Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With ‘Breast Cancer Awareness Month’ at the same time, nobody will care about dysautonomia.  My guess is that men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  They never seem to mention that %5 or so cases of breast cancer are IN men. That question used to drive men mad when I did patient intake admission assessments when I was working. I had to explain I wasn’t being snarky- it’s something men need to be aware of if they feel anything different ‘there’.

I’m an RN (disabled since 2004, but have kept up with my license requirements, and use my background to keep myself alive). I’ve known, and do know, many women who had  breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years starting with breast cancer, and dying from something unrelated other than the dementia caused by brain radiation that made her less than ‘worth helping’ when she got acutely ill in AZ.  Dad flew with her home, emergently.  We went straight to the hospital, and she was dead in 2 days). I understand that any cancer diagnosis is a nightmare (I’ve been there, with APL leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably much longer than it was diagnosed.  It didn’t flatten me for good until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure and heart rate tanks (with neurocardiogenic syncope) or pulse going higher as I’m vertical, if the more POTS symptoms act up. (Not everyone has just one set of dysautonomia symptoms or diagnosis).  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I can take a warm shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My home thermostat must stay around or below 65-66 degrees year round (including when it’s 20 degrees outside; I had my bedroom AC unit- different from the central AC in the house- on 64 degrees when the wind chill outside was MINUS 20 degrees F), or I start to have symptoms.  Fifty degrees is OK if I’m outside for the rare times I can be outside (the sun adds heat regardless of air temp).  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go to an appointment where I have no control over the thermostat, I have to wear a cooling vest with 5 pounds of freezer pack inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and these are NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming and a huge safety risk if symptoms continue to get worse.  I’ve keeled over and whacked my head, or as has also happened, partially torn my ACL and medial meniscus.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, shoulders, hips, spine, epilepsy, diabetes, yadda, yadda, yadda… most body systems are impacted by something), so when I’m walking I look a bit gimpy, but the dysautonomia is  invisible if I’m not lit up like a red stop light from severe flushing when the episodes kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome. My arms are also atrophying.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over, unconscious,  and then sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started with the passing out and other ‘not good for work’ stuff, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC…in Texas. In July) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone. My room was in the front of the house, so shaded by trees outside. There were room AC units in the bedrooms).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of physical medical issue.  One  night I couldn’t get up off the floor like usual (about 10 minutes after coming to), and I agreed that she could call 911.  That started the whole testing process. I’d keeled over about 10-12 times in three weeks. I finally gave in.

I was lucky that I had a neurologist in 1996 who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out- I had long stretches of interstate with little traffic where I was going, and a plan if I felt bad while in the car).

I continued to have issues at work, but eventually meds were sorted out (gabapentin, a benzodiazepine, and a beta blocker), and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at next had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious RN – but I didn’t want to stop working; being a nurse is who I AM- or was).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I was back  in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 12+ times in a month or so at another nursing home (office RN assessment job), and it was clear that I wasn’t able to keep working. I don’t remember any of the trips to the hospital, just the nastiness of being seen as a ‘frequent flyer’ by the nurses and doctors who’d never heard of dysautonomia, and made cruel assumptions.   I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a  neurologist on my insurance plan at the hospital, who seemed clueless- she just kept increasing the gabapentin until it was 3600mg/day, and that did nothing but make the seizures worse since they are sleep stage-related, and I was nearly always getting close to the early stages of sleep, that were confirmed on video-EEG over a week in a teaching hospital by another electrophysiologist.  Once on disability (and no Medicare for two years after being ‘approved’ for disability for medical reasons, and it takes 2 years to get Medicare- so that made no sense), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 4-5 shots of insulin) and total control over my thermostat, (edited for 2020) I’m able to watch TV in bed with my legs up, and get to the end of my driveway to get the mail, or take out the trash (I live alone).

