Good morning everyone, and thank you for having me here.
While I hate that a site like this even needs to exist — filled with people who can relate to the same struggles — I’m grateful not to feel so alone.
My name is Mike. I’m a farmer and rancher, and also a full-time IT Director. Over the past four years, I’ve had to sell most of my livestock and a lot of my land. My animals deserved better care than I could give with how sick I’ve become, and the medical bills have been overwhelming. This is the start of my journey to figure out what’s happening to me.
For background, my only past medical history was Chiari malformation with two syringomyelia, which I had decompression surgery for in 2017 or 2018. I lived a mostly normal life afterward — working full-time, flying planes, farming — managing some breakthrough pain with hydrocodone when necessary.
That all changed after I received the COVID vaccine while working in the medical field. Since then, every COVID infection I’ve had has triggered severe, debilitating symptoms. Doctors, unfortunately, have been largely useless throughout this process. I’ve had to personally request nearly every single test that has actually found something abnormal.
Since then, I’ve been diagnosed with POTS or some form of dysautonomia, ME/CFS, MCAS or histamine intolerance, CCI (cranial cervical instability), and there’s suspicion of some form of EDS (awaiting genetic testing). We’ve also found reactivated mono, and a tickborne disease, anaplasmosis. I recently requested my own CTA scan and personally measured my styloid processes — they appear elongated bilaterally. I’m not a doctor, but I was an EMT and a pilot before all of this, so I know enough to advocate for myself. Sadly, those careers are now part of my past too.
I’m not sure why the medical field has changed so drastically over the last 4-6 years. COVID definitely played a major role, but the sheer amount of dismissiveness and negligence from healthcare providers is staggering.
No, I’m not a hypochondriac. No, it’s not “just anxiety.” Although after years of this, waking up feeling like you’re having a heart attack or that something is blocking your airway absolutely will cause anxiety. Anyone would feel the same.
For anyone interested, here are my images and measurements — I’d appreciate any insights:
CTA Images
Lately, life has been hell. I’m writing this after only two and a half hours of sleep. Last night, my neck was burning, I couldn’t get comfortable, the pain was intense, and I kept jolting awake. It felt like something was stabbing the base of my tongue from the inside — a new and terrifying symptom. The burning neck pain, tongue pressure, 24/7 dizziness (which used to improve when lying down but now persists even then) — it’s all crushing.
I’m also being evaluated for a tethered cord and possible CSF leak.
My neurologist states Eagle’s Syndrome is controversial and outside his expertise. Thankfully, he’s willing to refer me to a university center or even Mayo Clinic. I’ve also requested a referral to Dr. Hepworth, and I’m praying I can get in.
I’m only 29. This all started when I was 25.
I recently got married to an incredible woman who deserves the absolute world — far more than I’m currently able to give her. Watching her stand by me through this makes me both grateful and heartbroken.
I’ve also developed significant medical anxiety. I had never reacted to food or medications before all this. Now I’m down 40 pounds — 30 of those pounds lost in under two months — because my body struggles to absorb nutrients, and I can only tolerate 6–8 foods without reacting.
I’m tired.
I’m overwhelmed.
But somehow… we push forward.
Thank you all for reading, and I apologize for the spastic writing haha, I’m running on little sleep and I’m really out of it. I’m glad to be among people who understand.
