At What Point Do You Go To The E.r?

[Lemons2lemonade]

I used to go whenever I had wacky bp or bradycardia. Now, if I'm feeling like I need to go in, I just go to urgent care to get an ekg and a bag of fluid. To those who go, what do they do for you?

[julieph85]

I went one time when I first got pots and I will never go back unless I'm dieing. Only thing they did was hook me up to an EKG cause I was tachy. They told me straight out I was clearly dysautonomia and there was nothing they could do unless I was having a heart attack or blood clot. One time I also went to patient first for severe thirst and high Bp. They literally told me the exact same thing. Lesson learned.

[bunny]

Sadly, I've never found the ER helpful for anything but a bag of saline and that's if I can get to see them. I went twice when my heart was doing some very unusual things but at the end of thousands of dollars of testing, nothing found. The one time my heart was making an audible click which you could hear from about 4 feet away. They even asked me when I had an artificial heart implanted and who was the surgeon because they couldn't find a scar. Only problem -- this was my real flesh & blood heart doing this. Nothing ever found.

ER wait times are 6-12 hours on a good day here. ER staff varies widely from unknowledgeable and cruel to having a clue and apathetic, but never competent & caring. Sadly, I'm better off riding it out unless there's obvious signs of something major (heart attack/stroke).

[sue1234]

I went one time when my blood pressure was around 180/110, heart somewhere around 130, and hugely hot. That was a random thing that happened after I had gotten out of bed. The ER doctor was very nice, but we didn't know what was going on, things calmed down, and they did labs. I was then let go. A week later I found my cortisol was high, but that was the only abnormal lab.

Even though I had a decent ER experience, I have never gone again in 6 years. I tell my husband often that other people would be at the ER for how I'm feeling on a lot of days. And, these are just my normal bad days staying at home. I can't drive, can't shop, etc. as I don't want to provoke worse symptoms.

[MomtoGiuliana]

I have gone for IV saline a couple of times over the past 10 yrs, once when travelling and not near my doctor (and they tested my electrolytes and found my K+ was low and gave me potassium supplement) and this has been helpful, but not sure all ER's will understand POTS and provide what is needed and refrain from unneeded tests. Part of the problem is that if you arrive in the ER with symptoms mimicking heart and lung problems, etc they have to protect themselves from liability and conduct a lot of tests. Ideally we would all have specialists we can call when we are having flare-ups who can provide the help needed outside of going to an ER.

[Sif]

I went a couple of times before my POTS was diagnosed with chest pains and tachy because I was scared, my GP was clueless and I didn't know what else to do. I was admitted both times for investigation and my POTS got diagnosed on my second admission. I haven't been back yet, I just stick to my bed for a few days and drink a lot when I get really bad. IV's bruise me really badly and I've seemed to be able to pick myself back up without having them everytime so far.. fingers crossed I stay that way!

[GingerA]

Before being DX I would go if my heart was racing. Once I went and my heart was beating 230 per minute. But other than keeping me from having a heart attck there was nothing that they could do so now I don't bother unless I think I am going to die.

[Brye]

I really try to go to my primary doctor or cardiologist if possible. They are sometimes willing to give me over the phone advice that has taken care of my concerns. Anything to save me a trip to the ER. Sometimes it's just a med that needs tweaking a little and ER doctors won't normally touch that!

Brye

[Alyssa]

I only go if I hit my head too hard during a syncope episode or if I am having spasms in my throat that are leading to asthma attacks. Other than that, I avoid them as much as possible as they're pretty much useless.

[heissovereign]

The only time I go is when I have my spells where i faint and stop breathing, mostly because my husband can't help me and I just wake up in the ambulance after having oxygen.

I usually need oxygen and saline and they test me, tell me dysautonomia and send me home.. Me and hubby try to just stay home unless that happens. mostly because I am unconscious and not breathing. They haven't explained this one yet..

I wish I could just go sometimes and get saline because I get so nauseous with drinking on my own.

[ramakentesh]

generally if im in the mood to be treated like a psych patient I might go, but otherwise Id sooner die. And I never had yet.

[julieph85]

generally if im in the mood to be treated like a psych patient I might go, but otherwise Id sooner die. And I never had yet.

Lol, so true

[Darlene]

they don't do anything

[puppylove]

I have only gone once due to terrible stomach pain that lasted three days- longer than normal. They tested to see if I was pregnant ( at 15 lol ) and told me it was just POTS and there wasnt anything they could do.

