My Recovery from P.O.T.S.

I was diagnosed with POTS in July 2012, after a viral infection in April that seemed to really set me back.  POTS is a form of Dysautonomia with a wide range of symptoms that can be both debilitating and alarming.  I went to the ER in May, because I thought I was having a heart attack.  That's how bad it was.

There is far too much information to post here about the condition, but you can read more about POTS at www.dinet.org.  It was through this website that I found my wonderful cardiologist, who not only knew that I had this rare condition, but specializes in it!  We live in a very large metroplex and there are only 2 such physicians within this metroplex who diagnose and treat POTS.  What a God-send!  I've heard of many people who have to drive/fly for hours to find the nearest doctor to help them.

My most severe symptoms were:
low blood pressure
rapid heart rate upon standing
extreme lightheadedness upon standing
blackout spells
exertion intolerance
heat intolerance
heart palpitations
brain fog

I was very near worthless at the age of 33.  Scary.

My family doctor detected low Vitamin D levels, but beyond that, became stumped and couldn't really help me further.  When I asked about getting a referral to a cardiologist, he denied the necessity.  He's a wonderful doctor whom I will continue to see for other things, but he just didn't know what POTS was.  Nor do most other doctors.  It's just not commonly seen.

It was after spending 3 months with my family doctor that I moved on to find my cardiologist.  I am writing this in June 2013, and can say that I have almost fully recovered!  I have felt really good (not perfect) for about 2 months and continue to improve.  The efforts I have taken will be life-long, though, or POTS will come visit me again.  No, thank you.

Those living with POTS may be interested in the steps I have taken to recover.

• Salt tablets (I was prescribed 4 grams/day-this was crucial to hydrating my body enough to stop the heart palpitations and give me enough energy to begin a very slow road to tolerating exertion.)
• Massive amounts of water (Most people do not have difficulty swallowing the daily requirement of water.  Doesn't mean they do it-just that they could.  This is very difficult for me.  I have a hard time choking down enough fluid.  It's as if my body is water-logged and feels sick if I drink more than 40-50oz. of fluid.  This isn't enough, however, and it is a daily struggle to get 64oz.)
• Exercise (When I began, I could hardly stand upright for more than 5-10 min. before blacking out.  My cardiologist has an exercise specialist on staff and he gave me a very specific plan to work my way up. I'm doing great with this!)  
• Sleep (I have been fighting chronic insomnia for about 5 years.  I usually waken after 2 a.m. several nights a week and stay awake for hours.  I currently take a mild beta-blocker and Ambien at bedtime.  The insomnia is lessening, but we are still tweaking this.  Getting enough sleep is vital to feeling well.)

It is also important to note that a geneticist confirmed that I have Ehler's Danlos Syndrome.  This is a genetic disorder that will not go away.  There are many different types, and I exhibit symptoms of the Classical and Hypermobility types.  These types are not fatal, as some are.  However, it is very interesting to know that many people who have EDS will develop POTS at some point in their lives.

I underwent MANY tests to confirm POTS and to make sure there were no underlying cardiovascular problems.

My biggest piece of advice for anyone who suspects they have POTS or another form of Dysautonomia, would be to move heaven and earth to find a Cardiologist / Electrophysiologist who specializes in POTS/Dysautonomia.  A family physician or regular cardiologist will not do.  Make every effort to find the right doctor, and then drive/fly/take a bus to wherever that doctor is and get the right diagnosis and treatment.  I know I would not be where I am today in my recovery without the wisdom and expertise of my cardiologist.

Feel free to check out my new blog that is all about Running from P.O.T.S. !  See you there!