Hey everyone. I’ve lurked here forever, and I’m finally posting because I’m at that point where I’m exhausted, angry, and honestly just trying to survive this with my sanity intact.

I’ve been dealing with this for about four years, starting after COVID. I know a lot of people in the Long COVID / dysautonomia world get boxed into the “POTS” lane right away, but my situation doesn’t really fit that, and that’s been a huge part of the problem. I don’t have classic orthostatic intolerance as my main issue. My “signature” problem is what I can only describe as autonomic storms—sudden, episodic, relapse/remitting events that hit out of nowhere and feel like my nervous system is flipping a table.

What these episodes look like for me

They’re not subtle. They’re terrifying.

Paroxysmal blood pressure surges (like my body suddenly decides it’s in a life-or-death emergency)

Chest pressure / “heart attack-ish” sensations

Stroke/TIA-like neuro symptoms that come and go (visual “off,” brain fog/word-finding issues, weird neurologic symptoms that don’t neatly map onto anxiety)

Intermittent mydriasis (yep—one/both pupils deciding to go rogue)

Watery eyes / nasal symptoms (autonomic stuff is weird)

Cold/discolored hands (Raynaud’s-like)

Everything waxes and wanes. I can be “fine” and then suddenly I’m not.

Triggers? Certain meds have triggered it. One medication (atomoxetine) kicked off a hypertensive crisis. I’ve had episodes that felt so severe it’s hard to explain to people who haven’t experienced “your body is malfunctioning” in real time.

And the worst part is… once you’ve had enough of these, you start living like a hostage: “How close am I to the next one? What if the next one is the one that doesn’t resolve?”

The testing that did show something: Autonomic neuropathy

After a lot of bouncing around, I did get objective testing consistent with autonomic neuropathy. My QSART was abnormal (non-length dependent pattern). So it’s not like this is just vibes. Something is clearly wrong with autonomic function.

I also have a positive ANA (1:320) with no clear rheumatic disease diagnosis (so far). Family history is loaded with autoimmune disease, which matters because apparently my body didn’t get the memo that we’re supposed to be chill.

The medical carousel: “normal” tests and the constant shrug

I’ve seen multiple cardiologists, rheumatologists, endocrinology, and autonomic specialists. I’ve had the usual workups (imaging,  echos, holter, stress test etc.) that so often come back “normal” while you feel like you’re actively dying.

And it’s the same cycle every time:

1. I show up with symptoms that are objectively intense.

2. They rule out the big obvious emergencies (which is good, obviously).

3. Then it becomes, “Well… we don’t really know what to do with this.”

Where I finally snapped: GPCR autoantibodies (CellTrend) and doing it myself

Here’s where people will either nod because they’ve been through it, or roll their eyes because it sounds “too niche.” But I’m posting it anyway.

At a certain point, I realized: if I wait for the system to be curious, I may be waiting forever. I started digging into the research around autoimmune dysautonomia and GPCR autoantibodies—the kind of antibodies that can bind to receptors involved in autonomic control (adrenergic receptors, muscarinic receptors, angiotensin receptor, endothelin receptor, etc.). There’s also emerging discussion in subsets of Long COVID / ME/CFS / dysautonomia about immune-mediated mechanisms involving these pathways. Not necessarily POTS. 

So I paid out of pocket and did CellTrend testing (yes, I know it’s controversial, yes, I know it’s “binding,” yes, I know the clinical world loves to say “unclear significance”). I’m not claiming it’s a perfect answer. But I am saying this:

When you have:

a Long COVID onset/worsening pattern

autonomic neuropathy testing

severe episodic autonomic crises

autoimmune family history + ANA

and multiple GPCR autoantibodies that are highly positive across several receptors

…it is not crazy to say, “This might actually be a meaningful mechanism.”

And what’s been maddening is watching clinicians act like these results are either:

irrelevant, or

“interesting but not actionable,” or

somehow less real than the symptoms that are actively wrecking my life.

I’m not asking anyone to worship the antibodies. I’m asking the medical system to stop treating them like they’re just trivia—especially when the patient’s phenotype screams “autonomic receptor dysfunction.”

“But do you have POTS?”

No. And that’s part of why I feel like I’ve fallen into a crack in the floor.

People hear dysautonomia and immediately default to POTS or orthostatic intolerance. I’m not denying those exist (obviously), but my picture is more like paroxysmal hyperadrenergic episodes / hypertensive autonomic crises / autonomic dysreflexia-like storms without a spinal injury. My body isn’t primarily doing the classic “stand up → heart rate goes brrr → faint.” It’s doing “exist quietly → surprise, here’s a full-blown autonomic catastrophe.”

The Cleveland Clinic moment that made me want to scream

This is what pushed me over the edge.

My autonomic specialist at the Cleveland Clinic asked me, straight up:

“What are you hoping to get out of this? What’s your end goal here?”

And I said:

“To stop having these episodes.”

And she looked at me like I’d just asked for her bank account numbers.

I’m not exaggerating. It was that vibe of: “That’s not a realistic request,” or “What do you want me to do with that?”

And I’m sitting there thinking… what exactly is the acceptable goal? To just keep having autonomic storms forever, but with better coping skills?

So I’m switching care

I’m switching from Cleveland Clinic to University Hospitals because I cannot do another year of specialty care where the underlying message is: We don’t know what to do, and your desire to stop suffering is… awkward.

What I’m looking for (and why I’m posting)

If you’ve made it this far, thank you.

I’m posting because I’m trying to find people who have:

Long COVID with hypertensive/autonomic crises, not “textbook POTS”

autonomic neuropathy findings (QSART / sweat testing / small fiber-type features even without the classic burning pain)

GPCR autoantibodies (CellTrend or similar) and whether anyone has had clinicians treat them as more than a curiosity

advice on how to communicate this phenotype without getting dismissed as “anxious” or “too online”

ideas for what specialties actually get this (neuroimmunology? autonomic neurology? someone who understands receptor biology?)

I’m not asking for medical advice as much as I’m asking: Has anyone else lived in this weird in-between category where the symptoms are dramatic, the testing is “kind of positive but not mainstream,” and the doctors act like you’re asking for a miracle when you say you want the episodes to stop?

Because that’s where I’m at.

If you’ve been through something similar, I’d really appreciate hearing what helped—whether it was a specific kind of specialist, a certain framing that got doctors to take it seriously, or even just “yes, this exact flavor of dysautonomia exists and you’re not insane.”

Thanks!

Dysautonomia but not POTS