[ramakentesh]

Oh I went once for a severe flare up of Ank Spond and they found I had mild autoimmune hepatitis. I wwas treated like the poorest dear of a patient that had ever lived having such severe disease at my age (even though I told them numerous times that ank spond is like a party compared to even moderate POTS)...

[potsgirl]

I had to go to the ER twice in 8 days. Did I mention I really, really didn't want to go? The first time was for an excruciating episode of occipital neuralgia where I didn't sleep for days, the second (three days ago) was when I had a seizure in the shower while I was washing my hair and then passed out in the shower. I hit my head pretty hard and was out for awhile. The ER did a CT scan, gave me fluids and pain meds, and took me seriously, so I guess that's a bonus.

[jenglynn]

I've had to go in a couple times over the last year for non- autonomic related things: appendicitis once and a bad knee dislocation I couldn't get back in place myself after lots of trying!!! Other than that, the ONLY time I go in is for syncope related falls where I've had head trauma and need staples/sutures, which is more times than I care to think about over the last 6 months or so. I went in one time before I was diagnosed because I felt horrible and couldn't catch my breath. My shortness of breath was such a scary symptom to me in the beginning. I was sitting at my desk at work (actually work for this hospital so it was easy enough to go) and gasping for air it seemed and couldn't talk because I "thought" I had no oxygen. Of course, my oxygen and EKG were normal so I was released with an anxiety diagnosis of course.

The doctor was so rude and condescending to me and made me feel like a complete idiot for wasting his precious time. I had been having quite a bit of syncope as well and when I mentioned that it was of course "You are getting up too fast" and I was hyperventilating due to my anxiety problem and he told me I didn't need the ER I needed therapy. If he would have BOTHERED (or ANY of the doctors from the ordering MD to the cardio doc I'd seen for my "unexplained but anxiety, nervous personality induced syncope") to look at the results of the Holter Monitor I had worn for the whole previous months then he would have seen that every episode I recorded accompanied tachycardia (one as high as 220) but most in the 140-180 range and that my heart rate was all over the place while I wore that stupid monitor. It wasn't until at least 3 months later at a hematologist appt. to discuss my anemia did a doctor really show real concern and take me seriously. He told that whatever was wrong had nothing to do with my low ferritin levels.. He could see how labored I was to even talk to him. He listened to my heart, sitting (back then it would be normal sitting, not anymore and it was 78) then he had me walk around the hallway and I got back, breathing more labored, and HR was 156. Just about doubled... He started asking cardio questions and I told him all my tests had been normal- "Well, for my peace of mind I will just double check them." he said. EKG- normal. Echo- normal. Holter- he looked at me with this look I will never forget and told he he didn't know if it was normal or not but no one had EVER looked at it. Keep in mind, I'd had it done 4 months before! Sure enough, he opened it to find out that it certainly explained a lot. I think about that so often- this was a doctor I went to see for mild anemia. He didn't HAVE to go the extra mile but he did. He was so compassionate and really CARED about why I was feeling so sick, was so pale, losing weight, and fainting and so short of breath I could hardly talk. I had never seen him before or since but if it wasn't for him, who KNOWS how long I could have on with that lone anxiety DX and depression DX they were so eager to slap on me. I know I totally digressed from the ER topic (as I usually do- I'm so isolated every day and lonely- you guys are really the only ones I "talk" to every day lol).... But just the differences between how I was treated by the ER doctor who had access to the same info as the other but chose to write me off without listening to me.

Like I said, I work at this hospital and I know a lot of doctors, many are friends. They generally want to help but are under so much pressure that it makes it difficult. And there are a LOT of people like us who feel the same way about ER doctors and a lot of people NOT like us who abuse the ER system... So they can be just as skeptical about us as we are about them. Intellectually, I know this. I know most doctors do the best they can given the guidelines they have to work within- but it only takes one bad experience like many of us have described to make us feel that way. All I can is NOW IF I go I to the ER for staples, CT scan and concussion exam after syncope, I get the Princess Treatment. They LISTEN to everything I have to say now. Funny how that works after a doctor or doctors mistakes are discovered

[mully2014]

Haha sooo true that they treat you like a psych patient!!! I used to go in when i was passed out for five+ minutes (something my cardiologist suggested) or when I got injured (normally head) or if there was breathing problems.

Now I don't go in unless my cardiologist says I need to go in and my parents drag me there. Being there can make a person even more miserable!

