Frustration and Unpredictability of Dysautonomia

I’m supposed to be over at my dad’s  friend’s home, eating tacos with them.  I’d looked forward to it since getting the invitation this morning.  I took a shower (not a simple task when temperature changes are risky) and got my extra ice vest inserts packed into the insulated bag, and the ‘full’ ice vest ready to go.   I got in the car, and headed over there.  By the time I got to the first stop sign, I could already feel things changing.  I hoped that some cool air, and ‘thigh squeezes’ would change my heart rate and blood pressure (I couldn’t measure it in the car while driving, obviously, but anybody with dysautonomia knows when it’s changing).   No such luck.

I got to her street, and since I wasn’t feeling any better, decided it was better to circle around and go home.   I’ve had a mental plan for years for what to do if I get symptomatic in the car.   The air conditioner (which is usually on anyway), talking to myself, thigh squeezes, and knowing where the side streets are in case I need to pull out of traffic are at the top of the list.  There is no scarier place to have symptoms than when I’m in the car, driving.  If I have symptoms before leaving home, obviously I don’t drive- but tonight, it hit kind of fast. Fortunately, I do have enough warning before I pass out to safely pull over, but  I feel badly for being such an unpredictable guest.

During the last few months, I’ve had a lot of stuff going on that has made the dysautonomia (POTS and some neurocardiogenic syncope- not to the point of syncope tonight) labile.  I’ve had a scare with my kidneys (that turned out to be just a scare, so dodged a bullet there).  I’ve had to change the dose of my primary dysautonomia beta blocker to HALF of what it was a few months ago- my blood pressure got low enough to cause the decrease in kidney blood flow and change my lab values, which is not a good thing.  I’ve had a lot of neck and lower back pain that has required some tests that didn’t show anything new (degenerative disc disease, and some bulging discs in my neck).  I still have another  test in a couple of weeks (EMG- needles in my thighs with electricity pulsed through them; I’ve had it before- it’s no big deal; nerve damage is already known- just have to see how fast it’s changing).  My right thigh is visibly shrinking in a weird, not normal way (like maybe if I were losing weight…. then both thighs should ‘shrink’ the same).  Diabetic neuropathy is getting worse with burning leg/thigh pain, as is gastric reflux.   The reflux issue has some other tests pending as well, but the ones that have been done show esophageal spasms as well as chronic gastritis.  Toast is my friend. The diabetic nerve pain is a burning like I’ve never felt before.  I have been awakened by it, and it feels like what I’d imagine if someone put some type of accelerant on the outer part of my entire right thigh, and lit it on fire- yet when I touch it, it’s numb.   I guess it shouldn’t be a surprise that the dysautonomia is going through some “out of whackness”.   A lot of other stuff is out of whack.

I hate these fluctuations and changes in the status quo.   I get used to one way of my “normal” and how to adjust my life accordingly, and then something else happens.  The whole thing gets weird again, and it’s another ‘normal’ to get used to.  I don’t like being undependable.   I’ve always been punctual and if I said I’d be somewhere, I showed up (aside from the dysautonomia and disability stuff that ended my working career as an RN). My dad is used to my 50-50 chance of showing up.  Not everybody knows this about me, and I feel bad when I bail out.

The shower could have made things less stable.   I have horrible heat intolerance, and showers can be a problem.  I generally don’t take a shower and go somewhere in the same day- I need some time for things to get back to ‘normal’ after being exposed to the warm/hot water (I like hot showers… my blood vessels don’t).   I didn’t feel bad after getting out of the shower (a bit winded, which is ‘normal’, but nothing weird).  I allowed time to rest (about an hour), so thought that would be enough.  Guess not. 😦

Anyway, my head still feels a bit loopy when I stand up.   I just got done with a plate of food my dad’s friend sent over- which tasted really good, and had some salty stuff which probably helped.  I just feel bad that I couldn’t be over there with them, as we’ve had fun the other times we got together.

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

 

 

 

 

People Who Literally Make Me Sick (Dysautonomia)

That may sound ridiculous, but within the walls of dysautonomia,  anything that triggers a fight or flight response is something to be avoided at all costs. Unfortunately, that includes  avoiding people who come across as harshly combative, unapproachable, condescending, promoting hate, and/or having no respect for anybody but themselves and their very narrow circle of (usually) legalistic Christians.  It’s sad.  Several of these people are folks I’d hoped to reconnect with, or at least get to know better.  But when interactions with them actually trigger the heart rate abnormalities and changes, and other dysautonomia symptoms, I can’t have anything to do with them.  😦

I love the Lord with all I am.  I try to look at things with a non-judgemental view, and realize that I’m only responsible for my own actions.  I’m also supposed to be a representative of Jesus, and He Himself said that He is love.  Love doesn’t have a place for hate, rudeness, impatience, unkindness, abruptness, superiority, pride, or anything else that pushes others away.   I feel like I fail that because of not being able to physically tolerate hostile and confrontational people.  I don’t like that my life is better without some people in it, and for that ‘all’ I can do is pray.  Being sick because of them helps nobody. 

