I haven’t talked much about my health. Friends on Facebook may have seen articles I’ve shared about invisible illnesses or mention of various diagnostic tests. But it’s time to start making sense of everything going on. To share what I’ve learned and what I’ve done to make this condition livable.
After two years of blood tests, scans, MRIs CTs, echocardiograms, and radiology most people don’t go through until they’re over 50, after more -ologists than most people have in a lifetime, some names were given to describe me. Two years of possible cancers or heart failures or hormonal malfunctions.
I have orthostatic tachycardia or fast heart rate, a disorder of the autonomic nervous system. I also have a form of heart disease called vasospastic myocardial ischemia. Yes, I am officially a spaz.
What does that all mean though?
Most people are like automatic transmission cars, and their autonomic systems naturally adapt and signal the body to respond as its level of action changes. Dysautonomia means that my car is a manual and doesn’t always do its job.
In a car, if you start out in a higher gear than your speed and RPM demand requires, the engine will rev and, unable to compensate, stall out. If you let the clutch out, trying to engage it, too quickly, that will also cause a stall out. Sometimes, you can manipulate the clutch and the interchange between neutral and engaged gear and keep things sliding along until your speed and engine demand is high enough to allow the gear, but it requires finesse and control of the clutch itself.
Because of the tachycardia, I always start out in third gear. If you haven’t driven a stick shift car, that’s the gear most commonly used around 20-40 MPH (though technically, gear shifting is more related to RPMs). Any exertion, and my autonomic/clutch responds like I’ve run a marathon. Heart rate shoots up, and breathing quickens to provide enough oxygen. Blood rushes to the heart.
And here we find the ischemia. 98% of people who have this problem find it’s due to a physical blockage of plaque or some other deformity. An angiogram confirmed that my heart and all its components are structurally sound. The *only* other documented cause for the remaining 2% is a spasm of the artery, though the actual origin of the misfire is uncertain. Regardless, the result is like getting a cramp in your foot or a kink in your drinking straw. The artery is physically narrowed at a point, limiting the amount of blood that can pass through. This causes a back up of blood incoming to the heart, a jump in blood pressure.
The end result is that I try to do something, and I quickly proceed through some pretty consistent phases: heart racing, shakiness, cold sweat, lightheadedness, nausea.
Unfortunately, these are all what’s known as “diagnosis of exclusion”. Which is a fancy way of saying, we’re calling it this because we can’t find anything else to explain it. All treatments surround managing the symptoms, as there’s not any real way to directly act on the underlying cause. Research is ongoing, trying to find some common causes and triggers for why people suddenly experience dysautonomia. The most helpful resource has been talking with friends going through similar problems. What helps one doesn’t work for all, so it’s a lot of trial and error.
I’m going to start exploring this journey in writing. Nutritional changes, therapies, emotions, and navigating the medical community. Feel free to come along for the ride.