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Keeping Bp Stable But Low--treat Ans And Protect Aorta


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So I posted hear a while ago about my recent scare of an enlarging aorta. It was remeasured at 3.3. Today I talk to the eds geneticist on the phone again to decide where to go from here--whether we just repeat the echo in 3 months and whether to change my ans meds and exercise. I've finally found a regime that more or less works with midodrine, florinef, compression, salt. fluids, and daily exercise, and am very reluctant to mess with it.

On the other hand, an aortic aneurysm is nothing to mess with. My bp is not high-- just measured it at 115/70 on mido and florinef. But if my aorta were enlarging, they would want it lower (105/60) .

So here is my question. I don't feel like I can lower the dose of my ans meds and still function. But I would be willing to take something IN ADDITION to bring my resting bp down ten points. In other words, I' m not opposed to lower bp, as long as it is STABLE. If we lessen the mido and florinef, it will be generally lower, but also much more ERRATIC-- with scary lows and some spikes. And I'll likely feel awful. I've more or less gotten my life back in the last year and am reluctant to take a step backwards

So anyone know if it would make sense to add something like losartan/cozaar (an ace inhibitor) to bring my bp down a bit, if the doc tells me she wants it lower? (She basically said if I have an aneurysm, I'm doing everything EXACTLY opposite of what I need to be doing!!) It makes much more sense to add something like that, rather than to take away meds that work. So how does one lower bp while stabilizing the ans??? (I can't take beta-blockers).

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Well, I can only speak for myself.

I actually do better overall when I keep my blood pressure "stable and low". What makes me the absolute worst is to have mine spike up and then drop down, over and over repeatedly. I am going to be orthostatic. That's a given. However, the difference for me seems to be letting my blood pressure be low and drop 10-25 points vs. letting it be higher and drop 50 points.

I am on a regimen of catapres, labetalol, lasix and mestinon, amongst others. I list these because they are what keeps my blood pressure "low and "stable", or sort of stable. Some of it seems counter-intuitive. However, it does all work together. I need the lasix, (a diuretic) because apparently, keeping my blood pressure low means that pooling can equal massive edema for me. Edema that doesn't resolve through regular measures like lying down or keeping feet up.

You might feel really crummy for a few weeks after going lower. I had a natural "bottom out" a few years ago that really had nothing to do with meds. However, over time, I guess the body adjusts, and that's when I found that I actually did my best. Also, there's no reason to reduce quickly...I've also found that starting low with meds and allowing my body to gradually adjust certainly is the better approach.

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