I had my follow up appointment with my cardiologist today. I was eager to hear the results since my "month long heart monitor" turned out to be a "five day heart monitor" when the nurse called to tell me that they had received enough data. The monitor ruled out any rhythmic problems that I may have, and confirmed the diagnosis that they originally thought I had: neurocardiogenic syncope.
This is a blood pressure regulation problem in which my heart and my brain have communication issues. For example, when I need high blood pressure, my brain will think I need low blood pressure and vice versa. This results in my sleepiness, exhaustion, lightheadedness, and occasional fainting.
There is no cure for it. There are 3 medications, but one my cardiologist won't give women, another I can't take because of my other heart condition (heart block), and the third would barely help and would give me horrible side effects. So my only option for treatment is to live a very inactive lifestyle, drink tons of water, and eat LOTS of salt. He told me to eat as much salt as I could handle. The only problem is that these just help, nothing will completely cure this problem no matter how hard I try to follow these steps.
Luckily, this is a nuisance more than anything. He told me that all I can really do at the time of struggle is to sit down or lie down immediately, even if it's publicly unacceptable. Let me tell you how many times I've had to sit on the floor at the grocery store or Home Depot. It's (not so) awesome. But at least I've been treating myself right all this time, ha.
There is good news. I assumed that this was a life sentence since I've dealt with it my whole life. It turns out that 99% of people like me NEVER struggle with this after they turn 40. So I only have 15 more years to go! Woohoo! I got really excited about that. I can't wait until I'm in my 40's and I know what real energy feels like! (How often do you hear anybody say that?)
Honestly, this appointment made me feel really optimistic about my situation. I know life isn't exactly fun for me. Doing the dishes is exhausting enough that I usually have to pull up a stool to sit on. But my doctor told me that one of his patients with neurocardiogenic syncope is so bad that she passes out any time she sits up. Needless to say, she has to be hospitalized. I am so grateful that I can at least walk around, even if it's only for a few minutes at a time.
Maybe I should start a count down on my blog for when this heart condition will disappear. 15 years and 2 months to go!
6 comments:
You are so amazing to be so optimistic, Heather. You are one of the strongest people I know and I really look up to you as an example. As for the salt thing, If I was in that situation, I would chomping down McDonald's burgers and fries like there's no tomorrow. I love salt! You probably have a lot more self control than me.
Having the real diagnosis, i.e. being able to put a name on the "monster", is a relief. It makes explaining things to others a whole lot easier.
Enjoy those salted peanuts!
I'm pretty sure, Heather, that the doc forgot to say that you need water, salt, and chocolate. Better fix that error right now! We're glad, with you, that you finally have a firm diagnosis. You have 15 years to go until you're 40 and I'm almost 15 years past 40 (well, really, 12 years past)! I think I remember those years... In any event, we have a grandson to get here first! I'm all for the present!
Oh my dear...maybe you can get a rascal (scooter) for shopping. Then you can beep at people in the store to get them to move out of the way!
Hang in there! Can't wait to see you this summer(ish)!
Oh my dear...maybe you can get a rascal (scooter) for shopping. Then you can beep at people in the store to get them to move out of the way!
Hang in there! Can't wait to see you this summer(ish)!
The scooter suggestion is really a good idea. I've used one (broken foot) and they're actually quite fun--probably a lot more fun than having to sit on the floor.
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