The Joy of Diagnosis

 Alternate Title: Let’s Get to the Good Stuff

I still remember the cardiologist exasperatedly saying “why do they keep sending me these teenage girls?!” (I did not have a heart problem, thank God, and he knew it immediately.) 

Unlike every other doctor I had seen up to this point, including the NEUROLOGISTS, this cardiologist knew exactly what my neurological condition was and I walked out of his office that day with an official diagnosis. In the car ride home, I cried tears of joy. (And it was a long car ride home.) It was a real thing, a thing that other people had, I wasn’t crazy, I wasn’t completely alone!

I made myself carsick reading his notes over and over again and researching everything on my phone. He advised me to join an online support group and find other girls with the same condition. (That’s right - GIRLS. More on this buffoonery later.) I immediately found a support group in the car and learned what a “spoonie” was. Spoiler alert: I was a spoonie. I had so many new terms to learn, bodily functions to understand, and treatments to research, but I imagine I was so overwhelmed that I just went home and immediately slept.

That day, I found out I had been suffering from something called dysautonomia, which is a dysfunction of the autonomic nervous system (ANS) that primarily affects teenage girls. It is not one single condition, rather an umbrella term for a group of medical conditions. For example, my “highly sensitive vagus nerve,” my neurocardiogenic syncope, low blood pressure, temperature fluctuations, and more were all part of my dysautonomia. 

This makes sense when you realize that the ANS is in charge of the involuntary and/or unconscious things the body does, like heart rate, breathing, blood pressure, temperature, digestion, when one nipple gets hard and not the other… but I digress.

The thing about dysautonomia is that no one really knows where it comes from. Often, it can be traced to an inciting event such as trauma, surgery, or a virus, and I just read it can happen to adolescents after a growth spurt. Sometimes, it just remains a mystery. For years I would wonder if that weird episode I had in the car with the sharp pain in my head really was a seizure and if that triggered my dysautonomia.

When I got accepted to the support group (on Facebook), I learned that there were thousands of others who were dealing with the exact same things I was at the exact same point in their lives. These girls fainted just like I did, lost all their friends like I did, struggled with school like I did, struggled to be taken seriously like I did, and had doctors tell them it was all because of anxiety like I did. They had all sorts of conditions, like POTS (postural orthostatic tachycardia syndrome), EDS (Ehler-Danlos syndrome), IBS (irritable bowel syndrome), fibromyalgia, ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), MCAS (mast cell activation syndrome), and far more, but these were the most common that I can remember off the top of my head.

Some had it way more severe than others. So while I was not exactly having a great time, I learned to be very thankful that I did not need a feeding tube, infusions, or multiple surgeries like many of the friends I made. I did not need to be hospitalized on a regular basis and never casually dislocated a rib like some of my hypermobile EDS ladies. Maybe fainting off the toilet isn’t so bad, right? Right? 

From my cardiologist, I was referred to the Neurological Associates of Washington in Kirkland. To a doctor that specializes in dysautonomia, and acknowledges that it exists!  It was a bit of a drive, but we were willing to go anywhere by that point. I had my consultation, but, get this, they STILL did not take me seriously. I was still just a hYsTeRiCaL TeEnAgE gIrL. I could be making it all up for attention. I did get a good grasp of what orthostatic hypotension really was, which was cool, but they wouldn’t accept me into their clinic for treatment until I did autonomic testing. I had to prove my worth as a suffering patient through yet another traumatizing incident. Yes, luckily I failed the autonomic testing with flying colors! 

The truth is, not even grown-ass women are taken seriously in medicine, much less their moody teenage counterparts. It is well-documented that dysautonomia in particular is a very frustrating source of medical sexism. And trust me, I would know. That was something the ENTIRE group could relate to. I was told it was my anxiety and that it was all in my head so many times that I started to wonder if I really was crazy (now that, my friends, is the literal definition of medical gaslighting, whether the doctors meant to do so or not). It was well established in my medical record that I have had a lifelong struggle with mental health and needed to be medicated for it, and that was all that doctors seemed to consider when they opened my file.

I recently read that with long COVID now presenting neurological symptoms such as brain fog, men are sent to neurologists way quicker, while women are still being told that it’s all in their head and initially sent to psychiatry. (I don't have the sources, but that sounds about right to me.) 

I just got the audiobook Doing Harm: The Truth About How Bad Medicine and Lazy Science Leaves Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery. And oh boy, am I excited to crack that baby open. Katie recently sent me Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn, which immediately got added to my now 2,424 book long “to read” list on Goodreads. If you are a woman experiencing an invisible illness, chances are, you will be dismissed again and again. There are still people who don’t believe some of these conditions are real!

Although it was a years-long uphill battle, I was finally in the place I needed to be. I learned more about my blood pressure and why I felt so dizzy when I stood up. This was called orthostatic hypotension, or postural hypotension. I have explained some of this in previous posts, but I didn’t know what it really was until this point in my life. I get icked out thinking about it too much, so here is a very special excerpt copied and pasted for you straight from a random Mayo Clinic page:

“When standing from a sitting or lying position, gravity causes blood to collect in the legs and belly. Blood pressure drops because there's less blood flowing back to the heart.

Usually, special cells (baroreceptors) near the heart and neck arteries sense this lower blood pressure. The baroreceptors send signals to the brain. This tells the heart to beat faster and pump more blood, which evens out blood pressure. These cells also narrow the blood vessels and increase blood pressure.”

Except in my body that don’t happen, and that’s the story. Let’s go back to a condition I mentioned called POTS - postural orthostatic tachycardia syndrome. Alright, I have the postural orthostatic part, and it certainly FEELS like a syndrome, but what about the tachycardia? I met a lot of girls with POTS, and we seemed to have every symptom in common. I could relate to everything the group collectively bemoaned, and POTS was by far the most common condition of all. Except, my heart rate doesn’t rise, it drops. So I get to share the suffering, but not the title that sounds like it could be an alternative cooking show. 

I remember doing an at-home test for POTS on the dining room floor with my mom, a timer, and a blood pressure cuff on hand. I laid down flat for a certain amount of time, and we took my blood pressure and heart rate. Then I stood up for a certain amount of time and took my blood pressure and heart rate again.

I remember having my earbuds in, and when it was time to stand up, I played a fun, upbeat hype song because I really wanted my heart rate to increase, you know, like the cool kids. I was spending every moment actively willing my heart to race as my blood pressure dropped.

(That is definitely cheating, and also did not work. Maybe it would have been effective if my heart rate didn’t actively do the opposite of that…maybe I actually got it up to a normal-person heart rate! But still, I definitely do not have POTS.)  

At my consultation, my autonomic testing was scheduled for a month out. I had to wait because I was required to be off all medications during testing. At this point I had been on a high dose of sertraline/zoloft for years, a medication that took time to get out of my system, and that I needed to be slowly weaned off of. I also unfortunately needed to stop taking birth control pills, which I knew spelled my impending doom, but I didn’t have much of a choice in the matter. (By the way, I just made a note for myself that I need to make an entire post about sertraline. Literally. Don’t even get me started on this one tonight.) 

Fortunately, for your reading entertainment and my own drama factor, the testing was so eventful and chaotic that it deserves its very own post. Stay tuned for more convulsing, finally getting into the clinic, and one very purple finger!

Autonomically,

Isabelle