Ending Up On Disability… Part One

This is a hard one.  I’d been fighting ending up on disability for eight years.  I’d had neurological problems for decades.  Finally, it all ended up being too much, and that hurt a lot.  I’d been a working RN for 19 years, and that was who I was and what I knew.  I lived nursing.  I loved working.  I still keep my license simply because I never want to say I was a nurse…I still AM a nurse.

I’d had temporal lobe epilepsy since I was in junior high school, though it wasn’t diagnosed until I got my first nursing job and had my own health insurance.  I’d fallen a couple of times on my head, and had significant concussions.  At the times of the falls, I’d been checked out by a doctor or nurse, and they thought I’d been bonked rather hard, but in those days, concussions weren’t really given much attention.  Since I didn’t have any vomiting or vision changes, nobody really cared- though some people I knew who saw the aftermath knew I’d fallen hard.  As a result,  I spent a fair amount of junior and senior high school with headaches that were blown off (though I did see a neurologist my freshman year of high school).  There were no glaringly positive test results, so I was told to keep quiet about them- I was fine.  I wasn’t fine.

Once I was officially diagnosed with seizures in 1986, I was started on medications, and did pretty well.  My work attendance wasn’t affected by them, and when I did have seizures, I got past the post-ictal period fairly easily (the period of time after a seizure when folks are likely to have headaches, and feel kinda ratty).  I was 22 years old when I was diagnosed, and still had the power of youth behind me.  That helped.

As time went on, I had more concussions.  I don’t know how that eventually affected the diagnosis of dysautonomia, and probably will never know.  I also had some significant relapses into starving and purging- and I’m not sure how that damage to other parts of my body may indicate a possible cause of the autonomic dysfunction.  At any rate, in 1996, I started passing out.  I’d moved into a house with a co-worker to share expenses. It was a win-win for both of us, and since we worked opposite shifts, we had chunks of time in the house with the other at work.  It was almost like a part-time housemate, with the benefit of full-time cost saving. We might have  a shift here or there when we were in the house at the same time.  This house did not have central air conditioning.  In summer.  In Texas.  I didn’t know it at the time, but this was the perfect storm for autonomic dysfunction to kick in.  Heat dilates blood vessels.  In a normal person, their heart rate speeds up to keep blood moving to their brain.  In someone with dysautonomia, their heart rate doesn’t speed up, so the blood doesn’t move, and their brain shorts out.  Blood pressure also plummets. Once they hit the ground and are ‘level’ with their heart, it isn’t as much work to get blood to the brain, and they wake up.  This is exactly what was happening to me.

The first few times, I tried to minimize it, and chalked it up to stress from the recent eating disorder treatment, moving in with someone I didn’t really know, and feeling ‘monitored’ at work since returning from eating disorder treatment.  My housemate was sometimes in the house when this happened, sometimes not.  When she saw these episodes, she was sure they weren’t ‘stress’ or any type of psychosomatic episode (she’d been a nurse for several years longer than I had), and encouraged me to get it checked out. I resisted.  One night, I’d gotten up to go to the bathroom around 3:00 a.m., and hit the floor (hardwood floors).  The thud woke my housemate up (on the other end of the house where she was asleep in her room- both of us had the window air conditioners on).  I woke up looking at her feet; she’d sat down on the floor of my room, and was making sure I was waking up.  I tried to get up, and couldn’t move without things spinning.  She asked if she could finally call 911, and I told her I didn’t care.  I was too weak to move.  I’d passed out 10-12 times in a couple of weeks. That started the diagnostic process.

I had the usual 24-hour Holter (heart) monitor,  30 minute EEG (brain wave test), blood work, and appointment with a neurologist in the small town where I lived.  In telling the neurologist what was going on, she suspected something besides the history of seizures I’d had, and referred me to an electrophysiologist (cardiologist who specializes in heart rhythms) in San Antonio.  I went to see him (drove myself 60 miles there and back) and he scheduled a tilt-table test to find out what happened with my autonomic system when I was upright, and blood shifted to my legs.

I went to that tilt-table test, and totally bombed.  It took longer than most folks, but I’d started with a rather low blood pressure (80s/50s); I was used to a low blood pressure.  I began to feel things changing, and told the nurse who was monitoring me (next to a crash cart- always reassuring….NOT).  I started to fade, and they lowered the table back to horizontal.  My blood pressure had dropped to 44/16, and my heart rate dropped into the 50s (and I was still aware of what was going on; who knows what it dropped to when I actually lost consciousness).  That was it. I was diagnosed with neurocardiogenic syncope (which isn’t that uncommon at all) and the dysautonomia was verified.  I also had lumbar punctures, a 24-hour urine test (to check for pheochromocytoma), assessments for multiple sclerosis, myesthenia gravis, cardiac function tests (my heart rate was 46 during my echocardiogram), and other basic blood work. I saw a regular cardiologist, who sent me to another neurologist associated with the teaching hospital.  Dysautonomia was the final diagnosis.  I was started on the first of many medications.

It took several tries of different types of meds before my neurologist decided to try Neurontin an anticonvulsant, that has other uses.  I was nervous, as atenolol, Norpace CR, and Depakote had done nothing, and actually had side effects that were either incompatible with work, or just not doing any good. But, the Neurontin helped.  I actually started having decent days. Chronic pain was a trigger for the episodes (as is heat), so she also added a muscle relaxant.  Adding propranolol and clonazepam spread the episodes out to a few per month from a few per week.  I was encouraged.

During this time, I was working at a drug and alcohol rehab place, and was generally the only RN on campus at the time.  There had to be an RN on duty legally, and being semi-consious didn’t really count.  That was a problem.  My director of nurses (boss) recommended I go on disability, but I wanted to work !  I had more evaluations and some additional medication adjustments, and adjusting the dose of Neurontin seemed to help.  There were additional stressors at that job, and I ended up changing jobs to a nursing home, where I started working on the regular floor. Soon, the pain was unbearable, and I found a home health job.  Before I left the nursing home, the DON there asked me if I’d stay and do the Medicare assessments that would be starting in a couple of months; in the meantime, I’d do various less painful tasks.  I agreed.  I liked the facility and residents; I was just trying to avoid as many triggers as possible.

The episodes continued to happen, and that DON suggested disability.  I still wanted to work!   That particular DON ended up moving away, and the new DON and the same administrator worked with me, and allowed me to take the time I needed when the episodes hit, and then pick up where I left off with my work. Having a ‘desk job’ allowed for more flexibility, and nobody had to worry about the residents not getting care if I pooped out. My other coworkers could tell by how I was in the morning if I was going to end up tanking later on in the day  (I don’t remember what it was exactly, but they could tell).  I’m SO thankful for that DON and administrator for looking at what I could contribute, and not just at my health issues.   The episodes seemed to lessen, if I remember right.

I had decided I was going to move back to my hometown to help my dad take care of my demented mom, so thought that some more recent hospital experience would be helpful.  I resigned from that great nursing home, and went to work at a community hospital that I’d worked at before.   I had to avoid heat, and keep my fibromyalgia pain under control the best I could to avoid the autonomic dysfunction from kicking in.  I spent a year there before moving back to my hometown, and had been encouraged.   I thought that I was going to be OK to work in a hospital setting when I returned to the Midwest, and I sent out resumés, and set up interviews before I moved.  I had no idea what was in store for me.

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