ER experience

[Sea otter]

As I lately have awful flares I decided to go to ER. This was first time after I got diagnosed that I went to ER. But unfortunately it felt almost the same before I got diagnosed. Then they didn't know what's wrong and now they didn't heard about my diagnosis. They did bloodwork which was fine and they were monitoring my HR for few hours. I tried to explain that it is problem when I stand up. I didn't even get saline infusions (infusions make me feel little better). One of the reasons that I went is some of my doctors suggested few times when it is really bad to go to ER. Now I have prove how it went. It seems like it doesn't matter how bad it is, you just have to suffer and hope it will get better. Is it worth going? What is your experience with ER? 

[Sarah Tee]

I could only suggest getting a letter from your specialist about your situation with their contact info on it, including an out-of-hours (locum service) number, and instructions on what to do. Or, alternatively, getting your doctor or specialist to call and fax the hospital with instructions before you go. That way they can at least recommend that you get a saline infusion.

After a disastrous trip to Emergency with an adverse drug reaction, I now have a letter and an emergency contact number from my specialist, which I had to pry out of him.

It’s all very well for doctors to say “Go to the hospital” but then they have to give you the appropriate support to do that. I actually remember doctors doing this for me ten and twenty years ago, but recently they don’t seem to bother. I have to be constantly asking and prompting them to do things, even older doctors who you would think would know better.

Of course, with many of these things, you don’t realise until afterwards what was needed, and yet the doctors must have known and could easily have addressed it beforehand.

I’m sorry you didn’t get any help. Is there anywhere you can get IV saline yourself, such as a medi-spa? (I know it’s expensive amd not available everywhere and the non-hospital environment can be a concern.)

[Jyoti]

That totally stinks @Sea otter.  It is an awful awful feeling (when you are already feeling awful) to go to the ER, to need help, and to be treated like that.  I am thinking back not so fondly on an ER trip where I was in a terrific flare and being greeted with the discreetly rolling eyes.  A nurse taking off the leads for the EKG and saying smugly--now there is a pretty little EKG.  

Malingering again!

In any case, I concur with @Sarah Tee.  If you can get a letter from the doctor who advised you seek emergency treatment under these circumstances outlining what to check and how to treat, that would help.  I just got a letter from my cardiologist suggesting saline when I go to the ER, so I don't have to ask or fight.  I hope you can get such a letter. What they can do is not all that great, but you should be able to get it all the same!

[Sea otter]

@Sarah Tee and @Jyoti I have letter from my neurologist that saline helps but ER doctor didn't want to cooperate. Doctor was exhausted, working all alone in ER, there were a lot of patients and she didn't have time to devote little more so I can explain her some things. Usually when I am in bad flare I ask saline from my doctor but it was weekend so I decided to try ER. 

[Sarah Tee]

@Sea otter, oh no! You were well prepared but still couldn’t get any help. I’m gald you can get saline from your doctor sometimes at least.

How are you doing now?

[Pistol]

@Sea otter If it is any consolation - you are not alone. Before I got a port and now am stabilized on twice weekly infusions at home I had many, many ER trips due to high BP and HR, passing out and having seizures ( proven to be from cerebral hypoxia from not enough blood flow to the brain ). A few times my PCP even sent me to the ER from HIS OFFICE! The ER docs all knew me and belittled all my symptoms. I got the eye rolls many times. Once the doc told me they are too busy to babysit me. Another time my PCP admitted me to the hospital from his office to receive IV fluids overnight and the hospitalist refused IV fluids because - wait for it - I was able to drink. After that my PCP ordered the port and the ER trips are history. 

Unfortunately most ER docs dont feel responsible for treating a chronic condition, especially not one that they cannot see, like in symptoms or numbers or abnormal labs. I do agree with what others have mentioned - a letter from your PCP might help. 

[Sarah Tee]

One day Emergency will have transcranial Doppler and carbon monoxide rebreathing, and many of us will be able to prove on the spot that we have low blood flow to the brain or hypovolemia. Though why we should have to, I don’t know!

My rotten experience didn’t even really have any connection to dysautonomia – I was having an adverse drug reaction, which could happen to anyone with any medication. I suspect they treated me badly because they felt upset and insecure that they hadn’t heard of OCHOS or perhaps it was the usual disdain for disabled people and chronic illness.

