Undiagnosed With Pots Yesterday

[HopeSprings]

Oh yes, I'm definitely symptomatic. When I get up in the morning my heartrate shoots up between 120 and 140 and I struggle with it all morning and then on and off through the day. So you're saying you have an initial jump, but then it trends downward and stays down and you now go through your day without being tachycardic or feeling very symptomatic? I'd trust what you're Dr. is telling you. At the very least you're MUCH better than you were. I think I've read that normal healthy people can get that initial jump in heartrate standing up (of course I can't find that source now!) - so maybe you're just normal! I really think how you feel and function in your everyday life is the most important thing to look at. The only point I was making earlier is that the diagnostic criteria for the tilt test seems to vary among Doctors. I wasn't directing the comment at your particular situation. I'm sorry if I didn't communicate that. I know it's hard to trust this after all you've been through, but please try not to worry. People do heal from this - maybe you're one of them!

[Kellysavedbygrace]

I think this discussion thread is interesting and it solidifies the notion that we, as a community, need further clarification of diagnostic criteria. And further education of frontline medical providers on identifying Dysautonomia.

Last week I was visiting a friend in the hospital who has OI. As I sat in the room a cardiologist came in and mistakenly told her that POTS had to do with a drop in BP upon standing. Of course I was frustrated to hear as this doc happened to be in the same practice as my cardiologist. So I called my cardio doc to express concern and then forwarded via email the diagnostic criteria for POTS and NCS according to Vandy. BUT according to that criteria I don't have POTS because I also have documented hypotension along w the elevated HR. So I am reluctant to share the Vandy definition with him or any of my other local docs who are not ANS experts because of possible further confusion.

So earlier today I was reading a chapter of the text. "A Primer on the Autonomic Nervous System.". This chapter is written by Juilian

Stewart. In it he says, "While a diagnosis of POTS specifically includes the signs of upright tachycardia and often circulatory insufficiency, it specifically excludes early Orthostatic hypotension; however progressive hypotension may appear later in the orthostatic challenge.". (Chapter 108; Signs and Symptoms of POTS)

All this to say, Yogi is right on about how you deal with Dysautonomia is the same regardless of what you call it but in order for us to be taken seriously by most docs and get insurance to cover our care we need to improve the clarity and education of diagnostic

criteria.

And, Mytwogirls- how have your symptoms improved or not? As our HRs can be erratic showing an abnormality one day and a more normal presentation the next. If you haven't had a significant improvement in symptoms I too would question the undiagnosis.

[brethor9]

Good for you Rox I do think if you have primary POTS you certainly have a better chance of recovery. If it is secondary to an underlying condition ie MCAS, Dysautonomia, EDS you are in a more difficult position to recover. In my case my POTS was mild compared to the severe Dysautonomia and O/I and now diagnosed with MCAS and EDS. I have realized that I will probably never be cured but a girl can always hope

and I agree with Kelly.....it drives me nuts when my specialist says I am stable in his note.....just because at that moment in time I wasn't all tachy certainly doesn't mean an hour later I am not flat on my back from a crash. I wish they would realize how sudden symptoms can change with this illness........

Bren

[yogini]

Even though the word syncope is in the title, NCS does not necessarily mean that you faint. Another name for it is NMH. OH just means you BP drops when standing, which is a form of dysautonomia. Im not a dr but in literature, the docs seem to agree these and POTS are all part of the same family.

Kelly is right - question is whether your overall symptoms have changed/improved since your original diagnosis. If you are feeling better, that is great.

I do agree that we DEFINITELY need better and more consistent trmt/diagnosis. We will get there. In the meanwhile, I think there are effective treatments out there which can work independent of classification.

[Mytwogirlsrox]

Kelly -- I agree with what your saying. I wish there was a strict diagnosis criteria. However many people would be excluded, I had very significant changes in HR, but little to no noticeable orthostatic symptoms. I had no idea I was tachy upon standing, I just became Pre-syncopal walking through a store and my dr placed my EKG on wrong so I had inverted twaves which was reason to send me to a cardiologist. I suspect many people who don't have substantial changes, but more orthostatic symptoms would be excluded from diagnosis -- and like you said for insurance and darn peace of mind, a diagnosis is a very necessary thing for your psyche.

Interesting side note, some definitions of POTS don't include the word sustained so technically my itial surge would be considered pots.. But in the absence of symptoms what does that really mean?

For me, I feel fine, I'm productive, happy and have no limits on my activities. Ive never had any symptoms besides anxiety which is very much under control now, so the only change has been HR reduction.

Yogi-- I guess what I meant to say, is that I have some sort of anxiety related reflex fainting. I don't have any documented orthostatic hypotension other than after the nitro which is a questionable practice that gives many false positives. My Dr just said OH because of my symptoms of occasional graying out and a "surge" in hr upon standing-- which he equated with a BP fall. But he also stressed to me, that this is a very normal occurrence in healthy people.. There are many reasons : dehydration, medications, age etc...

[yogini]

If you feel fine without limitation I would enjoy it. I think there are few if any here that have that, especially without meds. It doesn't sound like you need to worry about something hidden going on.

[Monstrosity]

Good for you and thanks for posting this! I enjoy reading the positive posts like this!!!!

[bellgirl]

Yay!! Good for you; Live your life to the fullest!!