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 17 of Dr. Levine's Exercise Protocol (A.S.)

It has been 17 days since I started the Exercise Protocol for the second time. I have improved much more quickly than the first time around, probably because I wasn't as symptomatic when I started. I also require less time for recovery which is great!

17 days ago I was between Stages III/IV. I am quite sure that if I had not started the protocol again I would have been in Stage IV or even V by now instead of an improving II/III.

(it is SO much easier to describe symptoms in terms of "Stages" and it also sounds less like whining too!)



Today on the schedule is 50 minutes on the rowing machine: 10 minutes of getting my heart rate up to 120bpm, 30 minutes of >120bpm and then a 10 minute cool down. Also on the schedule: watering baby basil plants and making marmalade from Moro oranges (yes, I know, marmalade is NOT on the diet. I intend to give it all away as gifts ;-)

I am also ensuring that sodium intake is high, sugar, caffeine and foods high on the glycemic index are avoided(including marmalade on toast...sadly) and 3+ litres of water consumed.

Postural Orthostatic Tachycardia Syndrome and Hormones

I recently wrote a post about a study on POTS and Menstruation which examined the link between the follicular phase of the menstruation cycle and worsening of POTS and OI symptoms.  What the study serves to highlight is the link between our hormones, renal-adrenal activity and the symptoms of Postural Orthostatic Tachycardia and Orthostatic Intolerance.

Should we all go racing out to the local pharmacy to find hormone creams to try to manage the ups and downs of our hormones?  Well,  you may want to read a previous blog post "To Use or Not to Use Medications"; which explores whether by interfering with the body's natural adaptive ability we may run the risk of further complications.

If you have POTS or OI you may be extremely sensitive to caffeine, drugs such as cold medication and even certain substances in make-up and personal care products.  In my case, I am also very sensitive to birth control pills to the point where I decided, after 3 months on a "low-dose" variety, to discontinue use.

Three "Ifs"

  1. If we know that hormone levels can effect our renal-adrenal activity and increase/decrease POTS/OI symptoms,
  2. If we are concerned that interfering with our body's natural adaptive capability through medical interventions could add further complications, and
  3. If we know that we are very sensitive to medications (such as birth control pills), then...
...we may want to proceed with extreme caution when looking at using synthetic or bio-identical hormones.
Too Late?
Well guess what?  There may already be significant interference with our body's hormones. See this PDF from the Institute for Agriculture and Trade Policy called "Smart Guide: Hormones in the Food system".  The paper describes a number of hormonal contaniments which are now in our food system such as:
  • Hormone growth promoters given to food animals
  • Hormone-active pesticides sprayed on food crops 
  • Hormone plastic additives in food packaging
  • Hormone disruptors that build up in the food chain - e.g., brominated flame retardants (PBDEs)
Removing Hormonal Contaniments may be Beneficial?
 There appears to be more and more research being performed to examine the effects on humans of hormones in our food supply.  While government regulators and agricultural lobby groups fight it out, I am playing it safe.
Recommendations from the IATP for reducing the amount of artificial hormones that we ingest:

  1. Eat low fat meats and dairy products.
  2. Eat certified organic where possible
  3. Avoid pesticide hormones (peel your fruits)
  4. Use hormone-free cans and bottles (instead of plastics)

Could be good advice for anyone whose condition may include sensitivity to hormone levels.  ;-)

GoDaddy ate POTSRecovery!!

For those of you who tried to access this blog over the last day or so OR who have tried to send an email to liz@potsrecovery.com please be advised that GoDaddy ate this domain.

However, after an email or two to GoDaddy president Mr. Adleman they rectified the situation and restored POTSRecovery.com back to its rightful owner. The email will take a little longer to restore. ;-)

Five Stages of POTS and OI

My recent relapse (entirely due to neglecting my exercises) has given me some time to ponder the various stages of POTS and OI.  For example: I was in Stage I, thanks to Dr. Levine's exercise protocol, until the Sausage Incident.  After the Sausage (A.S.), and from neglecting my exercises, I progressed from Stage I to Stage III/ IV in three months.  

This is my own description of the Stages and they may be very different for you.  I would really like to hear from anyone who has something to add or who would like to comment on the Stages as I have them outlined here.

Why do I want to describe the severity of POTS and OI symptoms in terms of Stages?  It's just easier to say "I am in Stage III" as apposed to "Jeepers!! I feel dizzy and unsteady, exhausted and my feet hurt too from the blood pooling." 

5 Stages of Postural Orthostatic Tachycardia or Orthostatic Intolerance
Stage I
Dizziness during follicular phase, when fatigued or in extreme heat.
Stage II
Dizziness or difficulty standing during follicular phase, when fatigued, in extreme heat or during periods of prolonged standing, blood pooling "pink feet",cognitive difficulties.
Stage III
Frequent dizziness, significant difficulty with standing for prolonged periods, fatigue upon exertion, blood pooling, cognitive difficulties.
Stage IV
Dizziness and difficulty standing for short periods, chest pain, cognitive problems,  blood pooling,  fatigue upon exertion, occasional migraine.
Stage V
Inability to stand, nerve pain, frequent migraines, visual disturbences, "autonomic storms", cognitive problems, frequent chest pain, severe fatigue.

RELAPSE!! or how avoidance ruined a good thing...

I have a terrible admission to make:  Last Christmas, there was an unfortunate incident with a Stadium Sausage (see previous blog post);  the Stadium Sausage, purchased at Foxborough during a Patriot's game,  inflicted a terrible revenge (it obviously was a Green Bay sausage) where a significant amount of fluid was lost over a short period of time.  From that incident and until recently I have not done any exercises.

Why?  A week after the sausage (A.S.) we were still "on holiday" and so endured cancelled flights, long airport delays and all sorts of other inconvenient travel adventures which made it challenging to find times to do regular exercises.

When we finally returned home I went back to work, which of course, I love. I also avoided exercising which I don't love so much.  A couple of weeks had passed since I had done regular exercises so I knew that a recovery time would be required after each exercise session and this would eat into my work hours.

What happens when I become"De-Conditioned"?
I avoided exercising and what happened?  I slowly became more "symptomatic" to the point of not being able to work at all...to the point where I had no choice but to repeat Dr. Levine's exercise protocol from the very beginning, increase the salt in my diet and forget about being useful for a while.

I am now in the third week of the exercise protocol.  This time around I am recovering much more quickly from the exercises. Initially I needed 4 hours of receovery time, now I need an hour or two. I am already feeling the benefits of the program and can spend most afternoons doing a few hours of work or other activities.  I am easily fatigued and if I "over do it" the next day will be spent totally wiped out.

Since this is the second time I have done the exercise protocol I know that it will take some time but if I persist, more and more time will be recoverd for normal activities.

For some people POTS and OI is a transitory condition and for some it is a lifetime challenge.  If I want to stay functional then I must accept that my lifetyle must include exercise and healthy eating...forever.

Soldier on!