Dysautonomia

Sixteen years ago I would walk up Grandview every morning either up to the 2 mile point before doubling back or on around the 4.5 mile  loop. My walking pace averaged 13 minute miles even with the hills. I was in excellent shape.

Except, there’d be times that my heart would flutter and knock around a bit. Sometimes pain would ache down my left arm. I’d return home feeling limp as a noodle, light-headed, looking in the mirror there’d be a green hue to my face.

After an EKG showed nothing unusual my doctor requested a treadmill stress test. I wanted so badly for that familiar pain to push down my arm, instead, as 10 minutes passed and my blood pressure was dropping to alarmingly low numbers the doctor stopped the test and had me sit down on a chair in the lab room with my head between my knees to keep from passing out. The doctor decided it was time to send me to a cardiologist for more tests.

I was dismayed when the cardiologist said at our first meeting, “”I don’t know why you’re here. You’re only 43. Your cholesterol is good, you don’t smoke, you’re not overweight, but your doctor is concerned so we’ll run some tests.” The tests didn’t revel any problems and hearing that my heart was more like that of a 30 year old was terrific. Unfortunately neither of the tests included a stress factor even though exercise is what caused the symptoms.  At that point I decided to stop throwing more money to the wind.

Fast forward a few more years to a visit with a fiber artist friend who’s also a retired nurse. She told about living with Dysautonomia, the dysfunction of the autonomic nervous system. It goes by a number of names, and categories. As she describe her symptoms I was amazed to hear the similarities to what I’d been dealing with but had no idea what caused them. We had a great talk that helped to clarify so much of what I’d experienced, and she advised me to drink watered down Gatorade every morning when I first wake up to help balance my electrolytes. I found a recipe for making a powder to mix in water to always have on hand. It’s remarkable how drinking a glass of it when feeling weak does help, usually quite quickly.

Here’s a link on Dysautonomia which she recommended. Over the years I’ve managed pretty well until a year ago when I had a bad episode at Black Sheep Gathering. Rapid heart rate, nauseated, foggy brained, a overwhelming feeling of inadequacy, tingling hands & arms, faint and very shaky I had to leave Ed part way through Friday. Fortunately our booth mate, Allison, is  very capable and competent.  Drinking tons of water with electrolytes, eating molasses cookies (a remedy that I happened to stumbled on) and sleeping for almost 12 hours waking up only to drink more water helped me to recover quickly enough that I was able to work in the booth Saturday and Sunday despite rather low energy.

That episode was scary and sobering. I figured it was brought on by fatigue, stress and not staying well hydrated. The weekend before BSG was the annual Sister’s Rodeo when four of us spend several days/nights in Sisters. Staying up late chatting, putting puzzles together, knitting, singing, and playing board games was a great deal of fun. I love that time hanging out with these dear friends and going to the rodeo but by the time we returned home I was feeling exhausted and stressed at the thought of the final prep for BSG. I determined that going forward I wouldn’t schedule anything the week before a show and to take care to stay well rested.

The episode in Moscow was far worse than the one at BSG in ’15. I have no idea how high my heart rate was. My hands, arms and mouth were very tingly. Along with the nauseated feeling I also experienced chills, shakes, fever and overwhelming dread. I’ve since had two more bouts, none quite so bad though the last one, which happened in early October knocked me off my feet for four full days. By the fourth day I knew I had to see a doctor.

Meanwhile my old doctor had closed his private practice to take a position as a hospitalist. I was able to get copies of all my records the last day the office was functioning. The records were filed away in case they might be needed someday. For about seven years we didn’t have a doctor, nor did we need to see one. We try to maintain a healthy lifestyle to avoid doctors except as needed.

I hadn’t talked to my new doctor about it since I’d never been officially diagnosed and the symptoms can sound so flakey. So there I was trying to tell her umpteen years of history, how I could usually handle it with electrolytes but now it was getting much worse. Dr Jessica prescribed meds for my low blood pressure. I wore an event monitor for the past four weeks and will see a local cardiologist in a couple of weeks for the results.

