So You Have POTS?
Most of you may have found me through various articles I’ve done in magazines like Cosmopolitan (*please disregard the title of this piece, POTS is not a rare disease it is just rarely diagnosed!) and websites like The Huffington Post about the complete roller coaster ride it was to be diagnosed with Dysautonomia/ Postural Orthostatic Tachycardia Syndrome (POTS) as a young adult.
The story is the same for many–one day you’re fine and the next–well, you’re just not.
I wasn’t an athlete or anything, but many more patients I would go on to meet after my diagnosis would be. Ages of patients range from pre-teens to senior citizens, though the most commonly diagnosed are young adult women.
Symptoms also vary, but some of the most common are tachycardia, fainting, dizziness, fatigue, migraine, gastric paralysis, poor circulation and chest pain.
So basically, like, everything that might resemble anything from a panic attack to a heart attack. Neither of which are a good feeling and neither of which will help you when you get to the ER trying to find relief.
POTS is part of a larger umbrella disorder called Dysauotnomia. This is the dysfunction of the autonomic “automatic” nervous system. Which means all automatic functions in your body–how you regulate sleep, temperature, how slowly or quickly you digest food, whether you retain enough fluid or not–all of these are now completely all over the place.
There is no overall cure or treatment for POTS or Dysautonomia. They can only be treated on a symptom-by-symptom basis.
For me, that means I have multiple medications and treatments I use every day to keep my body functioning.
These were the first medications that were prescribed to me and they made a HUGE difference in how I felt. I was having trouble sitting/standing up without completely blacking out, but once my body was regulated with beta blockers, I was able to cope with my blood pressure and regain some balance.
Florinef is a small pill that helps you to retain water, but be forewarned, it won’t help much at all if you don’t use—
IV Saline Therapy
According to Dr. Santa Maria, ”
IV Saline is an isotonic solution used to maintain adequate hydration in many clinical settings. The term “isotonic” suggests that it has the same density as normal blood and contains the same amounts sodium and chloride concentrations as normal blood so that electrolyte balance will not be affected. We all know instinctively that we cannot drink sea water because it is “hypertonic” and would cause our brain to shrink up and we would die from the excess amount of sodium and chloride per unit volume of water. What is less well appreciated is that we would also become very sick from drinking excessive amounts of “free water” i.e. water with NO sodium or chloride in it. This would profoundly dilute the concentrations of sodium and chloride in the bloodstream and would not be good for heart and brain function.
By using one liter of IV saline we safely expand the circulating blood volume without affecting the sodium and chloride (“electrolyte”) concentrations. The circulating blood volume of a normal sized individual is approximately 5 liters so we are increasing it by about 20%. This can significantly help with supporting upright blood pressure and slowing the reflex tachycardia.
I also find that due to gastroparesis and malabsorption associated with dysautonomia, many patients experience a Vitamin B deficiency and greatly benefit from a dose of liquid Vitamin B complex injected into their saline solution.
Patients have reported that IV therapy has lessened their fatigued, improved gastric motility, migraines, joint pain, can often assist with calming tachycardia.”
Other Medication and Therapies
I also take many other medications including prilosec, desipramene, allegra, and depacote.
I get letters every day from newly diagnosed patients–and while you’re still always welcome to reach out to me–I wanted to list some resources that I trust for you below.
- What is Dysautonomia?
- Basics of the Autonomic Nervous System
- What causes Dysautonomia?
- Educational Materials
- Dysautonomia Research
- Dysautonomia Annual Conference
Santa Maria Medicine
- Fight Against POTS
- EDS/POTS Suport
- Beyond the Measurement (POTS, Chiara, EDS)
- Dysautonomia Darlings
- POTS Connection
- The Dysautonomia Support Group
- Postural Orthostatic Tachycardia Syndrome Group
- Dysautonomia Wellness Group
- IV Support (For POTS)
- I Hate Dysautonomia
- Zebras For Life
- POTS Support (Adult)
- Living with POTS
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