’s also a straight-A student at Bedford High School who had dreams of becoming an astronaut.
But Weiss spent one of the most important years of her life without school or soccer. She was stuck at home battling POTS, a strange disorder that causes debilitating fatigue, extreme headaches, dizziness and abdominal pain.
Postural Orthostatic Tachycardia Syndrome is defined as “excessive heartbeat increments upon upright posture.” It prevents sufferers — usually teen girls — from participating in sports, social events and even school.
Weiss returned to school last fall, although her battle with POTS continues. Miraculously, she is back on the soccer field for Bedford. TO FULL ARTICLE IN MONROENEWS...

Migraines with POTS and OI

Although I am now feeling much improved after doing Dr. Levine's treatment protocol there are times when I get quite severe symptoms.  Yesterday I had a migraine.  When I was in the acute phase of this condition I experienced migraines daily, sometimes continuously.

If you have read my page on Riboflavin you will now that I have been taking 200mg of B2 twice daily and it has helped reduce the frequency of my migraines significantly.  What are the migraines like?

Yesterday, as an example, it started with a dagger slowly being pushed through my eye socket. The vision in that eye went dark and through the other eye spots appeared.  The brain fog took over and if I had been on my feet I know that walking would have been a challenge.  (My family describes my walking as "lurching" when I am in this state.)

As the pain eased off after about 10 minutes I was left with the vision problems, brain fog, fatigue and general feeling of "crappiness".  Sitting prone with a bag over my head can help in these situations.

Fibromyalgia and Exercise

It is known that sufferers of Fibromyalgia and Chronic Fatigue Syndrome can experience symptoms of orthostatic intolerance.  As many as half of all sufferers, in fact, report OI symptoms.

An interesting study by John Hopkins Univeristy School of Medicine and published in Arthritis Research & Therapy looked at the effect of Lifestyle Physical Activity (LPA) on the symptoms of Fibromyalgia.  LPA can include walking, gardening, taking the stairs or in our household, washing the dog's muddy footprints off the kitchen floor.  What the researchers found was that sufferers who engaged in at least 30 minutes of LPA per day they experienced an improvement in their symptoms.

Perhaps all of our labor saving devices are actually making us sick since we no longer have the same physical workload people experienced even 50 years ago.  Maybe I should get rid of my remote controlled washer/dryer and robo-sweeper machine.

Day 63

I am still feeling better! Energy level is still low.  I seem to have just enough power to get through my exercises, get the minimum amount of housework/laundry done (thankless tasks) and drive kids around to their activities.  Anything activities in addition to the routine and I get extremely fatigued and it takes a couple of days to recover.  It's like living on the edge of a knife- it's not difficult to fall off.

My exercises currently consist of cardio, between 35-45 minutes in either the 135bpm or 145bpm zones with 10 minutes warm-up and cool-down.  Almost every other day I have weight training.  I do miss an exercise day here or there because of fatigue but I usually make up for the missed day fairly quickly.

Yesterday was one of THOSE days when I fell off the edge.  It was tiring just to breathe. Too bad we couldn't have an energy indicator on the forehead that turns black when your energy is low and green when you're ok.  Because even when you're dropping dead from fatigue you still look "normal".

Soldier on!