I wonder what would have happened if I had fudged the reason I was taking the medication as hypertension (not completely untrue) and said I was full-time employed as a marketing manager, had three kids and my lawyer hubbie was just parking the Beamer and would be in shortly … !

[Sea otter]

@Sarah Tee I am little better now, thanks. 

@Pistol I feel you, I have experienced similar things that you mentioned, my PCP also sent me to the ER from her office and didn't want to give me saline at first because I was able to drink. Definitely I will have to be more prepared for the next time. I know I am not alone but battling with this illness and so many other things related to that is just so frustrating and exhausting. 

[Sarah Tee]

@Sea otter, it’s so hard because we can’t come up with the perfect rebuttal for every wrong statement on the spot.

For example, “You don’t need IV saline because you can drink”.

“In my case, it’s not about drinking. Like many people with OI-type dysautonomia, I have a faulty RAAS that sets my blood volume artifically low. This can usually be ameliorated by oral rehydration salts and fludrocortisone, but when I’m in a flare the only thing that works to bypass the RAAS and normalise my heart rate is IV saline.”

I find that when the person I’m dealing with is combative, unpleasant or a poor communicator my brain shuts down.

So if the person said “I’m not clear on why your doctor ordered IV saline when you can drink. Can you clarify that for me?” I might be able to answer to “exam quality”.

Or even just contacting the specialist. It’s like “If I don’t understand it, it must be wrong”, which is alarming. It should be “I don’t understand it so I’d better find out”.

I have two appointments this week for a gynae/skin/autoimmune problem and am dreading them. The first specialist I saw was horrendous. So I’m trying two other options. Hope at least one goes okay. Have to drive to Capital City two days in a row. Ugh.

[MikeO]

now i kinda feel bad. most of my er visits (all injuries from passing out) they stuck a IV bag in me. only one that they did not was when my right eye hemorrhaged. wonder if just a statement that one has been really orthostatic lately or been sick and feel that they are dehydrated would work. in my visits i never alluded to dysautonomia (this term could have a negative direction) but i will state that i am orthostatic and have frequent episodes of presyncope and syncope. that folks understand.      

[Sea otter]

@MikeO you don't have to feel bad at all. 

[MomtoGiuliana]

I'm so sorry.  What has kept me from going to the ER with horrible flare ups is my PCP now understands I need IV saline when in a flare up.  She is aggressive with ordering it and getting me an appointment at infusion center asap.  This has helped so much to tamp down severe symptoms, but it's been years in the making,.  It's frustrating that more doctors at this point are still not aware of our condition and things that can help.

[Sea otter]

@MomtoGiuliana yes, it seems the best solution when in flare. 

[Sushi]

2 hours ago, MomtoGiuliana said:

I'm so sorry.  What has kept me from going to the ER with horrible flare ups is my PCP now understands I need IV saline when in a flare up.  She is aggressive with ordering it and getting me an appointment at infusion center asap.  This has helped so much to tamp down severe symptoms, but it's been years in the making,.  It's frustrating that more doctors at this point are still not aware of our condition and things that can help.

My Dysautonomia specialist also bypassed the ER and set up an arrangement with a hospital infusion clinic to give the specified amount of IV Saline to any patient he referred, and this worked. He had privileges at that hospital. Basically a phone call got you in virtually immediately.

[MaineDoug]

After years of mistreatment, disrespect and useless ED visits I refuse to go anymore! I know what will happen and it won’t help and will make me feel worse. 
The only exception I have is for arterial bleeding. 
It’s so sad that a place supposed to help us at our most vulnerable time can instead feel worse than the condition driving us in. 
AND I WAS A DIRECTOR FOR MULTIPLE CLINICAL DEPARTMENTS AT A LARGE HEALTH SYSTEM prior to disability. In fact, I LED THE ENORMOUSLY SUCCESSFUL CAPITAL CAMPAIGN TO BUILD A STATE OF THE ART FACILITY at our local hospital. My care there has been shameful. It makes me cry. 
 

Good grief.

Sincerely,

Doug

[Sea otter]

@MaineDoug I am so sorry to hear that and for the all you went through. I understand your frustration. It's really sad and shameful. Thanks for reply. 

