A health update

You may have heard about my health issues, whether on social media or Overtired, so I thought I’d offer an update on where things are at. I’m not soliciting for medical advice, I’ve received enough of that. I’m just kind of documenting my current state.

You can hear me talk a bit more about all of this on Overtired #423, if you like.

About two months ago I began feeling lightheaded. Constantly. Most of the time it just felt like a nice buzz — like a big yawn. Sometimes it felt like motion sickness. But it was disconcerting either way. Then a month ago I started passing out. Always within 3 minutes of standing up after sitting or lying down (orthostatic changes).

I went to the doctor before the syncope started. My primary care provider ran a dozen tests and declared me fine, blaming my lightheadedness on my psych meds. My psychiatrist didn’t believe that my symptoms could be explained by any of my current meds. I did try going off some of them, but to disastrous results and with no effect on the symptoms I was experiencing.

I went to the ER three times after losing consciousness, and again, all tests were normal, aside from a minor concussion one time.

Returning to primary care, my doctor was pretty sure it must be my heart or circulation issues. Now that I’d been passing out, he was taking me a little more seriously. Not as seriously as I would have liked, but he scheduled me for an echocardiogram. All of my EKGs had come back normal, and I didn’t expect much from the echo. I was correct. Everything looked great. And there I was, scared to take the stairs down to my office for fear of losing consciousness and breaking my neck.

Meanwhile my psychiatrist was convinced it was neurological. I got scheduled for an MRI. I just had that a couple of days ago and am still waiting to hear my doctor’s interpretation, but my layman’s read of the results is that it’s a bunch of “minimal this” and “unremarkable that.”

After some unsolicited medical advice and a lot of research by my partner, Elle, we found some information on dysautonomia. That’s an umbrella term for a bunch of disorders and syndromes like Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, and POTS. Various combinations of these — which are often comorbid — could explain my symptoms, both present and past. GI issues, sleep issues, plus the lightheadness and syncope. And unexplained pain that I’d always wondered if everybody lived with and just didn’t talk about. I have a constant headache, my skin burns, and my bones ache. I remember back to Middle School wondering if I could project the way I feel onto someone else, would they scream?

While talking to a therapist who also has Ehlers-Danlos and POTS, they asked me if I could touch my thumb to the wrist on the same hand. “Sure,” I said, thinking that was a normal thing. Turns out that’s called hypermobility and is an indicator of a specific type of Ehlers-Danlos. So now I had something visible with which I could go to my doctor, instead of a bunch of invisible symptoms that weren’t taken seriously.

Now I’m waiting for the MRI results, which I expect to be normal, at which point I can insist that I be referred for genetic testing at Mayo. That would allow me to confirm some of my suspicions. I’ll also need allergen and hematology specialists. It’s going to be a long road. But the fact that I have a good idea what’s going on already should make it a shorter process than some of my friends who experienced years-long investigations into invisible symptoms and pains.

So that’s where things are at. I suspect dysautonomia, and everything about it fits perfectly. It’s more than a suspicion at this point, but I need a diagnosis. Once I have a diagnosis, I’ll be able to get appropriate treatment for various symptoms and hopefully get back to a somewhat normal life. This condition is permanent, and has been present for my whole life, I just didn’t have all the symptoms I have now to allow me to put the pieces together. Well, Elle and I — I wouldn’t have figured any of this out without them.

I don’t believe in prayers, but I appreciate you thinking about me as I deal with this. I fervently hope this doesn’t affect my ability to work and maintain good income and health insurance. I live in a capitalist society where my value is entirely dependent on my productivity, and there’s no safety net to speak of. I would be eligible for some disability support with a diagnosis, but that’s not going to help maintain my current lifestyle. It’s scary, but I’ll figure it out, and what will be will be.