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proper diagnosis before drugs...

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I just had my three monthly checkup with my cardiologist on Thursday. He wasn't there and I saw a research assistant, who I thought was great - had read up on everything and was very interested. I've been tried on quite a few medications so far (beta blockers, anti-depressants, Fludrocortisone, verapamil), all of which have made me feel worse - this seems to be common.

What interested me, was that the research assistant though we should monitor blood pressure changes before trying me on anything else. He suspects my bloodpressure is not too bad; I get a tachycardia of typically 150-180 when I stand, within about 5 seconds, but I never faint. I can understand why my cardiologist tried treatments straight away, as I was pretty desperate for something to make me feel better, but I think drugs such as fludrocortisone are more directed at correcting blood pressure, and might be inappropriate if you don't have a problem there. With me, I had pretty crippling cramps when I took a tiny dose of this.

Just wondered if anyone else had thoughts on this, or ideas about what tests you should have before starting treatment.


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I agree with you that we should have more tests to find out exactly what is wrong with us before starting new medication but it does not seem that this is the way doctors are working. Usually they do a TTT, get the basic POTS or NCS diagnosis and start the trial and error period of medication.

That's what the doctors in my area do!


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I'm off to a Dr appt so I only have a minute to write but wanted to say a couple of things.

1- The Florinef may have been related to your cramps. If you take florinef you should have your potassium level checked both prior to starting and on a regular basis because Florinef can cause your body to deplete Potassium. The way Florinef works is it causes your body to retain salt and thereby fluid. Many people with orthostatic problems (shifts in BP/heart rate) need extra fluid. By indirect effect the kidneys release more potassium than sodium when on Florinef.

2- Tilt test may be helpful but be aware there are many false positives and false negatives with this test. It is a tool to help diagnose but is not a definitive answer.

3- If you are having higher heart rates with normal blood pressure readings that may be inidicative of something closer to POTS vs. NCS

4-You would need to be off all meds for a couple of weeks before getting a accurate Tilt test result.

5- When I was at Mayo clinic they did a 24 hr. blood pressure monitor test--similar to heart rate monitor only it was blood pressure. This is the only place that has ever had the equipment to do this but I would ask your Dr if it's a possibility.

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Wow, poohbear's response was great. I agree 100%.

Beyond a TTT that will give a helpful snapshot of what your bp and hr may do in different positions, there are no tests that will show in advance whether a medication is going to be helpful for you. Unfortunately it is generally trial and error. But not all POTS patients are on or need medications, or find they help. Increasing fluids, salt, physical therapy/exercise and using compression are examples of non-med treatments that can help a lot.

Take care,


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I agree with poohbear and Katherine. I had a 24 hr blood pressure test that also measured heartrate, so that could be a helpful test for you.

The HR and BP issues are often linked in POTS patients. One of the theories is that when we get a fast HR, it's because the heart is working hard to maintain BP and pump blood to the brain. So even if your BP is "normal," things like fluids, salt, compression hose and meds that increase BP like florinef and midodrine can be helpful to take off some of the workload. My BP is usually 90/60 which is considered normal (slightly low). I have found that my HR is a lot more stable with fluids, salt, compression hose, etc.


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I agree with other posts & think it's great that you liked the fill-in for your doc...always a nice thing!

I know for me personally BP & HR are very tied-together....so like Rita explained, taking a med to help with BP in order to help with HR isn't as odd as it initially sounds. That said, finding our as much as you can isn't necessarily a bad thing. I think there's a nice balance between finding out the whys & diving into treatment & so often it seems to tilt to one extreme or the other...

Let us know how things proceed!


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