Er Trip- Relieved And Frustrated-vent

[mkoven]

For the past week or so, I've been in a bad flare. I've been fighting fainting, breathless, chest pain. I"m used to flaring around my period, but it's been over now for a good four days and I can't get back to my baseline. When I got to work, esp. later in the day, I have to talk to people with my head between my knees to stop the chestpain. Walking around makes it worse too--maybe because I'm upright? Falling asleep triggers it, as I guess my bp drops, triggers chest pain, breathlessness. I ended up going to the er last night just to confirm that this is a worse version of "same-old-same-old." (Of course, whenever I'd mention to anyone "normal" that I had chest pain, trouble breathing, and wanted to faint, they'd look really worried and ask why I wasn't in the ER. This is so much worse for me than usual, and unrelenting, I agreed. Though I feel kinda dumb.)

The doc seemed to think this sounded line my ncs, which he said he usually only sees in 90-year olds (thanks!), and thought would get progressively worse (really???). To be safe, he ordered the standard cardiac bloodtests, ekg, telemetry while I was in the er, chest xray, which he expected to be normal. Just to be safe. No stress test, as I had a normal one a year ago, and they're such an ordeal, as I have to do the chemical one. I was released with a 24 hour holter monitor, to catch the weirdness when I sleep. Luckily I could reproduce my symptoms for him, while hooked up to telemetry, by going from reclined, to sitting, to standing. So he saw me feel crummy when upright, with chest pressure, hard to breathe, wanting to throw up, greying out. He said there were more swings in my pulse than typical, but otherwise, looked like a normal rhythm. He said he doesn't understand what would be causing the chestpain when I'm upright. Diagnosis-- near syncope, atypical chest pain.

So I'm relieved to be told that this is nothing new. I'm really frustrated that I'm in this ncs funk, much lower than my baseline. And I"m supposed to get geared up for xmas-- shopping and travel, in the midst of all this??? I'll do as much shopping as I can on amazon. But we're driving from Illinois to Virginia next Friday. Granted, we do it in a ncs friendly way-- minivan, seats collapsed, me reclining, but it's still exhausting. And then I'll have to explain my weirdness to family that has never seen me this symptomatic. Sorry, just venting. I don't want to be worried. It is good to be reassured. But it is really hard to feel safe, when the symptoms are so extreme, and no one "normal" can relate.

[deucykub]

Hi, mkoven:

I'm really glad that you went to the ER to get your symptoms checked out. It's so important not to ignore new symptoms just because we can dismiss them as dysautonomia. I got in touch with my doctor when I started experiencing chest pain that radiated into my left arm and neck. After getting it checked and confirming the EKG was okay, now I just live with it.

It must have been pretty scary for the doctor to tell you he thought this was going to get progressively worse for you. How did/are you take/taking that news? Just remember that no one seems to understand this "stuff," so please try to hang on to your hope.

Your upcoming visit with family sounds like it will be a great way to spend the holidays - even if your body will pay the price. It really... well, the only word I can think of in my fog at the moment is "*****," so... ***** to have your family see a crash. I hate having loved ones see me like that. But I'm sure they will understand and help you take care of yourself. Some people get true joy out of helping others, and if you have one or two of those in your family, then just let them and repay the favor some day when you can.

I hope that made sense, lol, my brain's switch seems to be stuck in the "off" position!

Edit: hmm, that wasn't a swear word, but I guess the board edited it out. I guess you can use your imagination.

[mallen1]

It's so important not to ignore new symptoms just because we can dismiss them as dysautonomia.

Excellent point. A few years back when I was still working in hospital as a resident (after my plane crash, before my back surgeries) I started getting belly pains and feeling unwell. I figured, nothing new - went about my business as it got worse. I always have GI problems. I closed the door to my office out of embarassment. Then I thought, "great, they'll find me dead in here".

Forty-five minutes later I had an emergent appendectomy.

-Mark

[mkoven]

Thanks, you guys. It is really hard to tell when it's an emergency when the standard symptoms are so extreme. What are we supposed to get used to and live with??? I felt a little stupid going in, but I"m glad I did. The er doc did ask what was new this time-- and I guess it was the severity, frequency, and unrelenting nature of the symptoms, which are not my norm-- and the bit about having it happen reclined too. So I guess the rule of getting new or worse symptoms checked out applies.

Apparently the tech at the er neglected to turn on the 24 hour holter monitor, so nothing recorded. arrgh. She was nice enough, but I hope she gets a good scolding. What the ???

I'm now on an event recorder for 30 days, that turns on automatically when there's something irregular. That's somewhat reassuring. It's gone off twice on its own since yesterday--once for no reason I can understand, as I felt fine, once when I started walking faster through the snow. But when I called in, the people on the phone weren't concerned. But they can't tell you what it shows-- only if you need to call your doctor.

I"ve pushed the button myself when I've felt faint, but none of these times has it triggered itself-- which is interesting. The er doctor stressed that these things don't pick up bp, which is probably my main issue. And I think it only triggers bradycardia if I drop below 50 and tachycardia if I exceed 150. My bp has swung between 80/40 and 150/100 in a short period, and maybe that's what I'm feeling-- the sudden dips, and then the surge as my body tries to find middleground and overshoots?

It's a little annoying that you can't call in the events on a cellphone. and apparently our house cordless phone doesn't work either. luckily we still have an oldfashioned phone with a cord-- but I'm sure a lot of people don't!

[ajw4790]

Yeah, I too am currently doing the same type of heart monitor. It is annoying to call it in, and yes not being able to use cordless or cellular phones is annoying! I don't have a phone line at my apartment, so I have to wait for when I am at home with the folks for the holidays. I think that mine have have gone off once and I have had it over 10 days. I kinda think that part of the monitor at least on this one isn't that reliable.

It doesn't even do anything if one of the electrodes are no longer on me and are on my shirt!

So, I hope it works, and it wasn't for nothing! I also wish that it would pick more up, like PVC's etc...

Anyways...

Good luck with yours!

[Donna F]

Dont know about any of u, but Ive gotten leary of Ers, now if i go in with anything guess they think im crazy, they tell me we know u have a pain dr, which i never denied also that it is apparent and have been brought to their attention that i have been a reg in er at least monthly over the last yr, and usually get nausea and pain meds, and bad part is the docs there dont even understand nor try to listen about whats goin on, they told me it was normal to have bp of 155/100 and hr of 160, i was like freaking my rates before octwere ALWAYS like 80-90/48-60 tops and hr well pacer kicked it at anything below 60 but i know sit here because i feel like they think i want drugs, when if anything i want off some of this crap, does anyone else feel theyre treated like the "regulars at er" and not really evaluated at all?

Donna F