Update 06/05/17: I happened to notice that the graphic that accompanies this post got cut off on the left side when I saved it, and I didn’t notice. That systolic blood pressure should be 111 rather than 11. I don’t think I would still be blogging if it was actually 11… 😉
First off, a bit of a disclaimer: I know I am usually not very good with adding content warnings/trigger warnings and I apologize if, as a result, anyone has read anything upsetting on this blog that they would have preferred to avoid. This post is long, and while it doesn’t go into detail, it touches on domestic violence, child abuse, alcoholism, suicide attempts, and child molestation.
Remember that stupid
dog clicker heart monitor I had to wear for two weeks? The results came in and they found nothing significant. Which is about what I expected, though I was hoping it would at least demonstrate what I believe to be positional orthostatic tachycardia syndrome (POTS) that I think I am experiencing. My doctor referred me to a cardiologist to try and figure out what is really going on, and a few days ago, I had that appointment.
It wasn’t what I was expecting, at all. We started off a bit on the wrong foot, as he asked me to describe what was happening, but then was anticipating what he thought I was going to say, and finishing my sentences – which is annoying, especially since I wasn’t going where he thought I was going. But when he realized what he was doing (and that I was getting frustrated and clamming up) he backed off, and let me explain.
It’s really hard to see a new doctor; I have to try to take over a decade of weird symptoms and try and convey them as concisely as I can. I don’t want to leave out something that might provide the key to all this, but I don’t want to overwhelm with too many details and have them decide I’m some sort of attention-seeking hypochondriac. In this case, I was there for the heart issue, but since I think it’s related to all the other stuff, I had to bring that up too.
After a few minutes, he interrupted with a question that seemed to come way out of left field: “Do you have a history of trauma?”
“Uh… trauma? Like, physical injuries?” I replied, confused.
He said that wasn’t what he meant, and went on to explain that when he encountered someone with these types of issues, that they tended to be individuals that had a lot of psychological trauma in their pasts, particularly in childhood. He mentioned a book called “The Body Remembers” that explained how this early trauma could manifest later as strange physical symptoms, as the body had been conditioned to be reactive.
I replied that I had heard of this theory before, and that yes, I had “a pretty rough childhood.”
He went on to say that things like parents arguing, or issues like not feeling like you belonged, being misunderstood, could be damaging. I think, with the latter statements, he was referring to my autism, that I had disclosed in my explanation of what had brought me there. He suggested that I read that book, and consider things like yoga and meditation to help with what he felt might possibly be something like PTSD.
I explained that I was working with a therapist, who had given me the ACE (Adverse Childhood Event) quiz to take, and that the suggestion of PTSD had come up before.
He was familiar with the quiz: “I’ll bet you scored, maybe, a three?”
He got a funny look on his face that I couldn’t read. Shock? Disbelief? Skepticism? When I discussed it later with my partner, she suggested that maybe it was not so much disbelief as that he just was taken aback to see someone who claimed that level of childhood trauma to be as functional as I am.
If I’d scored a nine, he said, then I hadn’t been completely forthcoming when I answered his question, had I? Because if he remembered the questions on that quiz (which included things like not having any food in the house, family members going to prison, and sexual abuse) accurately, and I’d survived even some of those things, then basically I’d been in a war zone and my body had probably been put into a chronic state of hyper-vigilance.
I nodded, but didn’t offer to elaborate further. I appreciated the fact that he was thinking out of the box, that he was one of the few doctors to actually validate that all of my symptoms were probably connected, and that he was also one of the few I’d seen who left his computer outside the room and actually was talking with me rather than interviewing me from behind a laptop screen for an EMR form, but I had just met this person five minutes before and I wasn’t going to start volunteering gory details.
I thought about the questions from the ACE test, and examples of how I arrived at a nine out of ten… Did he really want to hear about the time when I was nine and there was literally nothing to eat in the kitchen for days, except a bag of stale puffed rice, some wilted celery, and baby formula? Or how one of my first memories is of my father threatening my mother, and putting his fist through the side of a dresser beside her head? How many mornings started out with my mother screaming at me over the things I’d forgotten to do or screwed up, sometimes punctuating the tirade with blows, and more than one time saying she should call social services to come take me because she didn’t know what to do with me?
How about the time my mom OD’d on pills and I watched her friends trying to make her throw up? The incident when I was six-ish and one of her crazy-ass boyfriends blew a hole in the wall of our living room with a shotgun? Speaking of crazy, there was the time when I was about eight that I ran, terrified, with my grandmother through a neighbor’s yard and hid in the bushes in the dark while my drunken grandfather chased us in his car.
Or what about the times I was molested because no one was watching out for me – one time, trapped by a creep in a bathroom in my own house when my mom was having a New Year’s Eve party and was too drunk to keep track of me. Oh, and also, I was drunk too. I was only eleven. Luckily it didn’t get far because my cousin saw him follow me into the bathroom. My mom’s friends dragged him out of the apartment and beat him literally to a bloody pulp, and I threw up licorice and beer all over myself.
Nope, not going to any of those places sitting in a room face to face with a complete stranger. Hell, I haven’t even told my therapist some of those things.
