Ready for a long one? Been crafting this one for a few days.
Postural orthostatic tachycardia syndrome (POTS) has been gaining visibility in recent years. When I first heard of it, some folks spoke of it with the same disparaging tone they applied to fads. Just the latest popular chronic illness to self-identify with! The more I learned about POTS, the more real it became. The stories my family and friends have shared of their experiences, while not mine to tell, are very real. In fact, I believe it was a family member that first suggested it might be at the root of some of the symptoms I had been experiencing.
My POTS journey began last fall when I sought answers regarding the dizziness and fatigue I had felt sporadically over the previous year or two. I had initially wondered if it was a blood pressure issue; while it was somewhat elevated during at-home readings, it was usually within the expected range. My physician referred me to a cardiologist who was very dismissive of the idea that I might have POTS, since I was in the habit of going for long walks and moderate hikes. Surely if I had POTS I couldn’t engage in such a strenuous activity! (Loved ones have since confirmed that yes, some folks with POTS absolutely can be physically active.) I was placed on a Holter monitor, despite my concerns that it would show nothing out of the ordinary since the dizzy/fatigue spells were so infrequent. Like a number of other tests before it, it suggested a clean bill of health. I was feeling pretty good (and ambivalent toward my medical team) so I gave up pursuing answers for the time being.
In a somewhat amusing twist, the fact that the experience with the cardiologist irked me so is what led to progress. In a routine visit to my physician’s office, I recalled the vexing visit while the physician’s assistant was taking my vitals. She noted that my numbers were unusually high and called the physician in. The physician determined that I do have a high heart rate due to anxiety, and prescribed me a beta blocker (Propranolol; I took one and hated how it sucked everything out of me). I was convinced (still am) that much of my stress is/was temporary, and that I did not need medication for my anxiety. I continued on as usual.
Fast forward a few months… During a session with a client, I began to get shakes. I still do not know how to describe the feeling; weak, clammy, and a need to just lay down. There was no way I could finish out my day. This happened once more a week or two later, and I knew the days of ignoring whatever it was were nearing an end.
I have been on a concurrent journey exploring my food sensitivities (more on that in a future post). I had managed to severely reduce my gluten intake (sometimes going a week or more without any at all) over the past year or so, and felt pretty good about it. I thought maybe I was experiencing a sugar crash, or that I needed more caffeine or water. Nothing I tried worked. Finally, I got the bright idea to Google it, to see if maybe it had something to do with cutting out gluten. Now, I am no expert, and I am paraphrasing Internet sources here, but what I took away from my reading was that eliminating gluten allows the body to process foods cleaner/faster, and that to combat these crashes, I would need to up my fat and protein. Imagine that, lil ol’ me, who grew up pescatarian and still struggles to eat more than a few bites of meat! Well, I tried it, and wouldn’t you know–it worked. No more shakes, as long as I eat protein and fat by approximately 9:30am (any later, and I start to feel the shakes coming on). I’ll share some of my go-to meals in some future post. ; )
Back to the POTS! At the last physician’s visit, they asked me to come back in six months (a.k.a. this September). Well, imagine my surprise when my physician confidently asserted her belief that I have POTS! Here I had come to believe that my issues were primarily food related (though if I’m being honest, the dizziness started months before I cut out gluten), and I was ready to tell my doctor as much. I had all but given up on POTS, and here I was being presented with the very tilt table test I had hoped for a year ago. The test itself actually felt much worse than any of the symptoms I had experienced to that point–but I attributed that to the feeling of claustrophobia I felt with the belt across my chest and blood pooling in my hands (the last several BP checks felt like torture). Even when I received the results confirming that I do indeed have POTS, I did not believe it. I did not feel that I could claim the diagnosis as my own; I felt like a poser. I’d never passed out. I did not feel like I was roughing it. I was doing okay.
