Yesterday I ended up in the ER again. For many weeks I've been struggling to eat and drink because my BP keeps plummeting causing severe nausea and I vomit almost everything up. Yesterday was no exception. It's been very hot out and in order to get a break from my symptoms, I run........a lot. Several times per day I run 2-3 miles. A combination of vomiting and running is not good when you have dysautonomia, unstable BP, and cannot drink your recommended 3-4 liters of gatorade per day for several weeks on end or eat enough to make up for the calories you're burning.
So in the morning I had taken my meds as usual with some sips of water and started vomiting yet again. The only recent change that's completely new for me was a switch in the brand of midodrine I received from Mylan to Global. I don't know how much of my medication was actually ingested because of the vomiting. A few minutes later I started to get pounding in my head and while lying down my BP was running high. That's extremely unusual for me; even when I'm on all my meds in max doses.....including midodrine which you aren't supposed to lie down on. I was getting readings of 128/108 but when I'd stand up it would become undetectably low within seconds. My vision and hearing would fade out, occasionally I'd completely black out if I'd force myself to continue standing, and when my BP reading came back, it was in the 60's/40's. A huge sudden drop.
It's common for me to have an issue like this at home and then get to the ER and the situation cannot be replicated. That results in doctors either doing nothing whatsoever or focusing on something unrelated like T-wave inversions on my ECG. I had already been waiting out severe symptoms for many days because I wanted to be absolutely sure that I was going to get some help when I went in. By the time I decided to go, I had called a relative and realized I was slurring my speech again. That has happened many times over the past several weeks as well.
I knew there was an urgent care center which stated on their website that they used IV fluids for rehydration purposes. I called them, explained my situation, and they said they could likely treat me there. It took me several hours to get there. At the door after filling out their form, they refused to see me or even let me see a doctor/NP because of my pacemaker and the "complexity of the situation." So basically even though my pacemaker was not involved, they were discriminating against me solely because of it. I was pretty much enraged at this point! I cannot get help from the ER. That's why I struggled all morning to drag myself up to urgent care. I was still slurring words. What the hell was I going to do now?
Reluctantly I dragged myself into the ER where I've had very bad experiences several times. If I had gotten the same doctor that I had last time, I don't know what I would have done. Since I've had problems in the past getting IV fluids when I clearly and desperately need them, this time I brought my cardiologist's notes. Printed out it was 11 pages!! I also had photos of my blood pressure monitor at home. I had articles saved on my phone as well stating that the treatment for acute hypovolemia is IV fluids and that a low pulse pressure (which I was getting at home) is an indication of that.
The ER took me back very quickly and hooked me up to an ECG. They did not ask me about my medications again and the list they had on file was very outdated. Within a few minutes of lying down, my pacemaker went off and shot my rate up to 160. It remained like that for over an hour. At first an entire team came rushing in and I thought they were going to shock me or something. I had to quickly explain (with my still slurred speech) that my pacemaker is supposed to do this, that my BP is completely uncontrollable at home and that when this happens and I cannot gain control at home my cardiologist told me to "try to get IV fluids to feel better" even though most of the time doctors won't listen to me whatsoever at the ER. I told them that I'm a runner, I'm supposed to be drinking 3-4 liters of fluid per day to keep my BP up, and because of vomiting I've barely had any fluids in days. I was upfront about my frustration with past ER situations. I explained that I have autonomic dysfunction and I cannot control my BP on my own and handed them the notes from the large hospital that I go to for ongoing management. I was very upset by my inability to pronounce words correctly but I knew if I started crying they'd probably try to force xanax in my line and say everything is an anxiety attack. So I remained very calm.
The doctor I had was very young and he didn't question me whatsoever. He had them starting lines for two simultaneous bags of fluids as soon as I got there and ran only basic blood work without any unnecessary testing. I was on continuing blood pressure monitoring and it was all over the map from undetectably low to 130's/90's. It was more common for me to be in the high range. When my pacemaker went down to the 120's, which oddly matched up exactly with the time the two bags of saline finished, they checked on me, let me go to the bathroom and said they'd call my doctor to make sure it was okay to release me. I was now able to speak clearly without slurring words. They couldn't reach my doctor, but they spoke to someone else there and apparently he cleared me to leave.
This will be the second time in one week that my cardiologist was contacted by another doctor on my behalf. On Friday I was already crying at an appointment with an ND due to severe unrelenting symptoms the previous day and all that morning and she called and spoke to him. I knew then that I couldn't last much longer in that state without some type of help to get things under control. If I'm in tears at a doctor's appointment, I'm not being dramatic or exaggerating. I don't need a therapist. I am seriously struggling and physically ill.
This was the first time ever that I was able to get help at the ER. Appropriate help. The doctor was young enough that he hasn't had a chance to develop a condescending arrogant attitude yet. The pacemaker helped me out a lot. If I didn't have it and it wasn't going off to 160, I would have gotten no help whatsoever again. They would have assumed I'm just drug seeking for saltwater or whatever the hell they think I'm doing requesting plain saline and NO medications whatsoever.