Happy Dysautonomia Awareness Month (from Someone Who Apparently Has It)

When I think about the timing of this year, I'm amazed at how well it all worked out. For example, I moved just in time to start going to local writers' meetups, which is how I found out about the first ever Georgia Indie Book Faire, which I tabled at last month.

But in an even wilder example: I started a health journey in June of this year and was diagnosed with two(!) conditions under the dysautonomia umbrella in October. It was only after being diagnosed that I was informed October is Dysautonomia Awareness Month. Perfect timing!

I’m still reeling from my diagnosis, so I need to yap about it.

The Swollen Ankle

As some of y’all know, I moved in March of this year. One thing about moving to a new place is that you’ll often have to find a new doctor, one closer to your new location. After getting settled, I did just that: I changed my location on my insurance’s app and found a new PCP who looked nice.

In June, I went to see that new doctor about the fact that my left ankle had been swollen for months. This appointment was my first time seeing her and, for some reason, I got really lightheaded mid-conversation. I let her know, she put a blood pressure cuff on me, and I was told my BP had dropped to 80-something. 

In a way, I felt relieved to have finally had symptoms in front of a physician. First of all, a doctor's office is the safest place for something like that to happen. But secondly, I finally had a witness to something I'd been experiencing for, honestly, as far back as I can remember. Something I’d brushed off repeatedly. Previous times when I’d come close to passing out, I told myself I was being overdramatic. I told myself I was weak and lazy and that it was all in my head. However, that blood pressure reading was validation that I was experiencing something very real, with measurable effects to my vital signs.

The doctor’s team gave me water, I threw it back, and I started to feel better. I then went home and posted on Facebook about the event, at which point several friends commented a variation of "My doctor thought I was just really susceptible to dehydration, but it turns out I had POTS."

The Process

My friends’ suggestion prompted me to look into this condition I’d heard of, but didn’t know a lot about. The more research I did about POTS, the more I realized my symptoms did, indeed, align with the condition. My constant fatigue and lightheadedness (I'd seen my previous doctor about that, was diagnosed with "not having anemia", and that was that), my heat intolerance, the fact that cleaning the house made me dizzy, and the fact that I couldn't take long, hot showers without feeling like I was going to pass out...it all sounded like POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome and it’s a condition that falls under the umbrella of dysautonomia. 

I asked my new doctor about getting tested for POTS and she kick-started the process. Pro tip: Always come close to passing out the first time you see a new doctor. That's the best way to be taken seriously, I’m convinced. (lmao)

The symptoms of POTS are pretty vague, admittedly, so it's important to rule out other conditions. This can be quite a process, though. At the orders of my PCP, I wore a heart monitor for 2 weeks, got an echocardiogram, had a bunch of blood drawn and tested, and just generally worked to rule things out.

My doctor ordered my blood to be tested for levels of vitamins and minerals they don't usually test for. The only thing that came up was that I'm deficient in vitamin D - which was strange, because I'd just gotten home from Florida, so I should've had more vitamin D than ever. We ruled out hypothyroidism and diabetes.The results of the heart monitor and echocardiogram showed that nothing was structurally wrong with my heart. But, regardless, assured that it wasn't any of the other things, I saw a cardiologist about the test results. 

After a quick appointment, that cardiologist set me up with a video visit with a different cardiologist, one who seemed to know his stuff and even asked me if I'm hypermobile. (I'm going to look into that next year, because hypermobility issues do tend to go along with POTS and I do have some weirdly flexible joints.)

The Tilt Table Test

My new, knowledgeable cardiologist scheduled my tilt table test about a month in advance. That gave me a month to wallow in self-doubt, ask everyone around me for reassurance, and panic, plagued by visions of the cardiologist telling me there was nothing wrong with me. The delay time also gave me plenty of time to get nervous about how bad the tilt table test was really going to feel.

A tilt table test, by the way, is apparently the best way to test for POTS and other forms of dysautonomia. Basically, they put an IV in one arm, a heart rate monitor on one finger, and a blood pressure cuff on the other arm. They then strap you onto a table that has a little platform at the bottom. You start lying down, then they tilt the table up and watch how your body reacts.

I want to take a moment here to appreciate my amazing friends and my loving partner, Noah. I want to thank the friend who asked, "Wait, you haven't been tested for POTS, yet?" when I told them I was curious about the diagnosis. I want to thank the friends who were already diagnosed and encouraged me to seek it out. And I want to give a special acknowledgement to Noah, who endured weeks of anxious texts from me and consistently reassured me that he was in my corner, that he'd seen my symptoms in person, and that he believed me, regardless of what the test showed.

The day before the tilt table test, I wasn't supposed to have any caffeine. I endured a horrible headache in the absence of my beloved energy drinks. I told myself it would be worth my suffering.

On October 11th 2024, the day of the test, I woke up just early enough to eat a light breakfast 6 hours beforehand. (I’m still not sure if I was supposed to do that. One piece of paperwork said “no food 6 hours before the test, you can drink a little water” and the other one said “no food or drink after midnight.” Always check those notes!) After eating my (possibly illegal) light breakfast, I took a shower, felt like shit, and was relieved.

