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Doing Better


mkoven
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I don't want to jinx anything by saying this, but I've been doing a lot better in the last month. Earlier this summer, I posted about chest pain, dropping bp during exertion, and basically having to drop to the floor at a moment's notice, so I couldn't reliably go anywhere where the floor would not be an appropriate place to be.

After an extensive and excruciating cardiac workup, which was scary esp when I had an abnormal adenosine stress test and was told I had ischemia, a catheterization with HUGE doses of steroids because of my iodine allergy, ruling out heart disease, relieved but STILL feeling awful, I went to Cleveland.

Cleveland was a mixed experience while I was there. I did get a full autonomic workup, finally got a pots, oh, pooling, hyperkinetic heart diagnois. The main outcome was more florinef and cardiac rehab.

Well fast forward to now, and I'm doing much better. We are currently on sabbatical out of town (which is very nice) in Washington, D.C. I am able to walk up to 45 minutes, and I haven't been having as many "must lie down asap" episodes. I can actually go out and do things and be upright a good bit of the time. It's hard to say if this is spontaneous improvement, or the florinef/rehab combo. But i'll take it.

Also, a little insight into some of the chest pain-- though not all. I've been pushing a walker for two years, and my pectoral muscles have been perpetually contracted, as I don't swing my arms. I had a pt check out the pec muscles and they were VERY knotted up. Some of my exertional chest pain going uphill seems to be that I'm pushing the walker against gravity, which tightens those muscles even more. I still get the night time chest pain. I don't know if pec muscle spasm is the whole story, but it seems to be a piece of it. And mentally, I can deal with a muscle spasm. As a result, I haven't been to the ER in a month-- which might not seem like much, but I was going multiple times a week for horrible chest pain at night that was feared to be prinzmetal angina.

I don't want to jinx anything. I hope this is a trend and not a blip. But regardless, this is at least an example of how things can improve, even when it seems they are headed permanently down the toilet. In the meantime, I'm enjoying. My current regime is nothing unusual for an ans person--6.25 midodrine every four hours. .075 florinef, stockings, exercise to tolerance, resting when I need to, fluids and salt.

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Hi,

Congrats! I hope you continue to see relief and an improvement of symptoms! Is the PT working to help you stretch out/strengthen your pec muscles? Also, have they worked to modify the way that you use the walker to decrease reoccurances?

I hope that your time on sabbatical continues to be a good one! ;)

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