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Hi,

I would be grateful for any advice on the following. I have POTS and NCS, but I am not sure what is going on when this happens. The other day I began to feel generally weak and ill and when I took my heartbeat it had dropped 20 beats from my normal resting pulse rate. I find now that when I feel bad that my heartbeat has dropped. I had to lay down because I knew that i would collapse, but although I was laying down, I still felt as though I would fall unconscious. I then made myself drink as much as I could and added some salt to the water. In all over a 3 hour period, I drank about 3 - 4 litres. After this my heartbeat gradually began to increase and I felt better. It was really scary, and I thought that I would have to go to the hospital (although I have not got a clue what good they would have done, as most of the docs don't even know about POTS).

I don't know how best to proceed with this. I would like to have a patient care programme, like they do for asthma, or diabetes so I know what I am doing. I just felt so scared, but fortunately, I was able to improve with the fluids. I really have to keep my fluid levels up otherwise I become really bad very quickly.

Is this a NCS attack? I am not sure what is going on. I also have episodes of tachycardia which are far more common, but I don't understand the slow unenven heart beat.

Thanks for your replies.

MJ

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MaryJo, I had the same thing happen two nights ago. It was awful. MY pulse dropped to under 60, which it never does, I felt horrible and thought my bp was falling too, but when I took my bp it was 210/120. The opposite of what should have been happening. I felt really awful for about 2 hours and then just finally went to bed. It has remained very low.

It used to be when my bp went up like that, my pulse did too, so I'm not sure what to make of it. I had ablation in 2003, and am wondering if I'm headed for a pacemaker now. Nothing could get me to go to an ER anymore. Only being paralyzed and unconscious. So yes, I had the same thing, but am not quite sure what to make of it. I tried to drink more fluids but felt pretty sick with it, a horrible headache from the bp rise I'm guessing.

Sorry I can't help, but I can relate. morgan

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Here to add a me too. My pulse goes low even more often than I get tachycardia, fluctuates wildly along with my blood pressure. When I feel my worst, my pulse is usually in the upper 40's. and my blood pressure goes up and down 30 points in each direction for a while. Happens most when I'm tired. Very uncomfortable. I lay in bed and drink until it passes.

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yeah, it happened to me on sunday- my pulse was 39. a classic NCS response is a dropped pulse and dropped bp- this may be what you're exhibiting, but i'm not sure.

i know that i've had a lot of slow pulses lately- and i don't just mean a bit on the slow side of normal, I mean BAD kind of low- like in the 30s. my record low is 29.

none of my doctors seem to care enough to do anything about this at the moment.

i know that even if i have a pots attack and my pulse goes way up, it always shootes down again and then dips ultra low- i get ectopic beats after a faint/bad turn. could this be happening to you, or are you having really long runs of slow beats?

the last time i had slow beats i aw a dr for, i was told it was side effect of beta blockers i'd taken.

maybe reevaluate the meds you're taking?

i sympathise though- hate the way slow pulses make me feelso heavy and tired. it's horrible . hang in there

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MJ et al -

i have definitely had times of struggling with spells of low HR (down to 30 for extended periods, lower here & there) & have been hospitalized exclusively for this reason. i too have the POTS/OI & NCS diagnoses (along with some other fun). it sounds like you went about things the right way - lots of fluids, salt, & rest - but i know it's not any fun. if this is new for you it's something worth talking to your doc about.

i agree that it would be great if we had a "how to guide" for the ins & outs of autonomic issues but while there's a lot of good info out there to read, when it comes to the day to day it's more of a learn as you go.

hope you're having a better day today.

hang in there,

:-)melissa

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Persephone,

If your heartrate goes down to 30, YOU MUST GET MEDICAL ATTENTION. I know the doctors brushed you off. I learned something yesterday from my GP. I've been having trouble getting adequate care for some muscular breathing issues. He told me that the unwritten rule is that if a patient continuously shows up in the ER with the same complaint, THEY MUST TREAT YOU. 30 is dangerously low, as Melissa just pointed out, she was hospitalized extensively for it.

It's hard not to be intimidated. Because you are young, they don't take it as seriously, you don't fit a cardiological stereotype. Stand strong! We're here for you!

Ariella

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Ive had issues with a slow HR, usually when i stand up. I often feel dizzy and weak, i drink alot of fluids, eat some food with added salt and it usually fixes it. Ive been suffering with eating issues latley which makes the whole situation ALOT worse. Im slowley starting to eat more and im off to the gym monday to start a body building workout, i will really have to fight in order to make this work, im doing it to gain confidence as its the only thing that works ( apart from the bible ). Im also young and have been brushed of thousands of times.

Feel free to PM me if you would to chat over MSN.

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