While scanning copies of my medical records I read through them. Reaching the last page with the final notes from the good doctor I was stunned to read, “It is felt the patient has dysautonomia.” All those years ago I was given a diagnosis. It’s somewhat baffling that he didn’t mention it to me, or perhaps he did in a way that it didn’t register as anything to look up when I returned to work that day. During that time I worked in reference at the public library and often helped people look up information on diagnosis they’d been given.

It seems so odd that for the past seven years or so I thought I was self-diagnosed when all this time the word had been in my file.

The sobering thing is it seems that doctors aren’t very aware of treating dysautonomia. There was one cardiologist who’d specialized in dysautonomia who was at OHSU in Portland. Just several years ago she was making plans to set up a dysautonomia health center for research and patients, then suddenly she moved to a small town over 5 hours away, and she’s no longer on the dysautonomia specialist registry. Right now there are none in Oregon, that I’ve been able to track down.

One last story is of friend in her mid-thirties, another RN. Shortly after giving birth to her second child she started having fainting spells and passing out. Twice she was hospitalized but the doctors were mystified. They knew she had low blood pressure but why was she getting so sick? One day while listening to her tell about her health struggles all the red flags went up in my brain. I asked if anyone had mentioned the possibility of dysautonomia. I emailed her the link I shared above. She immediately started digging and was flabbergasted to read of so many of her symptoms. She’s the person who tracked down the specialist practicing in Portland at that time (about five years ago) and had a full work-up down with the resting diagnosis of POTS. She has been affected much more severely than I. Her episodes can knock her down for up to ten days, and she’s a tough woman who’s not a whimp about anything.

Here are two more articles for those who may be interested in learning more.
1)A peer review article through NIH
2) Article written specifically for a working group at Johns Hopkins Hospital

I hope this very long post in informative and even perhaps helps someone who may be dealing with vague symptoms that have been messing with their energy levels, or lightheadedness.

On the whole, I’m extremely thankful for the sound body that I do have!
Tomorrow is almost here. Thanksgiving. As late as this posting is I’m thankful that I don’t have a huge dinner to prepare, only a pumpkin pie and perhaps some rolls. Happy Thanksgiving to all who’ve read this far! May it be a day filled with blessings and gratitude.

Advertisements

Author: Wanda J

I never dreamed my life would be entangled with fiber and the tools used to produce fibery items. When I bought a boat shuttle Ed looked at it, decided to make a better one and the rest is history. For a decade he made shuttles, crochet hooks, knitting needles, until his spindles became so popular that he had to devote his time to making them, as well as Great Wheels aka Walking Wheels. Free time is spent reading, trying to coax food from the ground, and playing in the creek near our place. I love long walks and camping far from crowds. Playing my fiddle beside a stream or with good friends brings sweetness to my soul. Sundays we try to set aside for worshiping God with our small Quaker meeting.

3 thoughts on “Dysautonomia”

  1. So glad to hear you have a diagnosis, but sure wish there was a specialist nearby to help you. I’ve never heard of this condition; it sounds like a serious life-disruptor!

    1. With more awareness perhaps more doctors will be compelled to pursue specializing it in. It will be interesting to find out how much the local cardio will know about it. I’m praying that he’s knowledgeable, or will be open to researching it.

  2. I am grateful, Wanda, that you’ve decided to share about your experience with dysautonomia, as well as the stories of people you know who also live with it. You’re certainly helping spread awareness, and that’s a very good thing. I hope your new doctor and the local cardiologist will be able to help you get back to having more control over your condition.

    I am bookmarking your post and will make sure to follow the links you’ve shared and read the info they provide. Given that I live with chronic fatigue syndrome and that I’ve noticed some symptoms (which are also common in dysautonomia) have started happening a little more often and a little more acutely, the information might turn out to be very useful. Thank you!

Comments are closed.