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Cleveland And Chest Pain


mkoven
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I wanted to give you an update on the outcome of Cleveland and remaining questions.

I saw a doctor who gave me the ttt. The tilt table test showed pots, with an increase of 40bpm, and some orthostatic hypotension. (This is interesting, because I think in my daily life, I more frequently experience the drops in bp than rises in hr). Hemodynamic testing showed that 20% of my blood volume pools, instead of the normal 10-15%. She also said I have hyperkinetic circulation, from maybe some sort of hyperadrenergic response. My autonomic reflexes to valsalva, the sweat test, and heart rate variability were all normal. So if I understood correctly, I am pooling execessively from some abnormality in the vasculature in my lower body, rather than a neurologic cause???

Her treatment recommendations are slight tweakings of the current regimen-- more florinef, another try at cardiac rehab, abdominal binder during and after meals.

She does not seem to believe that my chest pain comes from these findings--even the chest pain I get from prolonged upright posture. Not sure I fully understand why autonomic problems wouldn't cause my chest pain, at least some of it.

She had me talk to her colleague, an interventional cardiologist (I believe she is an ep?) , about the chest pain and the possibility of spasm. He looked at the cath films and said they looked completely normal, and thought it unlikely that spasm was the issue. But he prescribed me .1mg nitropatches to wear at night to see if they helped, thinking that it was a low enough dose to not cause too much harm. I've tried the patches for three nights now and all I can say is they raise my heart rate about 20bpm and give me a headache. No difference in the night-time chest pain.

BTW, these night-time episodes are essentially every night now.

So here's the kicker. I called his office again today to give an update. If I understood correctly, he wants me to consider undergoing another cath where they would try to provoke spasms chemically to figure out more conclusively if this is prinzmetal angina. His office will call back later. (I'm sure you can guess my reaction. I really don't want to undergo this again. Besides the sheer misery of the double steroid prep, the anxiety about the procedure itself, the hematoma I"m still recovering from, I would have concerns about how safe this is, and how conclusive the test is. Of course, I would also wonder why this couldn't have been done during my original cath, so I wouldn't have to undergo this again.)

My question would be why we couldn't continue to treat this empirically--either with a higher dose nitropatch or another doctor's plan of a calcium-channel blocker, perhaps with admission to his hospital for observation. Or perhaps my lack of response to the .1 nitropatch suggests that these aren't spasms? But why move right to another invasive procedure?

So I don't know what to think about all of this. I"m not sure why the first doctor didn't think that my autonomic abnormalities could play a role in at least some of my chest pain. I don't understand the eagerness to repeat the cath. I'll hear back from his office today.

So it seems the upshot of the trip to Cleveland is some more information on my autonomic abnormalities, but not really any new insight into the chest pain, what's causing it, and what to do about it. I want to be safe and understand these episodes if they are benign, and treat them if they may not be. But I really don't want to undergo the whole cath procedure again.

A Chicago himself told me, if I heard correctly, that provocation of spasm during catheterization has fallen into disfavor, as it can sometimes provoke heart attack, so the diagnosis is typically clinical.

What do you all think?

Thanks,

Michele

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Oh, Michele,

You are really undergoing alot of stress and tests.

Before I would undergo that interventional procedure, I might consult again with the doctor who wanted you to try a calcium channel blocker. If I understand correctly, you would be undergoing this trial in a hospital setting.

When I first came down with excessive tachycardia, the cardiologist tried verapamil (another calcium channel blocker).

BTW, how would your doctor treat you if you were indeed having spasms? Couldn't you try that?

Continued good luck going down these paths.

Lois

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I'm with Lois, I would assume for the moment that it is Prinzmetal and pursue treatment. If I didn't see an improvement after a few weeks, I would reconsider going for the test (not that I've ever had it done so easy for me to say). If the chest pains are every night, I couldn't ignore them and, stating the obvious, it must be making you tired.

I'm also wondering what they would do if Prinzmetal isn't confirmed with the test. If they have no plausible alternatives in mind, I would be even more inclined to try the calcium channel blockers (or even risk upping the nitro dose). I've had a quick look on the internet and keep seeing the mysteriously named "Cardiac Syndrome X" with a similar presentation and diagnosis by exclusion. I expect you have seen this before and I think the treatment is the same as for Prinzmetal in any case.

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I agree with you both. I would much rather try a med, even one with side effects, than undergo another catheterization. My brief poking around on the internet makes it seem that provoking spasm can be quite dangerous. I've emailed my ans doc in chicago and pcp to ask for their input.

I'm worn out. I keep hoping that I"m in the clear of something dangerous, and then there's yet something else to wonder about.

And I can't help but be a little shocked by the attitude of doctors who think a procedure like this is no big deal---for them? It's been seven weeks since the original cath and my leg is still sore. It took three weeks before it stopped hurting enough to walk normally. and then there's the risk of both anaphylaxis and repeated high (VERY) doses of steroids. Let alone permanent injury to my eds arteries. (throw in the ER trip to make sure I hadn't developed an aneurysm or fistula at the puncture site, and so on and so on.)

If I had my choice, I would never have another catheterization again. and certainly not if it wersn't absolutely necessary.

I don't know why the doc wouldn't just prescribe a calcium channel blocker and see.

I haven't heard back yet from the doctor's office today, and with the time difference, I imagine they're closed, and I may not hear back today.

I just want to put the scary stuff behind me and get on with my life.

I'll keep you posted.

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