[MaineDoug]

Thanks Sea Otter,

 

dealing with similar issues again today. My Endocrinologist (GREAT doc, can get him in 10 minutes on New Year’s Eve if needed), is working with me to deal with a prednisone withdrawal crisis (he’s trying to wean me). 
Went down from 8 to 7 mg and had major POTS flare with scary vitals. Now stable at 10. So he sends me the message below this morning:

 

PLEASE make sure you are reaching out to Dr ***** as well. Any fevers or other infectious symptoms? Of course you really need to consider going to ED if that unwell. Otherwise should stay on pred 10 until more stable I guess but again its critical to get insight from Dr ***** and others as well.

🤪

So, he needs me to contact Dr. *****, who has not responded to 6 portal messages (2 marked URGENT), 5 voicemails and 2 calls to her desk, but hasn’t called me since May? 🤔 I’m sure that will go great. 
 

As for “others as well”? Is he referring to the team of specialists in every field with training, knowledge and experience in treating Dysautonomia/POTS that I have on standby? 😂🤣😂🤣😂🤣😂🤣😂🤣😂🤣😂🤣😂🤣😂😅😳🤬

 

And as far as “consider going to the ED”? 🧐 Does he think the stress of getting out of the house, lying in the car while my wife drives me in to be stripped of my clothes and dignity so I can lie on a hard cold table for 8 hours to be belittled, disrespected, and treated poorly will help? 😳🤬😂

 

I’d rather be tarred and feathered! And the heat from the tar would make my joints feel better! 🤗

 

Hmmmm, nah, I’ll pass! I’m staying home, safe and happy! 

[Sea otter]

@MaineDoug This is tragicomic. 🤭

According to doctors we should go to ED very often, with all symptoms we are experiencing. 

May I ask you are you on prednisone because of POTS? I know some doctors are treating POTS with it. 

[MaineDoug]

@Sea otter,

I was prescribed prednisone 14 years ago to treat Rheumatoid Arthritis. 
 

I can’t tell if it has any impact on my Dysautonomia. 
 

Doug

[MaineDoug]

I would recommend caution with Prednisone. I’ve seen recent research questioning if there is a safe dose or duration. I asked multiple doctors many times if I could wean, but they didn’t engage. And now I’m physically addicted and it’s causing much harm. 
Sometimes Prednisone is necessary, but it’s always a risk!

[MikeO]

20 minutes ago, MaineDoug said:

I would recommend caution with Prednisone.

I have had a go with this as well. at one point i was ok with prednisone but my last round did not go well. so i weaned or some other word i am looking off of it pretty quickly. it is on my banned drug list.

[MaineDoug]

After years of mistreatment, disrespect and useless ED visits I refuse to go anymore! I know what will happen and it won’t help and will make me feel worse. 
The only exception I have is for arterial bleeding. 
It’s so sad that a place supposed to help us at our most vulnerable time can instead feel worse than the condition driving us in. 
AND I WAS A DIRECTOR FOR MULTIPLE CLINICAL DEPARTMENTS AT A LARGE HEALTH SYSTEM prior to disability. In fact, I LED THE ENORMOUSLY SUCCESSFUL CAPITAL CAMPAIGN TO BUILD A STATE OF THE ART FACILITY at our local hospital. My care there has been shameful. It makes me cry. 
 

Good grief.

Sincerely,

Doug

[Pistol]

I seriously believe that they tell us to go to ER simply so they cannot be sued. As long as they pushed us off to someone else they are covered. 

[BaPon]

Not arguing with your perspective but wanted to share mine. 
 

I didn’t want to go to ER last week. But if I hadn’t I might not be here. I ended up is critical low phosphorus. We don’t know why yet (perhaps Vit D levels, perhaps low C02) but be careful of avoiding ER and assuming everything is okay. This article is helping with the differential diagnosis for my type of PoTS and the low C02 and Low phosphorus. 

J Am Heart Assoc. 2018 Jul 3; 7(13): e008854. 

Published online 2018 Jun 30. doi: 10.1161/JAHA.118.008854

Again, not trying to start any argument. Just be careful. My husband finally insisted I go in to ER. It took 3 days to get me stabilized. 

[little_blue_jay]

10 hours ago, BaPon said:

Not arguing with your perspective but wanted to share mine. 
 

I didn’t want to go to ER last week. But if I hadn’t I might not be here. I ended up is critical low phosphorus. We don’t know why yet (perhaps Vit D levels, perhaps low C02) but be careful of avoiding ER and assuming everything is okay. This article is helping with the differential diagnosis for my type of PoTS and the low C02 and Low phosphorus. 

What were your symptoms of low phosphorus?  Are they still trying to find the root cause?