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

To Jordy: Living with Postural Orthostatic Tachycardia and Orthostatic Intolerance

If you have been following this blog you will have read that I first exhibited symptoms of POTS/OI  twenty-five years ago. (phew!)  Since then, I have had several repeat performances:
  • age 22 (severe)
  • age 26 (mild)
  • age 33 (severe)
  • age 42 (mild, after a concussion)
  • now 45 (severe)
I cannot determine if there is a specific trigger for the episodes such as a viral illness, stress or deconditioning with one exception.  I suffered a concussion a few years ago which triggered a mild episode that unfortunately lasted all summer. cont...
cont...
A Typical POTS "Episode"
When I start to become ill I notice fatigue first.  It takes more energy to do every day activities.  Then I start getting migraines with visual disturbances and brain fog.  These symptoms obviously interfere with my ability to work but I can normally "tough it out" for a few weeks.  The next and most debilitating symptom is the unstable blood pressure accompanied by chest pain.  At its worst I cannot even sit up without passing out.  For my severe bouts I get around in a wheelchair for 3-6 months.  Total time spent being ill in a severe episode = 2-3 years, total time for a mild episode = 4 months.  Wow!

A Typical Normal Life "Episode"
In between my inconvenient bouts of POTS, I get stuff done.  After my first episode I attended the Royal Conservatory of Music to improve my harp playing skills, launched three successive companies and had two children.  After my second episode I worked on growing my business which I did, with the invaluable assistance of some very smart folks, and it grew to be one of the largest privately-held software companies in Canada (braaaggging rights!) and had two more children.  Since then I worked on another two companies, the last of which was incredibly promising but was rudely moved aside by POTS.  

Acute POTS
When in the acute phase of POTS (can't stand, pain, total brain fog etc) it is very difficult to socialize, impossible to work and normal activities such as remembering my children's names is challenging.  But I do what I can do.  I can change my diet so that it is VERY nutritious.  I experiment with things that make me feel better such as gentle exercise and yoga.  I work on my mental attitude so I stay positive, I search for clues as to why my body is not working properly and finally, I look for successful treatments like Dr. B. Levine's protocol.

In my wonderful, magical, blessed life to date I have been so fortunate to be able to do what I have done in full SPITE of having POTS.  I am thankful for everyday I am on the earth.

6 comments:

  1. thank you ! Tat gave me a great overview of your symptoms and history!

    were you able to jump into the exercises right away or had you been working up to doing the 'full' program before you officially started it?

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  2. Good question! The program is, in fact, all about starting gradually and slowly building strength and endurance without tipping the patient into "exercise intolerance" mode.

    There is more info about that on my Exercise Page at http://www.potsrecovery.com/p/exercise.html
    ;-)

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  3. this is an amazing story. it is so encouraging to see all you have done in spite of the syndrome! i too have had pots for a long time and am managing diet/stress and exercise to be able to accomplish and enjoy all i desire. keep up the great work!

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  4. Thanks PJ and that is really good to hear that you have managed your OI (POTS) to the point where you can accomplish and enjoy what you desire!! Great!!

    Let me know if you care to share more of what has made a positive difference to you in managing your POTS as I think people would find it very helpful in their own struggles. I would be delighted to do a special post. ;-)

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  5. Wow. Good for you! Thank you so much for this web cite, it has been very helpful. I had my first episode when I was 25 after whiplash and it lasted 6 months. I am now having my second and much worse episode at the age of 29. Im at month 4 and am starting to function more but am still pretty symptomatic. Thanks to your blog, I will hopefully start Dr. Levines protocol soon, I will find out if I was accepted into the research program this monday:)

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  6. Thank you so much for sharing. I have battled with undiagnosed POTS since I was a child. I figured out, over the years, that heat, weather,low magnesium and low potassium seem to be triggers for me. I just dealt with my symptoms that did not have a name. Until, my son developed POTS. I could not believe it. It's one thing when you just learn to deal with it...But when it's your child!! WOW I'm sorry people but I thought I was alone. I'm not!! Thank you sooo much for sharing!!

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