“Like I said, I had a rough childhood. A really rough childhood” was all I offered.
Anyway, I asked about the POTS, and when he left the room to review my chart, he had his nurse come back in and do what ended up being a really half-assed and useless blood pressure/heart rate test: I’d been sitting there on the edge of the exam table for about 15 minutes, wondering if they’d forgotten me in the room, and suddenly she popped in (the door was sort of behind me) and loudly announced she was there to re-take my blood pressure, both sitting and standing. Except she had startled me so bad I literally flew off the table so now my heart was already racing, and I pointed that out. She blew me off.
From everything I’ve ever read, you are supposed to take seated blood pressure readings with a person sitting upright, feet on the floor, and the arm at roughly heart level, supported and relaxed. I was perched on the edge of a table, feet dangling, arm held rigidly out. My heart was still hammering from when she came in – I have a terrible startle reflex. My blood pressure was something like 115 over 70 but my heart rate was 111 and hammering in my chest. Again, I pointed out that this was about 30 beats over what it had been when she first took my vitals, because I’d jumped so hard, and that this was not going to be accurate. She dismissed this with “let’s just try it and see.”
I stood up – she took it with my arm pulled almost all the way down at my side, held somewhat rigidly so that I wouldn’t yank the hose taut. My systolic rate had plummeted about 25 points but my heart rate only went up to 125. I again suggested we re-take it, because I knew this wasn’t representative of what I’d been trying to describe, and she just said we’d let the doctor see what he thought.
He diagnosed orthostatic hypotention, based on the BP drop, but not orthostatic tachycardia, because my ‘heart rate had gone up less than 15 bpm’ and I had a normally fast heart rate to begin with, based on the heart monitor results.
Huh? This was news to me. According to two different fitness watches, my resting heart rate is about 65-70, normally.
I questioned him on that, and he showed me on the graph as an example where it was 101 at 12:30 am. “But that’s because I got out of bed and stood up to go down the hall to the bathroom. That’s actually the problem I’m trying to describe,” I tried to explain. I think he was already in ‘I’m done here and need to go on to the next room’ mode and wasn’t really listening any more. He vaguely mentioned that if I had a blood pressure cuff, I could try testing it lying down, but didn’t really elaborate on how, or if he wanted me to give him the results.
He prescribed Florinef for the OH, said he wanted me to do a treadmill stress test with an echocardiogram, though he expected it to be normal, and wanted to see me back in two weeks. When I asked about side effects of the Florinef, which basically increases blood volume by making your body retain salt, he said there were no significant psychiatric side effects. I clarified that I meant physical effects, as I have had very bad reactions to some medications, and he said briefly that it could raise my blood pressure a bit but I shouldn’t worry about it. I was dismissed.
OK, so this was a mixed bag of an appointment. The doctor gave me some different things to consider, and he seemed very perceptive in some ways. I understand that there were other patients to see, and this is maybe why things got so rushed at the end. I did not care for his assistant at all, who was wearing such strong perfume that I wanted to gag and run away even before she did such a crap job with the blood pressure comparison and patronized me when I voiced concerns. I am already panicking over the last hospital bill I just received for the heart monitor episode, and I know there is still another one coming from the monitor company itself; I have no idea what this treadmill test/echo will cost but I suspect it won’t be cheap and won’t be completely covered by insurance, and if he’s expecting it to be normal, do we really need to do this now?
Also, considering that the sodium oxybate I was given for Narcolepsy in 2015 raised my blood pressure so dramatically I saw stars and almost fainted, I don’t think I’m being paranoid to be at least a little concerned about another drug that affects sodium levels. And I think ruling out POTS based on that slackass ‘test’ is wrong, and I intend to prove it to him. Maybe it isn’t even POTS, but it’s something and that wasn’t a fair experiment to rule it out.
I downloaded a sample of that book he was talking about and am reading it; it’s interesting and I’ll probably just order the full book, though it’s pricey for a Kindle book.
I have no intention of taking the Florinef before the end of next week, at any rate; that is when I have to go in for my annual ‘wellness screening’ for my employer’s insurance. You have to meet eight out of ten of the criteria to get the discounted rate, and if you have anything out of whack at all, you have to go in for quarterly monitoring/counseling sessions. There’s no way I am risking them catching me with a high blood pressure reading.
As for the treadmill test, I am going to see if I can get a price estimate, and schedule it far enough into the future that I can backpedal and cancel it after I discuss it with the doctor at the recheck. And in true Aspie spirit, I spent an entire evening researching how to do a ‘poor man’s tilt table test’ then downloaded forms, instructions, and a spreadsheet template I could use to track my results. I am going to do morning, midday, and bedtime readings for a few days, scan it all, and submit it to the doctor via the patient portal.
I think, based on my impression of him, that he’ll appreciate the information, and actually give it consideration, but there’s also the chance he’ll decide I’m a nutjob. I’ll take my chances, I guess. This is the closest I’ve managed to get towards actually narrowing down some of my health issues – even the orthostatic hypotention by itself points to dysautonomia – so I’m hoping it will help if I can show what is going on.