Please Share Experiences with Emergency Medical Personnel

[shoshan]

Hello!

I am involved in organizing a class on dysautonomia for EMS (Emergency Medical Service) providers. I'd appreciate if you all share any positive or negative experiences you've had with the EMS system or providers, so I can gear the instruction to the needs of the dysautonomia community. Have you ever needed to call for emergency medical assistance? Please describe your experience. Did the providers know anything about your form of dysautonomia? What information and/or sensitivities do you wish the providers would have had when responding to your call?

Thank you!

[CallieAndToby]

Hello. I'm going to send a private message if that's okay. 

[DizzyGirls]

The first time my daughter went to the ER for what we later learned was POTS was a real eye opener.  My daughter was barely conscious, everything was blurry because she was very tachycardic and in a constant state of almost passing out.  The only reason she didn't pass out was because she was laying down.  The doctor she saw that night we found out from one of the young residents, that he literally wrote the book on emergency medicine.  He was the author of their emergency medicine curriculum that they used in med school.  So, we had a better start than most, but all he did was take her bp doing a poor man's tilt table test, gave her a bottle of water, and said, "go to a University hospital because no community hospital would ever have doctors that would understand, let alone know how to treat a complex condition."

[shoshan]

I'm so sorry, that sounds awful!

[MTRJ75]

2 hours ago, DizzyGirls said:

The first time my daughter went to the ER for what we later learned was POTS was a real eye opener.  My daughter was barely conscious, everything was blurry because she was very tachycardic and in a constant state of almost passing out.  The only reason she didn't pass out was because she was laying down.  The doctor she saw that night we found out from one of the young residents, that he literally wrote the book on emergency medicine.  He was the author of their emergency medicine curriculum that they used in med school.  So, we had a better start than most, but all he did was take her bp doing a poor man's tilt table test, gave her a bottle of water, and said, "go to a University hospital because no community hospital would ever have doctors that would understand, let alone know how to treat a complex condition."

I've always felt it was a small victory when I could get the ER personnel to acknowledge there was an actual physical condition, even if they had no idea how to treat it (which is always the case in my community ER). I was once told by an ER doctor that 98% of the time, it's just anxiety (after offering xanax and a psychiatric referral). I asked him what happens when the other 2% show up? He never came back into the room. 

[Pistol]

2 hours ago, DizzyGirls said:

and said, "go to a University hospital because no community hospital would ever have doctors that would understand, let alone know how to treat a complex condition."

I was told the same thing. I used to have to go to the ER of my nearest small hospital for POTS every 6-8 weeks and often was refused what helps me most: IV fluids. One of the nurses in that ER once advised me to drive an hour longer and go to the University hospital ER - she said their docs at the small ER have no clue about POTS, and no interest in learning either. Thankfully since I am getting IV fluids at home now I rarely had to go to ER since.

[p8d]

I have standing orders for PRN  IV fluids from my neurologist and when I showed up at an urgent care clinic to get them the PA flat out refused to give them to me. He knew nothing about dysautonomia and said that the risk of infection was too great. This was after 5 days of diarrhea and I weighed 88 pounds. I was hospitalized a week later. If we have the orders they should not second guess our specialists! After that experience I simply won’t call for paramedics or go to an ER unless I am in complete fear for my life. 

[yogini]

I'd guess a high % of dysautonomia patients have had at least one terrible/scarring experience with an EMT or an ER.  Overall  I have had mixed results with EMTs the 3 or 4 times I dealt with them.  A couple of times they were very helpful, noticed I had low BP and high HR.  A couple times they told me I had anxiety.  One time I was prescribed Xanax when I got to the hospital which I didn't need.   IV saline would have worked

EMTs and medical professionals need to learn to listen to patients (especially women) evaluate their physical symptoms and not give psych diagnoses that they aren't even qualified to give.  Dysautonomia is often worst in an upright position.  When lying down in an ambulance the symptoms might get better, which is important to also know.

[CallieAndToby]

I started having seizures months ago and the first ER doctor said I was "stressed over the pandemic", the second called them "pseudo seizures", the third knew POTS but didn't understand I have HPOTS and terrible syncope. At one point I went to the ER and starting seizing in the wheelchair and they held me down and told me to be "still" so that they could take my vitals. I always had to ask for saline infusions, which like I mentioned, should be an automatic. The third doctor who knew what POTS was asked the nurse to do the poor man's tilt table, but she was in a hurry and after receiving a full bag of fluid in a seated position she quickly took my blood pressure (no my HR) then she had me stand up immediately and took my blood pressure.... I was so scared this would go in my chart somehow. I was also sitting for a very long time after a horrible seizure and I told the nurse I was going to pass out and she said, "you're sitting so it's fine"; I guess she didn't realize....  Overall, the ER doctors have been extremely rude except the one who knew POTS, still can't get an MRI though which was part of why I went. 

3 hours ago, yogini said:

One time I was prescribed Xanax when I got to the hospital which I didn't need.   IV saline would have worked

IV saline is a must! A must! I always had to beg for it after these seizures b/c I honestly didn't know what was going on but they helped tremendously. 

[MomtoGiuliana]

I agree that the most important thing an ER can provide (in my experience) is IV fluids.  Of course that is assuming the patient has a diagnosis of POTS.

I think understanding that orthostatic testing (hr and bp lying/sitting and standing) that might suggest autonomic dysfunction.  When I was undiagnosed this was never investigated (at ER or by my GP at the time).  Even tho I complained that my heart was racing when I stood.

I think most drs do not understand how totally disabling severe POTS can be.  So they see a patient in distress and labs etc look normal so they assume anxiety is the problem.

 

[RecipeForDisaster]

I also think that if you’re not dehydrated or hypotensive , they can’t understand why you’d need fluids, or why they’d help. I know in all of my years of training, there was never another reason taught to give fluids... it’s like giving extra potassium to someone with enough potassium, to them. I can see both sides of the coin, but man, can I ever tell you that it doesn’t matter what my vitals say if I need fluids. I always figured I’d bring some studies with me if I ever had to go to the ER (if I was alone with no one to place my IV?).

 

The other day my BP wasn’t even that low, but my pulse pressure was. That was enough to make me decide to spend the day hooked up to my IV pole. Each day is fairly bad, so it can be hard for me to decide when to do it. Even though I have a cache of fluids and supplies.... I don’t have access and can’t get it, and have only so many veins which I don’t want to scar.