ER Troubles - Help/Advice Needed

[Jwarrior77]

Hello. So last night I was trying to go to sleep for probably around 2 hours in bed. I honestly wasn't anxious or worrying about much. Out of nowhere I started to feel extremely nauseous. My body then started to heat up and burn. I ran over to the bathroom and started gagging not knowing what to do. While standing up my heart rate started absolutely freaking out. I then started to tremble all over. Knowing this was a bad sign I ran over to my bed and laid down. I proceeded to have full body tremors/shaking all over. It was the absolute worse it's ever been. They were basically full on involuntary convulsions. At this point I ran over and woke up my parents telling them I think I need to go to the ER. I took my blood pressure and it was 201/95. A couple other ones were 167/87 with HR 125. I felt so horrific I thought my heart was going to give out or one of my vessels was going to explode.

We went to the ER. They gave me IV fluids and ran blood work. Thank God for the IV fluids because within an hour and a half my veins started to dilate and relax and the involuntarily shaking started to decrease. My heart rate and blood pressure also started to decrease. I still felt really bad but was glad the worst of it seemed over. The ER staff tried to be accommodating and nice but still came off as annoyed and agitated as I was wasting their time. They also drug tested me thinking I was tripping on something. I explained to them that I have POTS and how the last place I wanted to be is in the ER. I truly would never have come if I didn't think my life was on the line. I don't know if it's the stereotype that because someone looks young and healthy there can't seriously be something wrong with them. I'm a 19 year old male so I understand on the outside I should be in the prime of my life with nothing to worry about. However this is totally the opposite. I've never been so debilitatingly sick before in my life until now. 

After the IV was done I went to go to the bathroom. Of course after standing up my heart rate got triggered again and wouldn't come down after laying down. Since there was no more IV fluid my veins started to constrict and I started to involuntarily shake again. This literally happened before my dad so he saw proof what was actually happening was real. The nurses/doctor didn't want to give me anymore IV because there was nothing wrong with me in their mind. The one nurse said that she understands what I'm going through is real which I truly appreciated but also kept reiterating how I need to stop obsessing over my symptoms and put mind over matter. She came off as really cold and uncaring. I just wish people could understand how bad this truly is.

So there I was being discharged from the ER with my symptoms getting worse and worse again. It was only by the Grace of God that my heart and shaking went down enough to the point where I could black out and fall asleep in my bed. 

My parents also had to get a new insurance for me as I just turned 19. It has a really high deductible and probably won't pay anything. I have put my parents through so much and they have literally spent thousands on me due to this condition. My dad is completely overwhelmed on the financial bit and we can't afford to go to another ER. I made a GoFundMe and but he told me that he will figure out the financial end. I've put them through so much and I just don't know what to do. 

I still feel extremely wired and like my body could just turn on me on a dime and have the process repeat all over again. Can anyone tell me what to do? If this ever happens again should I just bear through it even though I absolutely feel like I'm dying and I'm not exaggerating when I say that. I can't afford to go to another ER visit. If any of you are religious your prayers would be deeply appreciated. 

I'm really sorry for this rant and how long it is I just don't know where to turn to anymore. I hope you guys understand. Thanks. 

 

[jeff_jefferson2]

Have you seen any doctors? Do you have a formal diagnosis of POTS? Taking medication?

[Delta]

Hi, @Jwarrior77,

I am so sorry to hear what you have been going through and I admire your strength!!

I second what @jeff_jefferson2 asked - are you seeing any kind of doctor for this; do you have a diagnosis and are you taking any meds? Whether or not you are, what you need is an advocate.  As strong and self-sufficient a person as you seem to be, you need someone in your corner. You need someone to accompany you to any doctor or hospital visits (I realize this may be difficult, since ER visits are generally not planned in advance . . . !) and who understands your condition and can help you communicate with the providers. This could be a friend or family member (parent, sibling? Your Dad, maybe, seeing as it seems from your post that the light bulb went on for him?) or anyone you trust. It could even be your doctor, or a PA, whomever you see who understands your condition. If you have been diagnosed with POTS/dysautonomia, get a letter from whoever diagnosed you explaining your condition and literally carry it around or have it on your phone.  Show it to whoever cares for you if you wind up in the ER again.

If you have been diagnosed with POTS/dysautonomia (POTS is a form of dysautonomia), can you talk with your doctor about regular IV saline therapy? You mentioned how much better you felt in the ER after receiving fluids and I know there are people on here who also receive this on a regular basis.  

[Sushi]

I carry a packet called File of Life. It is available in many states and is intended for emergency responders, ERs etc. I printed out basic and "official" information on my condition. You could find that on this website. The packet is a red pouch and I have my doctor's card, my medications, my allergies and my print out. It has always been accepted by doctors because the information comes from other doctors. It also gives the emergency treatment recommendations and contra-recommendations. This lets ER docs or paramedics know that you are not "making up your symptoms." If File of Life is not available in your area you can order it online or make your own. I have found that ER docs accept that I have a diagnosis of Dysautonomia. Having something like this with you removes the burden of trying to explain when your symptoms may be making that hard.

[MomtoGiuliana]

Do you think the fluids helped at all?  It sounds like your symptoms did not improve.  They may have not given you enough fluids slowly enough for it to be helpful.  Most POTS patients do improve with IV fluids.  When I am in a flare I get 2 bags over 4 hours.  The slower rate is more valuable to helping improve symptoms.  When I was really sick I was hospitalized and got fluids continuously for 24 hours.

Can you talk to your doctor as a follow up about options for controlling your symptoms better?  Maybe they can order fluids for you that you could get at an infusion center or such setting and on a slower drip.  I would also talk to the doctor about other things that you can do or try (including meds) to reduce severity of symptoms.

[Sushi]

1 hour ago, MomtoGiuliana said:

When I am in a flare I get 2 bags over 4 hours.  The slower rate is more valuable to helping improve symptoms. 

And sometimes they give the fluids cold, as that is (I think) the protocol for heart emergencies, but certainly isn't for POTS--they should be room temperature or a bit warmer.

[RecipeForDisaster]

For me, even room temp is far too cold. It’s still about 30+ degrees colder than body temp... I find it makes me freezing, even though I I run my fluids slowly. Most people don’t realize that and figure as long as it isn’t "cold" (stored in the car in the winter!) it’s fine. I try to leave my fluids near my pellet stove for a while before I use them, but half the time it’s a surprise. In that case, I put a portable heating pad against the bag in an insulated pouch I made from a silver bubble wrap envelope. It helps a little.

 

Cold fluids are only intentionally used for hyperthermia, or forced cooling in something like cardiac arrest to preserve brain function. I’m sure if you were really hot in summer, it might feel good, but actual cold fluid can be jarring to the body (vessel spasm/heart irritation) so I’d avoid that.