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margiebee

Good News! - Got Autonomic Test Results Back

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So today I got the results of all of the tests I got done back, QSART, hemodynamic and breathing. And apparently, everything there was completely normal? So while I do feel a bit ridiculous that I had all that done only to find out its completely normal, and I am a bit confused by all of this, I am glad that I seem to be "recovering", at least for now.

I asked my doctor if my positive TTT could've been a fluke, and if all of this was for nothing and I don't have POTS all along. He said that no, there's really no way to "trick" the test, it can't all be in my mind and I was/am experiencing what is technically POTS. But the tests showed no sign of any autonomic dysfunction, so I guess I may never know. I have made some lifestyle changes that seem to have contributed to this, including a pretty strict exercise program, mindfulness practice, etc. I am feeling so much better lately, and I'm so grateful for that. I suppose I'm just confused on how I could have POTS and then somewhat suddenly have it just about disappear. And I feel silly for putting so much effort into trying to figure out the cause when there apparently is none.

Anyway, just wanted to give an update, that I am well and hopefully will be trying to move on from this now, whatever this was! Guess it teaches me to have faith that things can get better. And thank you all.

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This is really good news. From all that I have read, if there is nothing underlying, you have a much easier time recovering from POTS. I am so happy for you. Stick with your exercise and diet changes. This is very encouraging. Keep charging ahead with your life.

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Don't feel silly! You were smart to try and figure out the root cause from the beginning. If it hadn't gone away, you'd be so grateful to yourself for that effort. Congratulations on the negative tests.

Does your supine to standing pulse still jump? At Mayo, the only test that showed autonomic dysfunction in my case was the supine in a dark room for 30 minutes versus standing blood catecholamine levels.

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It still jumps a little bit, but its an increase going from around 75 to 90-100 rather than 75 to 150. Huge difference. Really. I haven't had catecholamine levels drawn but my doctor says that as long as I can control it with what I'm doing we don't really have to investigate further into that.

Honestly I think the diagnosis was the "treatment" for me, because from that I was able to figure out what I needed to change - the right exercises, diet changes, de-stressing, etc. I'm sort of partway treating for adrenal fatigue as well because I have low-ish cortisol. I think all of this plays into it. But I would've never known what to do if I had never heard about POTS. So I suppose maybe I'm just one of those people who can treat it with lifestyle treatments. I also had the "typical" kind of onset with puberty that they claim can get better with age so all in all it makes sense.

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That's wonderful news margiebee. I'm so very happy for you. It's such an encouragement to others that recovery is possible. Enjoy moving forward with your life and continue applying all you have learned to reach this point.

Janet

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Not to feel silly. I think I remember reading in the past that at least 50% (??) of POTS cases don't have positive results on the autonomic reflex screening tests so you're not alone. Not sure if it was that statistic exactly but it's not uncommon at all to have normal results on the Qsart and other tests and still have POTS symptoms. I remember the docs at Cleveland telling me that as well a couple years ago when I was there for testing too.

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My understanding was that having the Qsart and the other tests you mentioned be normal means you don't have autonomic neuropathy but that doesn't mean you don't have POTS. It seems like it might be a good thing though as perhaps it means you're more likely to be one of the ones who will recover and move on to having this all just be an unpleasant memory! Sure hope so! :)

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I think its more just a definite sign that I'm entering a recovery period. I know this will always be an underlying thing that I'll have to keep doing what I'm doing to control, but the fact that I've almost eliminated my tachy just with exercise and other natural treatments is definitely encouraging. I do actually still have drops in BP that are sometimes symptomatic but its nowhere near as bad as the full on 150+ heart rate episodes I was having!

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Guest Hanice

Woo hoo at least some of us are getting back to normal! Good luck girly! Keep doing exactly what your doing! But please share your dietary secrets with the rest of us!

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Great! Wonderful to hear!!! Enjoy life!

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