My Pure Autonomic Failure; Up and Running with WEGO Health Activist Writer’s Month Challenge

April 2nd, 2013 by Carrie, the Just Mildly Medicated gal

Every April WEGO Health hosts the Health Activist Writer’s Month Challenge. I am excited as this is my first year. For 30 days WEGO challenges us to share with provided topics.  I will do my best to share each day through Just Mildly Medicated Blog, Facebook , and twitter. (I just oxford comma’d and I liked it) If you are not yet following Just Mildly Medicated all over the Internet today is a good day to start. 

 
I have been diagnosed with Pure Autonomic Failure; it’s a type of Dysautonomia. Dysautonomia is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). My condition causes me to have Chronic Fatigue, frequent Premature Ventricular Complex, GERD, Long QT syndrome, Inappropriate Sinus Tachycardia and Bradycardia, episodes of non-sustained Ventricular Tachycardia, Orthostatic Intolerance, and a spasm of accommodation which happens in ciliary muscle of the eye.
 
 
I am not always symptomatic which can be confusing for me as well as those around me. It is very hard to understand why I can go to the grocery store and a movie one day and the next walking to the kitchen can cause palpations, sweating, and dizziness. This unpredictability makes it difficult to make plans and causes emotional stress. Although I am an introvert by nature I do crave social situations and do not like being possibly thought of as unpredictable.
 

When your autonomic nervous system is dysfunctional in the way that mine is, both parasympathetic nervous system (PSNS) and sympathetic nervous system (SNS)  you tend to have opposing symptoms which makes getting a diagnosis difficult. For example I have both bradycardia and tachycardia; one is a too slow heart rate and the other a too fast heart rate. Most hours of the day, even during sleep, I have a range of anywhere from 50 to 120. I have been ‘stuck’ in each for more than 24 hours. Although they have opposite feeling neither are fun.

I wish I knew where this originated, its perfect

Like many people with a chronic invisible illness, I was misdiagnosed and treated incorrectly for years before stumbling on the right doctors who understood what was happening to me. When I say stumble I truly mean it too. I went to a walk in clinic for chest congestion the first time a doctor said he was concerned about my heart and nervous system and that I should see a cardiologist ASAP. I remember him scribbling notes on the strip from my heart rate monitor. “Long QT for rate / HR from 65 to 112 in 15 min laying down”. It still seems so crazy to me because that day I walked out thinking that guy was a nut job.

WEGO has asked me to share a few posts I think would be helpful to someone newly diagnosed. This actually means a lot to me because although there is no evidence that Dysautonomia (other than Familial Dysautonomia also called Riley-Day Syndrome) is hereditary; however my mother, sister, and daughter have all been diagnosed with different types of Dysautonomia and now aside from that a friend from High School is going through the diagnostic process for what could be Dysautonomia.
  

 If you find yourself wanting more of my story with Dysautonomia  you could read 30 Things About Me and Dysautonomia or Don’t Let Your Chronic Illness Define You.

 

I have what I have grown to love as the Pacemaker Series. (As of now I am still a NO on a pacemaker) The Possible Pacemaker and Phil Collins, To Pacemaker or Not To Pacemaker and my most popular post New Cardiology Break Up and Some Muay Thai Moves. 

 

Some blogs from others on the Dysautonomia journey that I just love are Musings of a Dysautonomiac and Living with Bob (Dysautonomia)

I hope you have a chronically amazing day!

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4 Responses

  1. Lindsay says:

    How am I just learning about WEGO now?? SO glad you mentioned it – it sounds like a great network.

    I’m always surprised to hear dysautonomia is not hereditary – at least when it comes to POTS, I know quite a few mother/daughter or sibling pairs who both have it. I hope they do more research on that soon.

    Thank you so much for mentioning my blog – I’m very touched.
    Lindsay (Musings of a Dysautonomiac)

    • Yeah, you should do the WEGO HAWMC! My Doctor, Randy in Pensacola, thinks there is clearly a hereditary link because of all of his patients who come in with family members (like I did). As of now there is no scientific evidence linking Dysautonomia, especially different types. My mom and I both have Pure Autonomic Failure, my sister is a very clear POTS, and my daughter is NCS (or whatever the new name of the year is).

      Thanks for checking in!

  2. in pursuit says:

    Every time I read your posts I have mixed emotions: I am so proud of you for taking to the interwebs and sharing your experiences. I am guilt-ridden for every complaining about a stupid headache or being “tired.” I am saddened becasue someone I care about has to struggle with this. And I am thrilled to be your friend;)
    V

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