Now, my ‘normal’ consists of having the air conditioner on when it’s below freezing  outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home only for doctor’s appointments and if the dog has to go to the vet or groomers.  Everything has to be ‘paced’. I have a self-imposed driving distance limit, that my neurologist is comfortable with (I know if I can’t drive, and don’t put others or myself at risk).  If I do laundry, I can’t unload the dishwasher.  If I take trash to the curb, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was professionally familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $310 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying huge copays for insulin until I get to the ‘catastrophic’ phase of part D, that adds about $350-400 a month.  SO if all goes well, nearly $1000/month goes out the door for medical expenses. I chose a supplement that pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I made  payments on what they didn’t write off for 4 1/2 years. That was in addition to the other medical expenses. Advantage plans are only good for people who don’t get sick. When I signed up for one, I never imagined leukemia would come into the picture.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind that is inconsistent, and not something I have much control over, other than the thermostat and pacing all activities.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed? I worked as an RN on a neuro floor, and we were careful, but not crazy pants paranoid… seizure patients all have different symptoms and THEY are the ones who are experts in how epilepsy shows up in THEM. It’s rarely the landed-fish flopping around that is on TV. Many, many epileptics work and have pretty normal lives, being compliant with medications and doctor appointments).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected. A horrifically nasty post on social media can trigger a flight or flight response that gets things going (so I am on social media at my own risk, and anticipate the jerks chiming in about things they know nothing about-or who can’t tolerate that someone has an opinion that differs from theirs).  But heat and pain are my main triggers.  I’ve been in constant, chronic pain since 1995- that’s harder to control than the temperature. I’ve only recently given in to ongoing pain meds with a pain doc I’ve seen on and off since around 2008. The epidural injections help some, depending on what gets ‘shot’, but they don’t last long.  I’ve tried medical cannabis and CBD- didn’t like the THC at all. The CBD is good if I have to sleep, and/or need something to tire me out enough to quit trying to do too much.  It’s been 25 years of not remembering being pain free (which isn’t a reasonable expectation at this point, but controlling pain to get to a level that is tolerable IS a reasonable expectation). I need pain meds to function enough to keep up my house (which I have to pace).  I’d rather be here, alone than in some assisted dependence situation with people I don’t want to know, and time schedules I don’t want to have shoved down my throat.  I’m independent. I may be in pain to the point of being in bed after a day of 2 loads of laundry- but I’m in MY house, with MY dog, doing MY ‘chores’.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing for varying lengths of time- or sitting up for longer than they can tolerate. Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety at some point, and some might ‘just’ need a walker with a seat for safety if they need to sit down in a hurry.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern and keeps happening. It becomes something that is no big surprise, based on triggers (different for everyone).  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes (I’ve learned to put my own in since I’d done it many, many times on patients when I was working, and use it for fluids since doctors here don’t believe in intermittent IV fluids) and other external measures to make it a little more tolerable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often. I’ve had symptoms since I was a teenager, but was blown off until it couldn’t be blown off- an unconscious body on the floor isn’t generally “nothing”. I recently read about the connection to concussions (I’ve had at least 5-6).   It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.  And isolation takes a while to adjust to. When the pandemic (2020 edit) caused “stay at home” orders, it was literally how things have been for the last 16 years for me, and countless others who know to be thankful for the days when nothing goes wrong.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Former Co-Workers When I Worked Pediatrics

I was stumbling around on Facebook, and  found three of the R.N.s I worked with when I worked pediatrics, and sent ‘just saying hi’ messages.  I’m not sure they’ll see them, but I hope they do.  When I worked there, the dysautonomia had started getting much worse, and they were stuck with me some nights when I was having heart rate and blood pressure issues.   More than once, I was hauled down to the E.R.  Not good.  I was more of a liability with my inconsistent ability to stay vertical.  And I’m not sure anybody really understood what was going on.   I know I was stunned at how bad things were getting… and it scared me.  But I still thought I could work if I found something else.

Anyway, I have respect for them, and am glad I had the chance to work on a pediatric floor.  I’d taken care of kids on many other types of floors I worked  (neuro, head injury rehab, general med-surg) for years, but not a ‘real’ pediatric floor.   I greatly value the experience I got there.   I’m going to post this with a ‘public’ tag, hoping they see this if they get the messages.

When the dysautonomia first kicked in after I’d moved back from Texas, I wasn’t sure what to expect, so didn’t panic at first. I’d always been able to find some medication that helped.  I had to do a 3 week heart monitor that showed PVCs.  That was treated with medication, and it did help to some degree.  I could still feel them, but not as often.  But, I was still  able to work more than not.  I was starting to feel uneasy around the tinier babies… I would do all care and assessments without moving the baby off of the bed.  I’d ‘cradle’ them in my arms, and do everything that needed doing, but I was afraid to move them away from the safety of the cribs.

The summer months were hard on that floor because of the decreased census (kids not in school giving each other ‘bugs’). Being single, I didn’t have a spouse to help make up the difference in pay I was losing when hours were cut (I lost a month’s hours over the summer).  That was a problem.  I couldn’t work overtime when I was doing all I could to work the hours I was assigned.  Everybody got hours cut- and it was fair as far as that went, but I needed full-time work year round. The nurse manager contacted an adult med-surg manager who said she’d plug me into their schedule, but she never answered my  phone calls.  And I was getting scared.  I needed to work somewhere where  I wasn’t so anxious about the dysautonomia.  I didn’t trust my own body…but I wasn’t ready to give up working. Being a nurse has been my identity for a long time.  It was like that part of me was starting to die. But I didn’t want to give up.

I made the decision to work at a nursing home.  I’d worked in several before.  I wouldn’t have the fear of dropping a small baby/child when I’d get dizzy or feel the PVCs, and if I had to move someone, there was always a CNA around somewhere at the nursing home to do it together.  It was more team oriented- though any one of the pediatric nurses would help when asked.  I’d be pushing a medication cart around, and if needed, I could stop for a minute, bend over, and try to clear my head when the dysautonomia kicked in.   While I really was thankful for the chance to work pediatrics (the reason I went to nursing school 18 years earlier), it wasn’t a good thing in many ways anymore.   And, it was really hard to leave.  I really liked the vast majority of people I worked with.  They gave good care to the patients, which I respected.  Most of the night shift nurses were ‘older’ (not 20-somethings), and I enjoyed working with nurses closer to my age.  But I had to leave for many reasons.

