After a month of wearing an event recorder, an initial appointment with a cardiologist and a subsequent tilt table test, we now know why Callie gets dizzy often and sometimes passes out.
It seems there are a couple of regulators (in the form of nerves) that control the heart. One tells the heart to beat faster and the other tells the heart to slow down. Callie’s nerve that tells the heart to slow down is overactive. In other words, it goes overboard in telling her heart to slow down. Not only does her heart slow down, but her blood pressure drops as well.
And the main thing that she does that can cause it is just to be upright. This is why the tilt table test can be used to help diagnose it.
In the tilt table test, which is done at the hospital in an outpatient surgery room in the heart catheter lab area, they put you on a table lying flat, strap you to it so you can’t fall. There is a foot support for when you are upright. After a few minutes, they tilt the table to be vertical, so basically, she was just standing with a table at her back. Without any provocation (sometimes they inject meds to try to make things happen), Callie’s heart rate dropped to 30 and her blood pressure dropped into the 60s. She was in a lot of pain (as is what happens when she passes out) and was very hot and broke out in a complete sweat. She said she wanted to pass out to escape how she was feeling but she did not go all the way out.
In her case, they are treating this now with a blood pressure medication which, ironically, is designed to drop the blood pressure. Go figure. She’s on a very low dose and they will not increase it since her blood pressure tends to run low. It has helped reduce the frequency of her dizzy spells and was actually awesome for the first 5 days. I am wondering if she has grown tolerant of it like she has other medications and it’s not working so well for her. The doctor’s best advice is for her to stay very hydrated. That’s very hard to do when she cannot drink artificial colors or sweeteners or pop. She likes tea but it is a diuretic and would kind of defeat the purpose. She also is still taking the water pill that she was on for the pseudotumor so that doesn’t help her stay hydrated either.
Never a dull moment with this girl.