Autonomic Dysfunction and Daily Life

I get a lot of search engine topics relating to how dysautonomia affects daily life.  I’ve decided to write about how it affects me, and why I’m disabled by it.  This in no way is a comprehensive description of autonomic dysfunction- each person has various ways that it impacts them more, as well as different triggers for their symptoms. This is just my situation…

I was diagnosed in 1996 after a tilt-table test (I was strapped to a table, and it was ’tilted’ so my feet weren’t bearing my weight, then monitored to see what my blood pressure did. It dropped to 44/16…. that’s not a typo).  I’d been passing out frequently, and my housemate (also an RN) encouraged me to get checked out. I kept thinking it was ‘just stress’ after returning from eating disorder treatment and trying to get into healthy routines.  Anyway, I had a neurologist who was familiar with dysautonomia, so that was really fortunate. Many doctors I’ve seen (before and since) look at me like I’ve made something up.

The episodes I’d have (when I was still working, and putting more strain on my body) included bright red flushed cheeks, chest blotching, blue tinged lips, and very pale skin everywhere else. Eventually, I’d pass out, and become extremely pale, with very shallow breathing- to the point that one boss thought I was dead.  During the ‘early years’ (in Texas), my employers were more willing to work with me when I had a desk job.  I’d be allowed to lie down, and then resume work when I felt better. When I moved back to Illinois, I was sent out by ambulance when I’d keel over. I’m sure it was to cover their butts, but it annoyed me to no end, and the ER they sent me to was horrible and cruel.  I ended up having to go on disability since I was having so many episodes.

My main triggers are heat and pain, which cause my heart rate to go up and then suddenly drop, and my level of consciousness to go down.  Exercise, or any activity that causes heart rate changes is a no go.  Cleaning my apartment is a SLOW process, and embarrassing that I’m not able to do a better job of it.  Eating hot foods in a ‘normal’ temperature environment causes problems. If I eat very warm food at home (where I keep the temperature around 62-66 degrees year-round), I do fairly well.  But eating away from home isn’t something that is pleasant to think about.

I’m in pain no matter what, which is a problem if I can’t keep it under relatively tolerable control.  I start passing out if it gets worse.  I have fibromyalgia and chronic headaches, and recently have had problems with my left shoulder muscles ‘pulling’ to the point that I can’t really use my left arm for a day or so until it gets back together.  I have to avoid anything that increases pain.  Laundry, emptying the dishwasher, taking out the trash, and things like that have to be paced.  When I do my main monthly shopping, I’m done for the rest of the day. It’s very painful.  I get many things shipped to my home, which helps with some bulkier items.  I live alone, and while my dad would help with as much as he can, I still want to do what I am able to do. I just have to be careful.

Being in environments away from home is extremely risky, and I have to wear an ice vest to avoid being overheated. I’m also waiting for an ice bandana, and have shaved off most of my hair, since my head just gets too hot.  I can’t tolerate doctor’s office waiting rooms, friends’/family’s homes, church, or just about any place that isn’t less than 66 degrees at all times.

Over the last couple of years, it seems as though the dysautonomia is getting worse. I have to be more careful about activities, pain, and temperature.  I don’t know if that has to do with the chemo I had for leukemia, or if it’s just the nature of the disorder. At any rate, I’m having to make more adjustments.  And, I’m having to let people help me more with getting my apartment straightened out.  I hate needing help (but I’m thankful for it).

That’s just an example of what things are like for me…

Emergency Room From Hell

There is a local emergency room that actually scares me.  I’m not the only one- whenever I mention its name to someone (even my new oncologist who works for the same organization) the reaction is usually “Oh, I know what you mean. I/my brother/mom/ dad/friend/ etc went there and they almost killed me/them.”  Their posted patient satisfaction percentages have been in the %60 range. That is BAD.  Hospitals run on patient satisfaction surveys (which is a whole other nightmare for healthcare professionals).  Reputations are hard to fix.  What is so bizarre is that the rest of the hospital is fine, or at least survivable. I’ve had many outpatient tests, a couple of admissions from the ER, and also a knee replacement at the same place, and the staff was tolerable.  I did have some complications after the knee replacement that were figured out a bit late, but nothing as bad as their ER.

