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

Saturday, February 9, 2013

My POTS Cured?

In my search to find a cure for POTS I have stumbled upon something that has had a dramatic impact on my symptoms.  After months of getting steadily worse with episodes becoming more severe I have made an almost complete recovery and I no longer have the symptoms known as Postural Orthostatic Tachycardia.


Background:


1) POTS sufferer from way back: I have experienced episodes of POTS and Orthostatic Intolerance intermittently all of my adult life.  I have been thoroughly investigated for heart defects and conditions, endocrine disorders, neurological causes etc etc.

2) Symptoms wax and wane:  As anyone with POTS should know, symptoms can vary from day to day and from year to year.  The collection of symptoms associated with POTS are numerous and include brain fog, Orthostatic Intolerance, pain, migraines, tachycardia.

After years of enjoying just the more common POTS symptoms new symptoms appeared such as swelling of face, flushing and wheezing.  I started experiencing blood pressure crashes while on a rowing machine (recumbent). The brain fog, body aches, dizziness and general malaise also increased.

3) Diagnosis: My current diagnoses include POTS, Orthostatic Intolerance, EDS III and suspected Mast Cell Activation Disease (MCAD).  I have normal tryptase levels, no detected igE-mediated allergies.

What I tried:


A) Exercise: When I couldn't stand or walk I would try to do core abdominal exercises in bed or laying down.  Even when my energy level, pain or discomfort is bad, exercising is a positive activity.  Allowing myself to become de-conditioned will and does worsen my POTS symptoms.  

After completing the Levine Protocol I felt much better and was more functional day-to-day.  Although exercise is an absolute positive, it alone was not enough to slow the progression of my symptoms.

B) Medications and Interventions:  I refused to take Midodrine (Amadine) since it has not been found that I suffer from Parkinson disease or Autonomic Failure or any other condition that can cause Orthostatic Intolerance.  I felt I could encourage my system to improve blood volume and overall orthostatic health without using meds as I believed that Midodrine would interfere with my body's own ability to adapt.

Fludrocortisone I saw as a short term intervention (three month) to assist with building blood volume. The same with IV fluids.

Salt loading in diet while monitoring potassium levels in blood and adequate water intake is my preferred method of retaining blood volume.

However, when cardio exercise became impossible due to blood pressure crashes I went on Mast Cell Activation medications such as ketotifen, loratadine, cromolyn, tranilast, ranitidine to see if my symptoms were caused by a mast cell reaction. If my symptoms improved on the meds then that would be a strong indication the symptoms were mast cell related.

My tolerance for exercise increased tremendously after the mast cell medications were active.
C) Environment: After responding to the mast cell medications I attempted to reduce the number of elements in my life that could possibly be "triggers" of mast cells upon exposure.  I rid my house of toxic cleaners, fragranced personal care products, fragranced laundry detergent, processed foods, perfumes etc etc.

Although these measures helped in the short term, over time my condition continued to deteriorate.  My health was so bad that I could not go out in public without collapsing.  No dinner parties, no shows, I even stopped flying in airplanes.  UNTIL...

I tried, along with the above measures, the Chronic Urticaria Pseudoallergen-free Diet.  Chronic Urticaria is a nasty condition where patients experience hives or an itchy rash.  The diet is extremely restrictive and those who have been on it for any length of time would think even Soylent Green sounds tasty.  However, it has proven extremely effective for those who have urticaria.  After three weeks of strictly adhering to the "Buzz-killer" diet my symptoms were disappearing.

 Here is a copy of "The Forbidden Diet"

Do not eat any of the following, not even a tiny little bit:
  • Breads and grains (except for oats)
  • Alcohol, vinegar
  • Sesame, nuts, peanuts and peanut butter
  • Pasta with eggs 
  • Cake, biscuits
  • Potato chips or any junk food
  • Margarine, mayonnaise, mustard
  • Eggs
  • Smoked meats
  • Seafood
  • Tomatoes, potatoes, sweet peppers, spinach, basil, artichokes, peas, mushrooms, rhubarb, olives
  • No pickled anything
  • Fruit, dried fruits, and fruit juices
  • Herbal tea
  • Use only fresh foods; no preserved foods, except deep-frozen foods without any additives
  • Chewing gum, candy
  • Spices and herbs (except salt and chives)
  • Additives: E100-E1518, preservatives or artificial colors, gelling agents, thickening matter, humectant, emulsifiers, flavor potentiators, antioxidants, separating agents, sweeteners, baking agents, modified starches, foaming agents, stabilizers, flavoring agents

