Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.


Written by Katie. Posted in POTS Appointments

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After 11 long months, I have my first answer.  I went to Cleveland yesterday to get the results from my autonomic nervous system testing.  I went into the appointment with low expectations, most of all to protect myself.  I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything.  The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn’t know what it was.  I would leave many specialist’s office feeling like a crazy person when I was told my tests were normal, or that they came back “beautiful,” while I was still having crazy symptoms that made me sick.

So I have to admit that with each negative result, I would go home and return to researching what could be making me sick.  And as many of you know, my computer would often have to be taken from me because the Internet can be a scary, scary place.  A lot of the “possible diagnosis’s” I found that fit my symptoms were terrifying for a worry wart like me. 

So yesterday, to protect myself from more frustration, I went in prepared to hear that again, the results were normal.  The doctor came in and the first thing he said was, “So, what do you have?”  This took me by surprise and I said “Excuse me?”  He said again, “So what do you have?”  So I went out on a limb and I said (based on my Internet research and what I knew from the tilt table results), “Ummm, I think I could have POTS.”  The doctor smiled, stuck out his hand, and shook my hand.  He said, “You are good.” 

So there it was, my first official diagnosis.  Postural Orthostatic Tachychardia Syndrome, a form of dysautonomia.  He explained that my QSART test was abnormal, indicating Autonomic dysfunction, and my tilt table results confirmed the diagnosis of POTS.  

Basically, the definition of POTS is:

“Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.

While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system’s control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).

(Found on http://www.dinet.org/), which by the way, is a great site to learn a lot more about POTS.

We talked about the basics of POTS; that no one really knows how you get it.  That pregnancy can make it worse.  That treatments are very much trial and error for each person with POTS. 

The doctor went over the treatment plan he will be starting me with:

1.  I am starting a Beta Blocker to help slow my racing heart. The Beta Blocker helps prevent the veins from opening too much, and will hopefully help cause an increase in blood pressure. 
2. I am to drink 3 liters of liquids a day to help raise my blood pressure.  (I’m gonna be peeing like a race horse).  He specifically mentioned Gatorade because of the sodium. 
3. I am to eat LOTS and LOTS of salt to help retain all the liquids I will be drinking to prevent too much blood pooling in my veins. Dill pickles, tomato juice, and soy sauce for me.
4.  I am to wear compression stockings (cute, huh?) to prevent pooling and to help keep blood flowing back to my brain.   
5. I am to elevate the head of my bed to help keep more fluid in my body overnight. 
6. To improve vascular tone I am to do exercises such as water jogging and toe raises.   
7.  I am to continue taking 600 mg. of CO Q 10 a day because he said that my problems could be stemming from mitochondrial issues. 
8. I am to begin taking an SSRI (antidepressant) because of the effect that Serotonin has on the Autonomic Nervous System.  (I still need to learn more about this)
I am also getting more blood work done to test my Serotonin and Catecholamines. 
It was explained that Beta Blockers work for some and not others, and what works well for one “POTSY” may not work for another so I will just have to wait and see. 
I know I still have a lot to learn, and quite a few lifestyle changes to make.  But the GREAT news is I finally have an answer and a start for how to try and treat it.  Knowledge is POWER!

And to try and find some humor in the whole thing, you can now refer to my sister Allie and I as the POTS and PAN (Polyarteritis Nodosa) sisters.  To quote Jimmy Buffett, “If we couldn’t laugh, we would all go insane..”

Now on to the geneticist tomorrow to see about Ehlers Danlos…Stay tuned.

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