One time when I was admitted, I had a nurse tell me that I needed to go home.  At the time, I was on a heart monitor because my heart rate had dropped into the 30s and was being erratic. But she looked familiar- I think she was one of the hags from the ER who was working on the cardiac floor.  I never could figure out how nurses could be so nasty.  I’ve had some unlikable patients, and some that were really unpleasant to deal with- but I’d never be inhumane or callously disregard their dignity.

I’ve got multiple chronic illnesses, and I’ve been an RN since 1985.  I’m on disability, but I keep my license current, and I know the appropriate manner in which to speak to and deal with patients. I’ve been a staff nurse, supervisor, charge nurse, and department head.  I’ve also been sent to various ERs over the years, though this scary one has been the worst, hands down.  Not even a close second comes to mind.   I was often sent there from work, unconscious, either from being post-ictal (what happens after seizures when people sleep very deeply) or my blood pressure bottomed out from my autonomic nervous system not working right (dysautonomia), and I’d pass out.

Other times, someone called 911 when they were either with me, or on the phone with me, and they could tell something wasn’t right (turned out I had some medication interactions that weren’t figured out for quite a while that contributed to some of the blood pressure problems).  I was labelled a ‘frequent flyer’, which is an extremely derogatory term given to patients who generally don’t have primary doctors and are often non-compliant. Neither of those applied to me. I saw my regular doctor monthly, and all blood levels of anticonvulsants were always therapeutic. I’m on disability because my seizures are not controlled. I’ve had testing done to see if part of my brain could be removed to stop the seizures, and that turned out not to be possible without causing more damage than it could help.  I’m not some joke patient who shows up for the heck of it (I’ve been accused of being bored, and using the ER for entertainment at the bad one).

But, the nurses and doctors at this ER didn’t care about me as a human at all. They never asked about regular doctor visits.  I was told I was a ‘wasted bed’ because I’d been brought in with seizures.  I was told that it was highly unlikely that I was compliant with anything.  They didn’t understand- or even try to find out- what I was really like as a patient- when I said anything that contradicted their assumptions, it was ignored. They made their assumptions and treated me as the parasite they thought I was.  The dysautonomia isn’t all that common as a given diagnosis.  It causes extremes in blood pressure and heart rates (and for me, heat and pain are major triggers).  My blood pressure would drop to a dangerous level at home  and per my primary doctor’s instructions, I would call 911 when it got below 70/50.  It was often much lower, and the lowest I know it to have gone is 44/16 during a tilt table test.  Even with objective symptoms, I was treated like a head case.

I rarely remember getting to the ER.  I had learned that when I woke up and saw the drop ceilings and bright lights and equipment, I was in the ER.  One night I woke up and a doctor was counting my pills from medication bottles EMS had brought from my apartment when a neighbor called them after I passed out in her apartment.  I asked him what he was doing, and he asked if I’d overdosed. I said definitely not- and asked what happened. It had taken 4 bags of IV fluids to get my blood pressure up to 80 systolic, and the nurses were getting me ready to go to ICU for dopamine (a resuscitative drug to maintain blood pressure). I ended up not needing it, since I managed to stay around 80 systolic, and I was making sense once I regained consciousness. But in the preparation to send me to ICU, a urinary catheter was inserted.  The balloon that keeps it inside was inflated before it got all the way into my bladder, and stretched my internal sphincter (what keeps the urine in the bladder) and upper urethra…talk about pain. I told the nurse it wasn’t all the way in, and she turned to leave the room without saying a word. I pushed it in the rest of the way myself.

