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

Tuesday, January 10, 2012

Mast Cell Disorders and POTS - Part I

Last April as I was happily performing my exercises as per the Dr. Levine protocol my blood pressure crashed.  Up until then I was feeling pretty good: my POTS symptoms were diminished thanks to the exercises and lotsa salt diet and I was looking forward to an awesome summer.

At the time of the crash I was using a rowing machine, I had my Garmin heart rate chest strap on and was tracking my heart rate using iCardio (DigiFit) on my iPad.  Twenty minutes into the exercise the bp crash occurred and I fell off the rowing machine.  The same blood pressure crash occurred the following day and the day after that.   The crash did not seem to occur when my heart rate increased rather it crashed after the increased heart rate was sustained for >5 minutes.This new symptom was perplexing because previous to then I had not had a blood pressure crash while sitting and exercising (rowing).

I emailed Dr. Levine's team describing these events.  The response was as follows: 1) these events are not consistent with typical POTS, and 2) they are probably not due to a structural defect with the heart (I was thoroughly checked for this).  Intriguingly I was asked if developed hives or shortness of breath while exercising.  I didn't but the question led me to investigate exercise anaphylaxis.
Exercise Anaphylaxis: Def - A form of allergy manifest by a sensation of skin warmth, pruritis and erythema, urticaria, hypotension, upper airway obstruction DiffDx Cholinergic urticaria, anaphylaxis.  Websters Dictionary
Well, it just so happens that a group at Brigham & Women's Hospital is conducting a clinical study on exercise anaphylaxis.  This group specializes in immunology, and more specifically, mast cell disorders.  I called one of the researchers and gave her my abbreviated medical history (the long form of the history takes several hours) which she kindly listened to.  She suggested that based on my history of POTS and anaphylaxis as a child I be investigated for a mast cell disorder.

Can mast cell disorders cause POTS?  The answer to that question appears to be yes.  In an article entitled Understanding the Mechanisms of Anaphylaxis by Richard D. Peavy and Dean D. Metcalfe from the Laboratory of Allergic Diseases, NIH they talk about when mast cells are activated producing histamine.
 Histamine stimulates vasodilation, and increases vascular permeability, heart rate, cardiac contraction, and glandular secretion.
Sudden vasodilation causes blood pressure to crash and people to fall off rowing machines.  Mast cell disorders and POTS...a worthy line of investigation for someone looking to get at the root cause of their POTS!!  


4 comments:

  1. Yikes! That sounds scary. Did you ever have any episodes like that with previous activity? I just started Levine's exercise program this week and am nervous about how my body will handle it.

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  2. Wow! I'm so glad I found your site! I too have Oi and POTS (amongst how many other things, CFIDS, fibro, migraines, insomnia....) and get very discouraged by the lack of good info on OI, especially right now while I'm going through the worst i've felt in 20 years, and that's saying a LOT. I look forward to reading more of your posts. Yeah! Finally someone out there who also needs tons of salt....hate it when I only hear how BAD salt is for you. And check out my blog if you have the time or inclination. Good going!

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  3. This is very interesting. The past few months the doctors have been trying to find out what is wrong with me. The last doctor thinks it may be POTS.

    I've had a tilt table test and this seemed to indicate POTS. Also, I can hardly manage going up a flight of stairs. 20 minutes on the treadmill at 2.0 miles per hour, and I'm so weak and dizzy I have to sit down. It can ruin the whole day.

    When I asked if what my heart is doing may be connected to my food allergies, my doctor wasn't sure and considered it an interesting thought. Currently I avoid over 30 foods (including garlic, onions, pepper, corn, tomatoes, potatoes, fish, pork, etc.). My doctor suggested I also avoid wheat and dairy for a period to see if these were affecting my heart.

    I have numerous environmental (typical hay fever) allergies. When taken off of antihistamines this week so they could do more testing, I became so weak and sickly I couldn't leave my bed.

    I think at my next visit I'll ask about this Mast Cell Disorder.

    Thank you so much for blogging about your experience and what you are learning. This given me hope for a normal life again.

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  4. I am 20 years old and was recently diagnosed with a mast cell disorder along with POTS and ehlersdanlos. I was a D1 soccer player and was medically disqualified by the NCAA because of the severity of my condition. Instead of passing out, I go into anaphylactic shock when I workout too hard, stand/sit for too long, or have triggers that add up into the perfect storm which sends me into anaphylactic shock. Ive learned how to manage it better, and now am back at attending nursing school. My day to day issues now are brain fog, extreme fatigue, and here and there anaphylactic shock. Ive been having more good days then bad lately, and I consider myself very blessed. My favorite quote is, "don't say why me, say try me." Any struggle can be looked as a blessing when you are open to all it has to offer. If you have to go through it anyways, why not get something worth while out of it? Thoughts and prayers with you all!

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