What I think this means:

Some of the food items I have eliminated with the diet were not foods that I experience obvious reactions to.  Upon reflection I started seeing connections between eating a food or being exposed to a perfume or other toxin and then having a bad POTS day.  In fact, the more I though about connections between my symptoms, foods and toxins (personal care products etc) the more I realized there is indeed a relationship.  Chronic Urticaria is a reaction on the outside, on the skin.  Why couldn't my reactions, which present as POTS symptoms and now anaphylaxis, be taking place on the inside?


Like The Straw That Breaks the Camel's Back
For some UNKNOWN AS YET reason my body is overly sensitive to all manner of substances.  Like the proverbial straw that breaks the back of a camel, when too many of these substances are present, the back breaks and I experience symptoms.  I was like a injured camel with straws constantly falling on my back.  Until the straws were gone I couldn't heal.

Metaphors aside - when I reduced my pseudo allergen burden by going on the pseudo allergen-free diet and reducing the exposure to toxins, my POTS symptoms reduced dramatically.

I don't know why this works and neither do my doctors...

Blaming my POTS on an inflammatory or mast cell activation response does not explain why, after many healthy years, my POTS will flair or why adolecsents can experience POTS and then grow out of it.  I have no explanation as to why I have POTS or why I respond to a diet designed for people with itchy rashes.  There are many unasnwered questions but I do know that the measures outlined above are working.

If you have POTS would I suggest you try the above measures?


No question in my mind YES!  Why?  I don't need to answer that for you.
1) Exercise, salt loading/fluids
2) Restrictive pseudo-allergen diet
3) Get rid of all suspect substances from your house, work and car
4) Try over the counter mast cell medications such as H1 and H2 antagonists for at least 10 days to see if they have any effect
5) Do 1 and 4 with the support of your doctor

NOTES

A "relapsing remitting" pattern of illness is noted in Molderings journal article on Mast Cell Activation Disorders.   
In studies, POTS has been linked to Mast Cell Activation for many years.   
Exercise-induced anaphylaxis, a mast cell misbehaviour problem, can also cause sudden drops in blood pressure. 

6 comments:

  1. Glad you are feeling better. Thanks for the update. I'm having a hard time wrapping my head around what you are eating every day. I am gluten, dairy, corn, soy, caffeine free and it can be difficult at times. I can't imagine removing fruit, potatoes and spices!! If you slip up and ingest something on that list do you have symptoms of POTS again? Would love to hear what you are eating as well.

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  2. This diet is very similar to the autoimmune diet as well. Some POTS patients have been told an autoimmune issue is playing a role in their symptoms as well.

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  3. Yes, what does this leave to eat? Can you give us a link of a comprehensive diet to follow? What's a daily meal plan like for you? Kind regards and congrats on your progress!

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  4. Hello,

    Most likely, your POTS is caused by the excess histamine released by your mast cells. Hives are caused by histamine too, which is why you are responding favorably to the diet used to treat them. The real question is why are your mast cells unstable and constantly degranulating? I believe it is because of all the environmental toxins out there (this is also why you have responded favorably to reducing your toxic load) but especially suspect are the heavy metals, and specifically mercury. You can see two studies linking mercury and mast cell degranulation here: http://www.ncbi.nlm.nih.gov/pubmed/20222982 and http://www.jimmunol.org/cgi/content/meeting_abstract/182/1_MeetingAbstracts/38.26.

    I also see you have EDS. You may want to check out www.prettyill.com if you haven't already. Also, The Low Histamine Chef's website.

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  5. Hello, I was wondering how long it took you to feel better on this diet? I am doing it strictly now for 1 week and boy is it tough. I just need some encouragement. I have suspected mast cell issues.

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  6. How did you come across the diet? On your own, in your research, or did someone tell you to try it?

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