M’s story of living with POTS

I am a 51 year old woman and college professor. I started with occasional chest pain in my late 20s. It was always attributed to costocondritis, dehydration, or anxiety. My tests were always normal. This continued a couple of times a year until my early 40s. I then developed intermittent lightheadedness and a racing heart , often worse around certain times of my menstrual cycle, sometimes accompanied by migraines .

In 2008, I underwent a catheterization and a tilt table. My arteries were clear and I was diagnosed with POTS, but no one could explain the ongoing chest pain, and it was largely considered benign. My pots improved with midodrine and fludrocortisone, but I would still get frequent chest pain, especially while falling asleep at night. One cardiologist recommended we try a calcium channel blocker, and it stopped the chest pain.

Two years later, another doctor took me off the calcium channel blocker and I remained relatively chest pain free for seven years. I was told spasms were too rare to really consider. The night time chest pain returned when I turned 50, and eventually started happening throughout the day, much more severely, usually at rest. Because the standard testing had been normal, it was very hard to figure out what was going on. I experienced all the classic cardiac symptoms of upper extremity pain, burning, upper back and neck pain, nausea, shortness of breath, squeezing, etc.

I finally went to the Mayo Clinic where they did a provocative catheterization, to look not only for structural blockages, but for functional ones or spasms of my vessels. I was injected with acetylcholine, and my vessels clamped down severely, giving me a diagnosis of endothelial dysfunction and coronary artery vasospasms.

We are still trying to find the right combination of drugs to keep the spasms manageable. I had hoped this would be a simpler process than it has been. We don’t have a good answer about why I have this, as a 51 year old woman with minimal risk factors .

I do have an underlying hereditary connective tissue disorder that may somehow be connected. We also don’t have a great explanation for how POTS and spasm are connected. It has been challenging to have a “zebra” diagnosis about which so much is unknown. It has also sometimes been hard to be taken seriously as a (somewhat) relatively young woman. I travel with a cardiologist’s note, in case I turn up in the emergency room, so they understand what I have and what works (iv nitroglycerin).

I have found tremendous support through online groups. It isn’t easy living with a chronic and unpredictable illness. I have had to turn down a number of professional and personal opportunities this past year, because the spasms were just too frequent and unpredictable. I try to stay aware of possible new treatments and advocate for myself as best as I can.

My local cardiologist has fortunately stuck by me, and is a great local resource, even if I have to continue to work with specialists at Mayo. I currently take high doses of short acting verapamil, cialis, isosorbide dinitrate, l-arginine and lipitor. Cialis and verapamil have been the most helpful. For rescue, i have sublingual spray and nitroglycerin paste. I still have daily episodes, but on this regimen, they usually respond to a couple of sprays. I try to exercise daily to keep my own production of nitric oxide up. It is certainly not something I would have chosen. I have found the writings of Toni Bernhard on living with chronic illness to be very helpful.

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