Tuesday, May 26, 2015

ER Experience

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.

Friday, May 8, 2015

Hot Weather Doesn't Mix with Dysautonomia

This week has been so tough for me. Pretty much every single night I'm waking up with night sweats, nausea, vomiting and undetectably low blood pressure. Every time I eat, the same thing happens. So I haven't eaten or slept for 90% of this week. I've still been forcing my running. I started that nearly 4 weeks ago (3-6 miles per day) to try to get myself into maximum conditioning to help out my blood pressure for this summer. I've also been taking all my medications (mestinon, midodrine and bystolic) on schedule along with 3-4 liters of fluids, compression, and up to 10g of salt. I've tried caffeine, guarana, licorice, ginseng, monster drinks, etc. Nothing is helping. I'm miserable. I have no quality of life whatsoever.

Today I hit an all-time low. I was nauseous this morning so took my meds on an empty stomach and went out running to raise my blood pressure like I always do. Shortly after running, as I was trying to discuss Lyme (of all things) with someone who was just bitten today and needed to figure out how they were going to convince a non-Lyme literate MD to give them a month of doxy, I realized I was slurring my words. I couldn't pronounce things correctly. What the hell? I hate my life. I felt like an idiot. I went in a bathroom and cried. Eventually I regained my composure and pulled it together enough to eat something. About an hour after I noticed the slurred speech, it stopped.

The rest of the day I continued to feel like crap. Like always. Very tired, overheated (it was 92 degrees today) and frustrated with my whole life. I got home, ate a small piece of gluten free pizza (lying down because I can't handle carbs). Sure enough I started to feel my blood pressure drop from just a semi-normal portion of food. The above was my reading.

Earlier this week I knew I was heading downhill so I had already called my autonomic specialist's office. I hadn't slept in days, was barely eating and needed to figure out what to do with my blood pressure at night. I was asking about taking a dose of midodrine at night because I need to get some sleep. I had already tried all my other options before bed. My doctor wasn't in, so the nurse asked a doctor who wasn't familiar with my case. Her advice (which she gave to a nurse to relay to me on my voicemail) was that "my symptoms are not due to my blood pressure, call your PCP and don't take midodrine at night." Clearly this doctor put in no effort whatsoever. She never spoke to me and she didn't appear to even glance at my chart or come up with any type of advice that made any sense.

Needless to say I was pretty furious. This happens every single time that I need medical help desperately. My specialist has told me that he doesn't understand why doctors don't take me seriously when I need help at the ER or urgent care; yet his own office does the same thing to me! When I finally did get in contact with my doctor he was somewhat helpful although in the overall picture, my symptoms suck. My quality of life is non-existent and there is no plan about what to do to improve anything. The consult with Mayo? Completely worthless. Apparently whatever treatment or diagnostic ideas they had are not considered necessary by the neurologist who met with me for 5 minutes and wants nothing to do with my case. So I'm at a complete standstill. Well......not really. A complete decline is more like it. Doctors are probably just counting down the days until my BP drops permanently so that I'm no longer alive to keep harassing them for help.

I'm so aggravated. It would be one thing to live with these symptoms if they were well controlled. Let's see any one of my doctors try to function with blood pressure dropping like mine does. Most people wouldn't last one day with these types of symptoms without heading to the ER......let alone 4 years. I have absolutely no control of my symptoms and nobody cares. Why should they? They aren't the ones that have to live with it. They speak to me for 5 minutes and then put it out of their mind and go on with the rest of their day. Meanwhile I can't even stand up half the time and am left to ponder how I'm possibly going to spend the rest of my life like this with no hope, no cure, no effective treatment, no way to live a productive or normal life, no way to pay my debt, work in my field, or even complete normal daily tasks. Am I depressed? Yeah. And no I don't need a pill to cover it up. I need a real treatment for real physical symptoms.