"I'm plenty symptomatic," I said before going to the hospital for the appointment. "Hopefully something will show up."

And, boy, did it show up.

My partner drove me to the hospital, weaving in and out of the traffic that made no sense for a Friday afternoon. We got there super early, which was my plan. That gave me plenty of time to navigate the hospital, fill out any paperwork, and hopefully calm down a little bit. I did indeed make it with plenty of time. I was much less successful at calming down.

Long story short, I reacted in record time to the tilt table test. My heart rate was already elevated when they hooked me up to the machines. The second they tilted me up, I started to feel off. Within a few minutes, my legs felt like jello, I was seeing stars, my ears were ringing more intensely than usual, and my entire body was clammy as I felt myself slip into the all-too-familiar state of "I'm about to pass out." I kept mumbling, “Oh, this is really bad. I feel really bad,” as the world tried its hardest to slip away from me.

Mercifully, once they'd noted the change in my vital signs, the nurse then lowered me back down. The doctor came in and told me that, not only do I have POTS, but I also have vasovagal syncope. Apparently my heart rate initially shot up, and then dropped down significantly. Or it might have been my blood pressure that dropped significantly. Honestly, I was too busy regaining consciousness and grappling with the new reality of having a diagnosed chronic condition. As much as I tried to pay attention to the specifics, all I heard was:

"You have POTS and vasovagal syncope."

And I responded, "Is that a diagnosis? I have a diagnosis?!"

The answer was yes. From that point on, I finally knew what the hell was going on with me.

Reflections / The Future

I know this is just the beginning of the journey. Next year, I'll tackle the possible comorbidities - the other conditions that tend to go along with dysautonomia. But, for now, I'm content to have gotten the big one(s) out of the way. I have two answers, which is two more than I started with.

POTS and vasovagal syncope both fall under the umbrella of dysautonomia, as do multiple other conditions. Dysautonomia is relatively common, affecting millions of people (that we know of.) If you’re curious about dysautonomia, you should really check out this article by the Dysautonomia Support Network. They’re better at explaining it than I am.

I feel lucky. Although I've suspected something was off with me since I started getting headaches from fluorescent lights in middle school, it only took me 4 months of near-constant doctor’s office visits to finally get diagnosed at the ripe old age of 34. This was only possible because I was in the position to take several days off from work for appointments. I also have really good health insurance through my day job. It took me years and years to get diagnosed because of self-doubt, because I kept gaslighting myself and believing my symptoms were “normal”, and because I didn’t have the money. Shit, I barely have the money now. That tilt table test alone had a “copay” of $250.

Additionally, one symptom of dysautonomia is brain fog. Every time I’ve started a health journey in the past, I’ve either given up or straight-up forgotten it. So I’d like to thank my partner and my friends again, for keeping me on track and reminding me to keep looking for answers. I’d also like to thank all my friends who had already been diagnosed with POTS, VVS, and general dysautonomia, who were all so willing to talk to me about their experiences.

While I’m thanking people: shoutout to my bestie Nora, who conspired with Noah in the hours after the test. Together, they came up with the idea to get me a cake that said “Congrats, it’s a diagnosis!” I still haven’t finished it, but I feel really lucky to have people in my life who are so happy to celebrate me (and my new diagnoses.)

I'm also fortunate to have found a doctor that was willing to hear me out. Not every doctor is informed about POTS or other forms of dysautonomia. Mine didn't claim to be an expert, but did send me on the right path, for which I'm eternally grateful. My current doctor didn't dismiss my concerns and didn't even blame everything on my weight like former doctors have. I'm really, really lucky and I'm never going to take that luck for granted.

But in a sense, I feel like a late bloomer. If I'd known what it was sooner, maybe I could've avoided certain situations that made my symptoms flare up. I would've known to not push myself on especially hot, sunny days. I would've known the importance of staying hydrated. I would've had a reason why it hurts to stand up for long periods of time. I would’ve known I wasn’t just “lazy” or “out of shape.” The fact is that, for a long time now, my body has been working overtime just trying to keep me going. I can't even fathom how deep my deficit of energy actually goes. I've been doing too much for too long because I didn't know what was going on. I’m the opposite of lazy; I’ve been habitually overdoing it for years!

If you think you have some form of dysautonomia, you might. I'm not a medical professional, but I do know that, if your symptoms align with those of POTS and similar conditions, it's worth looking into. These conditions are more common than most people realize. Having a name for your condition means you can find out which treatment works best for you. This morning, I chugged water with electrolytes on the way to work and I felt better than I have in years. Not even a week out from the date of my diagnosis, knowing what’s going on with me has already been a game changer. And if you do finally get a name for your condition, I think you'll agree when I say: it's worth the effort.

TL;DR: Happy Dysautonomia Awareness Month from someone who is, suddenly, all too aware of their own dysautonomia.

Whew, this was a long one. If you read this far, I really appreciate you. I hope you have an amazing day and a wonderful October.

Your friend,

Janvier Olszon