faint factory

I know this is quite common, but would like to get a better picture.

In my case it was starting meds that made me notice this. I went from being able to feel my heart beating in my chest constantly to not being able to feel it even when concentrating, and it is so weird. It's strange to get a taste of what "normal" people feel like.

I get that all the time. I call it a "catch".

If you're into doing home tests, have you tried taking your pulse supine (after being at rest for at least ten minutes), and then after standing once a minute for a few minutes? Try that, especially in the morning when you haven't had a chance to hydrate. Do it with someone nearby if this sounds like something that will bother you/make you lightheaded. It sounds silly/like a poor man's tilt, but it was how I figured out that the doctor must have missed my large pulse increase in my tilt. I requested the records and discovered I was right. Have you tried increasing your salt intake to see if it changes anything?

Good luck, enko! I look forward to congratulating you.

Thanks guys! Ha, I know it's weird to be congratulated, but when you already know something's wrong, that label means a lot. Especially when you need it to get the treatment you need.

I want to cry tears of joy. Today my diagnosis of NCS was amended to POTS and NCS. I was taken off metaprolol, which made me miserable, and was prescribed florinef and midodrine. I also asked about getting a handicap placard for bad days, and it sounds like they're open to it but would like me to see how the new meds work first. So nice to not be told it's psychological.

Maybe I'm misunderstanding, but where does it say you can't have a high BP? All I see is that it does not fall 20/10 mmHg.

I am getting from here: http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788 that the diagnostic criteria, at least at Vanderbilt (which I understand to be respected in the dysautonomia world), includes that 30 bpm increase benchmark that you see for POTS diagnoses and the terms are used interchangeably. Do other doctors consider OI to be the symptoms of POTS patients without the 30 bpm increase? My current on-paper diagnosis has been amended from NCS to "OI, possible POTS" pending my autonomic test results and review of my tilt, so that's why I ask.

Chaos, thank you very much. That helps a lot.

Thanks - I saw your thread, but remain confused. Ha. Does being sent for the testing mean they're trying to target medications properly? Or if it all comes back normal, do I not have POTS at all?

I will be going through autonomic testing this week, and I'm confused about its purpose. Is the purpose to rule POTS in or out, or is it to see if there's some other autonomic problem causing POTS? This is for the testing other than my TTT, which I've already done. I'm basically confused as to whether they're trying to get to the bottom of my POTS before changing my medication, or if they're questioning whether I have POTS. I did a search and found a lot about what to expect, but I remain confused about the purpose of going through this.

By the way, you all will get a kick out of this. I went back to the doctor because I passed out again while on metaprolol, and he refused to change the dosage or make any other change and advised me not to sit or stand for any length of time and to come back in a year. Gee, thanks. Needless to say I have an appt with someone else next week.

I had a tilt table in Jan and finally got officially diagnosed with NCS after passing out within three minutes and experiencing asystole for 15 seconds. I did a lot of research and became suspicious that they missed the connection to POTS, started taking my pulse and kept coming up with spikes of 29-30 bpm upon standing. I requested the tilt records and sure enough, I spiked from 80 bpm to 110 bpm before fainting/asystole. So, safe to say I also have POTS given the 30 bpm spike or am I missing something? Frankly I'd be more satisfied with that diagnosis because it better explains why I have a wide range of symptoms and experience general malaise so often.