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I am curious to how many times you guys have called an ambulance? I have called 4 times during pre-syncope spells---I know what is going on now. They scare me to death-extreme racing-up to 170s, all over shaking, bp extremely high, sudden tiredness, need to go to bathroom, muscle spasms all over, chest pain, inability to swallow, numb arm, numb neck and others I am sure. So hopefully we do not go through this again, but would not hesitate to call again, if it got really bad and I was by myself. Although this last time they just asked if there was anything that would slow it down -my heart rate was staying in the 140s. I gave them the magic answer--iv fluids. If I could just do ivs at home.

I am embarassed by having called them so much and am really hoping I am not the only one out there that has done this. Jennifer in TX

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Hi early on in my pots before i knew.. what was wrong (pre-diagnosis) I had 4 9-1-1.. calls over the spand of 7 months..

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I've called 9-1-1 2 times, once for the chest pains 2years ago, which then it was for gallbladder, and one recently before diag. was on toprol? when b/p went to low, chest pains, shortness of breath, and since b/p so low, my legs gave out when tried to stand.

The way I look at it is, that is why it's there for, to help.

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jennifer -

there's no reason to feel embarassed about calling. dealing with health scares is hard enough without beating yourself up about calling for help when you've needed to.

as hard as i find it to believe, i've actually never called 911 for myself, despite being told to at times. i'm stubborn to a degree that isn't necessarily good for my health. i've gotten myself to the ER on several occasions when the doc has sent me but has in fact said i should call for an ambulance. like i said, i'm stubborn (to the point of stupidity at times.)

on the other hand, 911 has been called for me - when i've fainted &/or have been too out of it to know what is going on - more times than i can count. sadly enough it's probably been around 40 times...eeks....i don't tend to keep track.

:-)melissa

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Wow, I was thinking I am probably crazy for doing that. Thanks for making me feel better. The scary part is going out by myself with my child, which I have not attempted to do and will not try until I get more control over everything. What do you guys tell the EMTS so they understand? This is such a crazy life--truely totally different way of life before this all happened. Thanks, Jennifer

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I've never called 911 or had an abulance called for me. I can see, however, why someone might do so--especially those of you who develop symptoms later in your life, and suddenly. I imagine it's pretty scary until you realize what's happening.

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I have only gone once, and would never go again, but i think I was at the er so many times I could not even count anymore. I feel dumb now knowing it is just the POTS, but I truly thought with the cherst pain I was going to die, I guess now I feel very dumb. But look at it this way, At least I am atill here! :)

One day at a time!!!!

Amy

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I've called two or three times this year but I couldn't tell you how many times I've called in the past.

Sometimes I feel guilty for calling but if I've been tachy for a long time and my heartrate isn't coming down then I start having trouble breathing. Since I live alone and can't drive at that point I have to call 911 (especially when it's in the middle of the night and you can't get anyone else to your house that quick).

Try not to feel bad...your taxpayer dollars support these services in many cases and they are there to help people. I've had a couple of times where they didn't treat me well but usually the EMT staff is nice, wanting to help.

In terms of what to tell them...I tell them I have a complicated medical history with tachycardia that sometimes needs to be treated with IV fluids and that I need to have my electrolytes checked. Since they aren't equipped to do all of that they have no problem taking me to the ER. I'll give them the diagnosis of Dysautonomia and most of the time they don't know what it is which tells them they need to take me to the ER because they know they don't know what to do for me.

If you are worried about this, one thing that might help you is on a "good day" go to the local fire station/EMT workers and introduce yourself and explain your condition and what is helpful to you in a crisis. It doesn't always work but in many cases it really does help them.

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I have never called the ambulance; I am fortunate that my husband is home with me most of the time and has taken me to the ER a few times. That was a disaster even though I went to 2 different ER's in 2 different states both treated me like a head case.

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I think many of us have the same story, unfortunately. Before we understood what was wrong, we called 9-1-1 three times--this was all post partum when my symptoms were very bad and undiagnosed. My own ob-gyn sent me to the hospital via ambulance at about month 7 of my pregnancy when I came in with a fast and irregular heart beat. I didn't understand why at the time, of course, and neither did she, but the IV I got in the ER improved my symptoms tremendously for several days afterwards.

I also of course hate the ER--although some working there probably thought I was an attention-seeker or got some kind of enjoyment out of repeated, worthless visits.

My symptoms can still scare me--but now I can call my electrophysiologist and talk to his nurse if I have frightening symptoms--I've done that once so far. She talked me through it, and it certainly was a better experience than going to the ER.

Katherine

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Talking to the fire department might not be a bad idea, as they told me to let them know what it is anyway. I feel bad because it is volunteer. I need to donate some money to them, since they have been so nice. Although I am sure they think I am a bit crazy by now :). But when you are in that situation, what do you do? When you are laying down and your heart rate will not go down, you cannot move as it only goes up, so there is nothing you can do but call 911 -- Well before you find out what it is anyway. I am going to Dr. Levine in Dallas this week. I wonder if they can write something so I could get IV fluids or something? My family dr will not do anything, my present cardio will not do anything, so I am left with nothing from the time he referred me to now. It is so terrible because you really have no options. The last time I went to the ER, they said they can repeat CT scans, but there is nothing they can do. It is a bad point when you are that sick, and the ER says there is nothing they can do. It is so hard. JenniferTX

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In the eight months before I was diagnosed with POTS, my lovely husband drove me to the ER four times--three times in the middle of the night--and my employers called 911 once. On two occasions I was kept in overnight as they saw changes in my EKG. On one occasion, the attending ER doctor was so insulting and condescending--"female problems...anxiety..wasting our time"--I reported him. On one occasion when I was taken by ambulance after my diagnosis to an unfamiliar ER, the doctor had never heard of POTS and seemed entirely sceptical as to its existence.

So, I've not had a very positive experience with ER's. Like the previous poster said, I've had more success talking with my doctor's nurse who is familiar with the symptoms and can give more pertinent and comforting advice.

India

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I have only called 9-1-1 twice, but it was because my heart started palpitating and my HR shot up past 200...in the ER I was given IV meds to slow it down. My doctors never determined if this could be POTS related or not, but they diagnosed it as SVT.

I also went to the ER once via car before I was diagnosed because I almost fainted in the mall, and that also was a waste of time because they diagnosed me with asthma and gave me albuterol inhalers to take home for my shortness of breath. Great idea huh?! Anyway I try to manage my symptoms at home if possible for that reason.

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