Another time, I had just ‘come to’ and saw a doctor walking past the stretcher. I was still groggy, and he didn’t say anything to me, so I didn’t talk to him. I didn’t know what he wanted (or for sure that he was even a doctor for that matter- some guy in a white coat). He proceeded to begin to insert a breathing tube into my airway- something that isn’t done without someone to suction in case the patient vomits, some paralytic drugs to dull the gag reflex (to prevent vomiting) and calm the patient IF they need to be intubated, and without asking the patient if they are awake and know what is going on.  I have no idea why he wanted to intubate me (which more than likely would have landed me on a ventilator). He started putting the metal blade of the laryngoscope down my throat (has a light on it to see where to put the tube), and then the tube, which did trigger my gag reflex and I started to throw up. I turned my head to the right to let the puke fall out, and the metal blade (still down my throat) nicked my right tonsil, and it started bleeding. A nurse came in (finally) and since I was trying to breathe and reflexively trying to get the stuff out of my mouth and airway, they tied me down.  The doctor finally took the stuff out of my mouth and asked if I’d OD’d… I said “No!”.  He said “That’s all you had to say.” I couldn’t believe it… that was all HE had to ask !  I didn’t even know why I was there (still don’t), and it was HIS job to assess me before attempting to put in an endotracheal tube. It could be that because he assumed I’d OD’d that they were going to pump my stomach, and the ET tube was part of keeping my airway safe. But, nobody said anything to me. My medical record would have shown other ER visits with similar symptoms and ‘clean’ drug screens… There was one nurse who was helping me get cleaned up after the throwing up who was kind. She had a daughter with seizures and understood the post-ictal period.  I was just mortified.

I never got on the call light (when I could reach it), and would undo the monitors myself if I had to go to the bathroom, and put myself back on the monitors when I got back. I never asked for pain meds. I didn’t ask for anything.  I was never there for psychiatric reasons (patients who are not thought of well in most medical facilities, mostly from lack of knowledge and exposure to the various disorders). And yet I was treated like I was a total pain in the butt and whack job.

When someone comes out of seizures, there is generally a period of time when they are either extremely sleepy (and even coma-like) or mildly confused for a little while. Not everyone ‘comes to’ the same way. Not everyone has ‘TV seizures’.  I have complex partial seizures that turn into generalized seizures at times (when I end up ‘out cold’ the worst).  When I come to, I can hear things first, and then gradually get back up to speed- but sometimes my response time is slow.  The nurses at this ER from hell didn’t like that, so they’d double team me and put TWO  ammonia inhalants under my nose and hold them there as I gasped for air.  I was awake and knew what they were doing- but I wasn’t ‘all the way back’, so my response time was too slow for them- so they assumed I was a psych case being difficult. Or faking.  They were punitive.

When Social Security was reviewing my disability paperwork, they had over 1000 pages of medical documentation over the previous 3 years, including abnormal EEGs (brain wave tests used to help diagnose seizures/epilepsy) and blood pressure crashes.  But the nurses at that ER thought I was a nut job.  I was horrified that SO many nurses like that exist.  When I’d worked in Texas for 17 years before returning to Illinois, I worked with great nurses. Even if someone wasn’t necessarily going to be a ‘friend’ outside of work, I never saw cruelty or pure meanness.  We had a lot of wild shifts at work- and I never saw one of my coworkers in Texas act like those hostile nurses in that one ER.  I’d worked in another hospital in this town (pediatrics) and then a nursing home- and those nurses were also good to their patients.  But the nurses in that ER of the religiously-affiliated hospital were downright nasty. The docs weren’t much better.

When I was taken in for very low blood sugar one time, they got my blood sugar up with two ‘amps’ of D50 (sugar solution given IV), and then called a cab.  The nurse told me that it would be about 45 minutes until the cab got there, and I should wait in the waiting room. Basic treatment of hypoglycemia instructs people to eat a snack with protein and fat to prevent blood pressure from crashing again once the D50 ‘wears off’, unless their next meal is within the next 30 minutes.  I was sent to the waiting room with nothing (usually a half a sandwich, or peanut butter and crackers is standard hospital fare for low blood sugar after it’s brought back up).  Fortunately, I had my purse with some change for vending machines, and my own blood sugar monitor.  Within a few minutes, I could feel my blood sugar dropping even though I’d gotten a bag of peanuts from the machine.  I tried Coke, and it was still dropping. When I told the person at the triage window, she told me I’d already been treated, and if a nurse had time she’d come and talk to me.  I was safer on my own.