I see so much hatred for our President.  That saddens me.  I don’t have to like what he promotes, or believe anything he believes. But promoting and spreading unkind words doesn’t reflect him  nearly as much as it does my own character.  I’m supposed to pray for him as well.  It’s the most powerful thing I have for those who disregard what I believe… and just because I don’t agree with some things doesn’t mean that I disagree with everything.  I don’t claim a political party… I don’t identify with any of them because of the extremism, which always repels more than it engages.

I see so much judgement for those who aren’t Bible-thumping, legalistic Christians (BY Bible-thumping legalistic Christians).  I believe in the Bible very strongly. But I also believe that I don’t know a whole lot more than what I do know.  Because of that, I don’t feel like judgement is my right.  I believe that a Christian is supposed to represent Christ, and not be judge, jury, and executioner for people they don’t know.  I can only judge myself.  Each person will answer to God one day… not me.  I don’t believe in legalism. I believe in a relationship with God that is my own. I can’t live someone else’s relationship with Christ.  I can’t determine who is ‘enough’ of a Christian.  I’ve only walked in my own shoes.

I see so much condescension and disrespect online. Some people I know, but most I do not, and am thankful for that.  I can still pray for them.  I don’t have to like someone to wish them better than what they offer me.  I have had to block some of these people from my life because of the physical reaction to their apparent demeanor in whatever way they’ve communicated with me.  A huge part of communication- the non-verbal- is missing from anything written.  I don’t understand why some people can say things I strongly disagree with, and I don’t become sick, while others leave me needing medication to regulate my heart rate.  Maybe it’s because I’ve heard their tone, general demeanor, and know their personality well enough to know they typically communicate with kindness and respect.  I don’t know.

There are a few people who have been SO personally ‘combative’ in how they interact with me.  One refers to me as ‘human debris’, and has been blocked from my life for several years. I wish him/her well in his/her life, but he/she’s too toxic to have anything to do with. There is another person who comes across as generally condescending in a bizarre way.  He/she also has some indescribable quality that pushes me away. I don’t like that I feel that way, yet I can’t control the way my body responds.  I’m not proud of that. I’ve tried to form some sort of relationship in the past, but there’s a huge wall.   Others who have pushed my body past the limits of being physically stable are those who have been friends of friends on FaceBook… unfortunately, their hateful combativeness with any interaction ended up in deleting the friend (at least on FaceBook; with some, there is still e-mail contact away from the venomous ‘friends’ of theirs.  IF someone had talked to someone I actually knew like that, THEY would be the one cut loose.  I won’t tolerate attacks when something is on a page with my name on it.

There are others who condemn someone very close to me for things that they may have heard about, but got either a biased report, or just enjoy grudges. The people who were there are not nearly as hateful as those who were not.  I will stand behind this person any day of the week.  He/she has always had my back. Has he/she annoyed me at times? Yep.  I’m sure I’ve done my share of being annoying.  (Anybody want to cast the first stone?)  My mom was very hard to live with.  She taught me that appearances and my weight determined my value as a person, and treated me as such. (In her own weird way, I know she loved me, but she was very damaging; I still love and miss her).   But, that is always blamed on my dad- by someone who wasn’t even there.  There are a lot of judgmental eyes on the most outwardly “Christian” side of the family… and that saddens me.  I had no idea how deep the hate ran until I moved back here, hoping to be closer to all of my family.  Evidently, they have no need or desire to move forward and be forgiving- or have anything to do with me, because of their feelings about my dad. (Not all, mind you…. but enough to make things difficult). 😦

Anyway, dysautonomia isn’t just about the physical limitations of standing or sitting too long, being overheated, or having pain push me over the edge. It’s also about being triggered emotionally,  while having all of the cognitive parts of the interaction being very rational, but having my body become ill.  It’s incredibly embarrassing.  I have medication that helps to some degree, but prevention is always better.  And sometimes prevention means avoidance.

I will always wish those people well.  🙂