A Diagnosis at Last – Dysautonomia


I imagine a lot of you are feeling anxious about the approach of Christmas. Now is the time to start planning how you can minimize the amount of stress, both from the pressure of internal issues and from the craziness (or loneliness) created by the here-and-now world. It’s reassuring to have a plan going into a holiday and not have to scramble at the last minute to think of things to protect and calm yourself.

What has helped in the past? What has been useful in other situations, and could it be adapted to the days around Christmas? If you write down your plan, you will have a place to jot down things as they occur to you. You might be surprised at the number of things you have thought up and at how creative some of them are. 

Remember that the winter solstice is on Wednesday, December 21, and Christmas Eve/Christmas Day is on Saturday, December 24/Sunday, December 25. That doesn’t give you much time to catch your breath between the two major holidays.



This cat is a little odd, even for a cat. He knows how to simultaneously do and not do something. That’s called passive-aggressive in humans and weird in cats. 

Here’s what’s been going on lately.

I was hoping that by the end of the year he might reset his circadian rhythm and start hanging out with me in the office. To prepare for him, I bought a large, sumptuous, but inexpensive cat tree so he could watch me from up high, where he is safe from being stepped on. I moved furniture to accommodate the cat tree and started working on the boxes of stuff on the floor. 

Spencer beat the deadline by a month! For the last four days, he has spent the day in my office, only an arm’s length from me. How sweet! Except he remains invisible. Perhaps he has body dysmorphia and can’t bear people looking at him, except when he is totally immersed in inhaling catnip or eating.

You see, between my chair and the window is my former kitchen table. Underneath the table are boxes. Spencer lurks right behind the box that is nearest to me. Now and then he stirs in his sleep and the tiny sound alerts me to his whereabouts. I moved the box a little to give him more room and to allow me to peek and see if he was there.

See what I mean by passive-aggressive? “You want me by your side? Fine, but you won’t know I am there. I get the last word.” Actually, it seems more like social phobia, doesn’t it?



There are new free Yoga and art workshops. We are finally starting to work on updating the resource section. (No promises that it will be done by the new year.)

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For those of you who are new to my blog, or have resumed reading after a hiatus, welcome! I’ll start by giving you a little background.

For about 30 years, I have had labile high blood pressure. In the last year, I have experienced sudden large drops in BP (between 50 and 60 points.) My current cardiologist was cautious about treating the high readings for fear of precipitating a low and risking me passing out and falling. He referred me to a hypertension clinic for a consult. Recently, I started having days when my blood pressure was normal +/- 15 points.

The hypertensive clinic ruled out lots of possible causes and then ran out of steam. I found one more possible cause of low readings by Googling and was able to document it. The breakthrough, however, was thanks to a survivor friend who suffers from polyvagal shutdown. She suggested I check it out, as one of the symptoms is a large drop in blood pressure. 

(An aside – RA survivors are treasure-troves of information, no thanks to their horrendous childhoods.  Many of us read voraciously in search of answers about our abuse and its effects, and many others have amassed a wealth of information about one of the many illnesses that are directly or indirectly caused by growing up with constant trauma.)

Polyvagal shutdown is a term for the trauma reaction of the autonomic nervous system. When fighting or fleeing isn’t possible, a person or animal goes into freeze mode. Think of a possum, tricking a predator into thinking it is dead and not as safe to eat or as tasty as living prey. I figure if it happens when no danger is present, it’s a kind of body memory, a flashback. I Googled it, found a self-screening test, and discovered that my symptoms matched….the controls. Rule that out.

But the possibility of some neurological issue causing the extreme lability made me ask for a neurology consult. The after-visit summary of my first visit gave me the idea I might have Parkinson’s Disease. I followed up on that and have been accepted as a patient in a neurological practice that focuses on Parkinson’s. They are in the process of ruling out other diseases, as Parkinson’s has no unique measurable quality that differentiates it from diseases with similar symptoms. They have also given me a physical therapy appointment to work on balance, as I trip over my own feet and fall a lot.

On Thursday, I had the second part of the evaluation to see whether the blood pressure issues were caused by a faulty autonomic nervous system. Well, golly gee, guess what? I flunked all four of the tests. That indicates that my brain is no longer able to communicate with my body to keep my blood pressure within a normal range. Finally, finally, we have the answer.

Preparing for the tests was very unpleasant. I had to stop using pain meds for three days before the test. I am soooo grateful for CBD and gabapentin! Without them, it was a miserable three days. I worried about experiencing pain during the tests and also about the possibility of having flashbacks, as I would be strapped down for two hours.

Yes, there was pain, but no more than I had before the tests began. And zero flashbacks! What a pleasant surprise. The techs were nice, and they talked a lot. I could ask a question when I felt myself drifting away and restart a conversation, so I felt very much in control.

I like the matter-of-fact way that I disclose these days. So simple: 1. the possibility of flashbacks, 2. because of a shitty childhood, and 3. talk to me – your voice keeps me anchored in the present.

Okay, so what I know at this moment, before reading the after-visit summary, is that my autonomic nervous system can no longer control my blood pressure and cannot tell me to sweat in response to heat. I now like the winter temperature to be ten degrees warmer than I did two years ago, so I guess my ability to adapt to temperature is faulty. There are other symptoms I have that may or may not be caused by dysautonomia.

I know something else. Like much of the psychological and physical damage done by ritual abuse, dysautonomia cannot be fixed and cannot be healed. But there are things I can do to manage the symptoms and make them less bothersome. I have this attitude toward the sequelae of ritual abuse – I cannot heal the damage, but I can live with it in a different way. Everything I have learned over the years will come in handy, I am sure.

I realize I will be devoting more time to self-care. I will exercise more and pay more attention to my diet and the timing of my meals. One lovely thing is that I have been told I need a high-salt diet. After all these years of deprivation, I can indulge in potato chips without guilt! And I can start using salt when I cook – I wonder whether I will love or hate eating salted veggies and pasta. We shall see.

More self-care, hopefully, will result in feeling better. That’s a big plus. On the minus side, though, it will leave less time for all the things I love. Working with GrassRoots, mentoring, supporting new projects, rewriting material on the website, answering email, and hanging out with old and new friends. It’s going to take time to find a new equilibrium.

I’ll keep you all posted.