There had been a weird period of time when I was having episodes that were much like the autonomic disorder, and a bit like seizures, but not quite. I had been in the ER (per home health instructions) several times in one month. One night, I was having more trouble with my blood pressure, and went to the ER. The doctor actually told me I’d been there too much that month, and he wasn’t going to do anything. I asked if they could at least check my blood pressure again (it had come up somewhat from being moved from the ambulance stretcher to the ER gurney), and he refused to tell the nurse to simply push the button to do another BP reading.  He never got within 5 feet of me.  Ten days later, I had severe chest pain, and ended up going to another ER (per the instructions of my doctor’s nurse, who was affiliated with the scary place), and it was discovered that I had multiple blood clots in my right lung (all three lobes) and right pulmonary artery that were pushing into the base of my heart, causing EKG changes that showed my heart wasn’t getting enough oxygen (just from the pressure of the junk in my lung).  The clots were of various ages- acute, subacute, and chronic- so would have been present during the time when the doctor negligently blew me off. He could have killed me with that decision.

I’ve written to the hospital with the creepy ER, and got the standard ‘we aim to give the best possible care’ letters. My own doctor was told by one of the few nice doctors at the bad ER that he’d witnessed how I’d been treated. It wasn’t just me being snarky.  My doctor believed me. The ‘new’ ER saved my life.  I had asked the doc at the ‘good place’ that night the pulmonary emboli were found if I could go home and get a few things since I was being admitted for a few days, and she told me she didn’t think I’d live that long; the next night I was in ICU getting clot-busting drugs when I started having the same pain again.  I’d driven myself to the ER… not recommended.

For those in nursing school, new grads, or starting to work with different types of patients,   consider this:  You aren’t going to understand everything about everybody you encounter as a nurse. But just because YOU don’t get it doesn’t mean it’s OK to take out your lack of knowledge on the patient,  who could very well teach you something.  Cruelty during urgent/unstable medical situations  is never justified.  And it’s not something that can be ‘fixed’ later. You represent where you work, and your profession.  It’s not about you when you’re assigned to take care of someone.

But You Look OK….

Dysautonomia doesn’t ‘look sick’ when the symptoms aren’t present.  It only looks sick when the symptoms kick in, and that can happen just about any time for me.  My specific triggers are heat, pain, and fatigue.  I can’t leave home without an ice vest (about 5 pounds of ‘synthetic ice’ in four inserts that fit into a vest).  If I get overheated, even with the vest, the chances of my blood pressure and/or heart rate going bonkers is pretty good.

From the outside, it doesn’t look like anything is wrong with me.  But there isn’t any part of my life that isn’t affected.  My activity tolerance, even for basic household chores, is lousy.  I get things done, but it takes a  lot longer than it used to.  No matter where I go, I have to have a contingency plan in the event I start to feel like I’m going to lose consciousness.  I do have some warning, but if I’m away from home, the only thing I want to do is GET home.  I don’t want people around me when symptoms kick in.

Dysautonomia is a disorder of the autonomic nervous system.  It’s the stuff that is either reflex or not within my ability to  consciously  control.  Something goes haywire when I am up for too long, get overheated, or my chronic pain isn’t adequately controlled, and I simply pass out.  My body doesn’t compensate for the low blood pressure properly.  Or, I get a rapid heart rate that sometimes includes abnormal heartbeats and rhythms.

It’s frustrating when people don’t understand that I am not avoiding contact  just for the heck of it.   I would love to be able to do more.  I know my limitations.  I know when I can or can’t do something.   Every single day my ability to do things is affected.  Going anywhere is risky because of the temperature.  It may feel fine to others, but for my body it’s too warm.  Even in the winter I have to wear the ice vest.  When I do my once a month trip to the grocery store I have to wear the ice vest and remove my coat immediately when I get inside.  Usually I go in the middle of the night because there are fewer impatient people, and it’s cooler.

Making a sandwich or emptying the dishwasher is really painful.  I still have to do those things but I also have to rest afterwards.  Laundry is painful.  But it gets done.   I’m not feeling sorry for myself- it’s just the simple truth.  So I am responsible for avoiding things that make it worse, or could trigger completely losing consciousness.  That’s my ‘job’ since I can’t work.  I have to make my life as decent as possible without taking unnecessary risks.  Risks to me are simple things to most people.

I know I look fine.  But please don’t judge me for that when I say I can’t do something.  I’m thankful that I’m not any worse, though the dysautonomia seems to be progressing.  I still have a lot to be thankful for; I still live by myself, and get things done, even if slowly.  For those who haven’t seen what happens, please don’t assume I’m just being weird.

Outward appearance seldom tells the complete story about anybody.