I felt badly about the short notice they’d get when I was feeling the pre-syncopal symptoms.  If I was taken to the E.R. in the middle of the shift, someone (or a couple of them) would have to take care of my patients.  That wasn’t fair to them.   There were huge issues with the temperature of the break room (or any designated place I could go cool down). My heat intolerance was bad, but  at that time, I could still go into patient rooms and do what I needed to do, even if it was quite warm.  The babies’ rooms were especially warm, which they needed;  I understood that, and was  able to manage.  But it was nearly impossible to find somewhere that was cool enough for me to chart between assessments or meds (being in the rooms), see my lights going off, and do better getting through the shift- mostly because of one nurse who was considered the nurse manager’s ‘pet’.  That one nurse in particular was very nasty about the thermostat.   I didn’t care if I  was in the main area- I just NEEDED somewhere that wasn’t as hot as most of them liked it (I’ve deteriorated a lot since then, and can’t leave home without cooling vests, and my thermostat is never above 68- generally cooler, and often on when the outside temp is below 40 degrees). I leave home about once or twice a month, always with the cooling vests.   I could have pursued it with the ADA (Americans with Disabilities Act), but I’m not much into ‘forcing’ someone to do the right thing.   If they’re that nasty, I’m not interested in working with them.  There were many really great nurses to work with there, but if I couldn’t stay conscious, I was no good to them or the patients.

Since then, I worked about 8 months at the nursing home before I was essentially forced to go on disability.   I was passing out ‘hard’, and hauled off by ambulance at least 10 times in the last 2 months I was there. I don’t remember any of the ambulance trips.  By then,  I had an office job doing care plans.  I tried to go back  7 months later, but it didn’t work.  My body was crashing, and the pain from the repetitive motion and shoving those 200 pound medcarts around was triggering more autonomic stuff- whether at work or at home.  Nobody there would acknowledge I existed after I had to leave.  One went out of her way to avoid me at the grocery store.  I’d gotten sick- I wasn’t some sort of criminal !!

Since being on disability, I’ve deteriorated even more, and had some more challenges come up.  I’ve had leukemia (acute myelocytic, subtype M-3, or APL) with 19 months of near daily chemo of some sort- that blew me up like a toad (face/chin is still not right after a nasty cellulitis and ear infection during the worst of the leukemia), I lost my hair twice, and my eyebrows never did come back in right. But a local news anchor died within 2 days of diagnosis from the same thing, so I’m fortunate.  I’ve got degenerative disc disease in most of my spine, so chronic pain.  I had a knee replacement.  I had multiple pulmonary emboli, and spent a lot of time hospitalized getting that straightened out, or for complications from them or the warfarin. I had testing to see if part of my brain could be removed- come to find out I need all of it :p   Chronic pain and headaches are just daily life.   Chemo makes autonomic stuff worse; my legs are atrophying, so I am ‘working’ my thighs as much as I can to maintain the strength there.

But I’m fortunate.  I’ve had great experiences as an R.N.   I miss it daily.  I’ve been of some use to some family and friends when they’ve been going through their own medical disasters.  But, I had really hoped that I’d work on that pediatric floor for a long time.  It was my dream job when I was in nursing school.   I really enjoyed most of the people I worked with.  I respected them and the care they gave those kids.  I liked the patients (the abuse cases were hard to handle emotionally; they angered me), and learned a lot.

I’m also still able to live on my own.  There are times when I wonder how long that will last, but I’m doing what I can to make sure I can live here in my own space for as many years as possible.   I have a ‘new’ dog; she’s 18 months old now, and nuts, but a lot of company.   I got her when she was 9 weeks old.   My dad is still healthy and a big part of my life. I have two friends from when I grew up here. One has helped me a lot with straightening out my apartment after being packed 4 times to return to Texas… every time I packed, something else would go on medically; I’m no longer able to travel very far.  The TSA has issues with my cooling vests (they turn into liquid), and I can’t be ‘contained’ in something with no room to get up and move around. But,  I have adjusted how I do things (order many items online, get Schwan’s food delivered, shop in the middle of the night when it’s cooler, and there are fewer people getting huffy because I don’t move as fast as they do, etc.).   There are ways to get most things done.

SO, if any of those nurses I worked with see this, thank you for being part of the good things I remember when  I worked with you.   I may have only been there for eight months, but you left good impressions, and it was long enough to respect you.  I wish you all well.   I didn’t know how to handle what had started getting bad, and I’m SO  sorry for the inconvenience I was for you, as well as the times I sort of spooked some of the nurses I worked with when I’d hit the floor.   But mostly, thanks for the good parts 🙂

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.