I feel differently now. A lot of little things that I brushed off as me just being a weenie have started to make sense. Sitting in chairs with my feet on the floor has been uncomfortable for me for at least a decade. (If you’ve ever seen me at work or heard me ask to sit on the floor–this is why.) I always got dizzy trying to play a wind instrument, no matter how much I tried to work on my breath. Standing still for more than five minutes zapped me, while walking invigorated me. Actions that involved inverting my head to be lower than my heart (e.g., yoga) left me disoriented. Even now as I write this, I wonder if it is also the reason certain positions in… um, other activities… are fatiguing for me. I’m being vaguely transparent here in the event that other people with POTS find the possibilities enlightening, because that’s the thing with poorly-understood chronic illnesses: We’re figuring a lot of it out on our own. Just the other day, my seeking input in an Internet forum on a POTS-friendly office chair prompted another reader to make the connection as to why they have struggled with sitting in traditional chairs.
Sometimes we get things wrong, too. For a week now, I’ve had a burning sensation in my left leg. It seems to pool in my left ankle, but sometimes it congregates in my knee or even as far as the juncture between thigh and buttock. It took me a few days to pin this level of detail down. Initially, I just described it as “discomfort in my legs”. I had to monitor and tune into the sensation to realize that it was just one leg, and that it felt like a burn. (No difficult task there, as it drives me to distraction and is hard to ignore.) I had thought that it was my veins and therefore POTS-related, and desperate for relief I bought cheap compression socks (20-30 mmHg knee highs, so not the most effective but also a respectable place to start). After wearing them for a few days and finding no significant relief from the burn (though they might be helping to keep my heart rate down by 10 bpm or so), I considered a different option. I have another health condition that impacts my nerves, especially those in my left leg, but that has always been heralded by more of a tingling sensation. The tingling for me has become a sign that I am about to have a flare-up of this other condition, and so I take medication that clears the symptoms up within a couple of days. Five days into the burning sensation, I felt the beginnings of another flare-up. I took the medication and actually did feel a modicum of relief a couple of hours later. It is too early to expect the burning to abate completely, so I imagine I will know more in a day or two.
It is easy to wish that a doctor could identify and answer all our questions for us. I realize that when I bring “maybe it’s this!” to my doctor, I likely lose some credibility. I know how the world sees people who self-diagnose or look for health information on the Internet. In a perfect world where everyone had access to quality, affordable healthcare and a manager who could oversee our health from a holistic perspective, then sure, I could leave it to the professionals. Here in the real world, humans get flare-ups at inconvenient times (e.g., days before Christmas when PCPs are taking much-needed vacations), and have to find ways to get through it themselves. We also have to acknowledge the fact that there is still so much that even the medical professionals do not know. Given my physician’s dissimilar responses the two times we discussed POTS (spaced approximately 12 months apart), I suspect that she has come to recognize the illness more frequently. During my “research” (see, even I cannot treat it with much credibility) this past week, I learned about the potential connection between POTS and my nerve condition: Both operate in relation to the vagus nerve (and if you don’t know what the vagus nerve is, well I didn’t either until this year so please do your own armchair experting). It is possible that my nerve condition essentially infected my vagus nerve, and that may have exacerbated my POTS symptoms.* The vagus nerve is responsible for so much and yet has not been incorporated into mainstream healthcare, at least none that I’ve experienced. Its presence in the mental health sphere is beginning to grow, but it is still fairly niche from what I can gather. The notion that we can heal our own damaged vagus nerve through activities like singing and peaceful meditation is intriguing, to say the least. (The flip side paints a desolate picture: Those who experience regular stress and are not fortunate enough to have mental health breaks may bear the costly burden of a damaged vagus nerve.)
*I feel I should also clarify that I have no idea how long I have had POTS. If my difficulty with wind instruments is actually a POTS thing, I could have had it from as early as 5th grade. It is also entirely possible that it is something that developed (either entirely or in part) later in life. What I can say is that my symptoms seem to be escalating. Just today I made myself dizzy for hours, and all I did was strain to raise a few heavy-ish coats up off of a coat hook to get something out from under them.