[DoozlyGirl]

Haven't been to ER in 27 months. Went in for 200/110 BP, awful headache, blurry vision, flushing. Got saline, and a head CT, and a two day "get out of work" pass. Told to follow up with local PCP. When I mentioned my primary doc was located 90 miles away, I got a lecture how "there are good docs in this town, so find a new one". It didn't seem to matter that I have a complicated medical history, really like my PCP and just recently moved to this new town. This "medical advice" is also in the ED report.

Before that, my first experience with anaphylaxis (flushing, syncope, angioadema, severe confusion, hives, tachy and breathing issues) landed me my first and only ambulance ride during a business trip to Scottsdale. Over a hundred of my colleagues watched me from a balcony overlooking the patio where I collapsed. Don't remember much of that event, except "praying that the paramedics not expose too much of my chest to put on the EKG leads". "Please don't rip open my shirt, please don't rip open my shirt." Funny, I thought I was dying, but I was worried about my vanity and having my colleagues see my in full blown hives.

And a few years before that exciting business trip, while at a leadership retreat in the middle Maryland (or was it Virginia?), I had 14 syncope events/seizures where I had out of body experiences and couldn't move or talk for up to 5 minutes each time. My colleagues were advised to drive me 60 miles to a DC suburb, where the hosptial had access to a neurologist and a CT scanner. I did get a head CT, EKG (not EEG), xanax and anti seizure meds with my 2 bags of saline.

After what I read on this site and the masto site, I pretty much need to top my previous scenarios to even consider a trip to the ED.

[peregrine]

Neurologist told me to go only if I pass out for real (as opposed to just graying out which has happened before) from standing just to make sure my head is fine. So far, no visits.

[fiona-jane]

I also only go if i feel at risk of imminent death- last time i went for my PoTS (but i was undiagnosed then) was in 2009. i had bad tachycardia and chest pains, dizzyness, shortness of breath etc and after my initial assessment (basically they just asked me questions and gave me a ECG that lasted no more than around 10 seconds so none of the skipped beats etc were picked up) i was made to wait back in main reception, totally unsupervised, for 9 hours. for at least 2 hours of that i was unconscious and not sure if i was asleep or i'd blacked out, i was out for so long i snapped my thermoplastic wrist brace by leaning my head on it (and that brace could take quite a beating before any cracks develop).

there is no drinking water available in the main reception, or any food. to get water i had to walk into either the majors or minors departments and carry my water.... while using crutches. the walk was a good 200-300 meters. and at that point i could only walk around 30 m (less now). and no one would go and get me some, no matter how often i asked. was just told that they cant leave their desk so there was nothing they could have done.... they had phones but clearly had no idea how to use them to call a colleague to give me a hand. after around 6 hours i went and got my own, and passed out and was left on the floor...when i came to nurses were just stepping over me!

should have had blood tests and a longer ecg when i arrived so the team couldn't do much when i finally got to see them, i had to then have all the necessary tests and wait for the lab to process my bloods.... and then was just discharged cos they didnt know how to help me. finally got out of the hospital at around 2am (after going at silly o clock in the morning) having not been able to eat or drink for best part of the day. i was livid!

i clearly know more about my condition than they do and so theres no point going to A& E with a PoTS related problem that i cant solve on my own.... if i dont know they certainly wont know!

oh, and when i went with a recent dislocation that i was struggling to fix i was told that if its a recurring problem then its not an emergency and i cant be treated by them. so now when i go i rarely get past the reception desk- staff come out and tell me i should go and see my dr and they wont treat me. even if its 7pm on a friday and my drs surgery is closed. and then wait 2 weeks for an appointment. so i'm expected to leave a joint dislocated for up to a fortnight.

i HATE hospitals. especially A & E departments. so i'm drinking electrolyte fluid by the bucket load to hopefully mean i wont need IV saline in the near future... and eating a mainly liquified diet so my guts wont pack up (i have gastroparesis) meaning i need to be tube fed.... soooo dont want to go into a hospital for anything for a very long time!!!!

fi

[Crow]

I did too much one afternoon & then couldn't stop throwing up.

Took several zofran IV's in the ER to get me to stop. My Dr looked about 14 years old LOL & her boss had never actually seen someone with Ehlers Danlos so came in to talk to me. They were nice but I waited about 6 hours to be seen. Hospital rhymes with "anderbilt" LOL so they had my info from the clinic.

[bensman]

I was just in the ER this weekend. I hadn't been there for about 7 years and won't be going back anytime soon. They do not understand my illness (POTS and MCAS) and look at me like I am a nut case. So unless I am bleeding to death, I told my husband not to take me back.