Since I first got sick in June, I’ve been convinced that if Dr. House were real, he would totally take my case. Not because my illness is that much more interesting than anyone else’s, but because I’ve written 1,730 blog posts in the past six years – posts that surely have clues to help him solve my case – or at least think that he had and repeatedly nearly kill me to find out that his first five hypotheses were wrong.
And, it turns out, I was right. Except that I used my blog to figure it out. Maybe – unless I end up nearly dead.
Shortly after I wrote my post explaining where I was in the diagnosis process, I was indeed diagnosed with Dysautonomia (which basically means that my autonomic nervous system, who pretty much controls everything, is behaving badly) and POTS (meaning that if I stand up, my pulse dramatically goes up, causing confusion and delay.) The Doctor Who Shall Not Be Named did have one redeeming quality – he gave me drugs. He prescribed a beta blocker to help with the pulse issues, and despite the level of confidence I had in him for trying to take it away from me to prescribe something else then changing his mind, I did actually take it anyway. Because I knew it was a common prescription for POTS that could help, and I desperately wanted help.
It solved the pulse problem nearly entirely, which took care of many of the symptoms. But with the landscape of symptoms suddenly much more sparse, the ones left over were easier to spot. I began noticing how intense my head pressure was (as if my brain was swelling and pressing against the sides of my skull), and most interestingly, that I had a tender spot on the top of my head.
I realized that I had been subconsciously avoiding that spot when brushing my hair out of my face, because even that slight of contact was painful. And then I noticed that when it did get touched or mashed or bumped, that it caused an immediate onset of my symptoms – my vision would go blurry, I’d get dizzy, I could feel my pulse in my nose it was so hard, and my head pressure would go through the roof.
I spent some time pondering this sensitive spot and gave it a good while to go away. I assumed I must have hit it and forgotten, since it felt like a bruise. But after four weeks, it had just become more sensitive. And oddly, the sensitivity would fade at times, but be very pronounced at other times – especially on days that I didn’t feel good.
During some point in this self-analysis, I remembered that, months beforehand, I had hit my head in that spot twice in one week. I went looking for it, and sure enough, I’d blogged the incident. I had forgotten how serious the blows had been until I read it.
Regarding the first injury, I wrote…
I was dizzy. I was nauseous. I felt pressure in my ears, eyes, and nose.
The pain mostly subsided by the next day, leaving only temporary spells of aches, pressure, and dizziness for the next four days, so I decided that I must be okay.
And on the second,
I nearly died right there, as Noah watched my dramatic entrance with great excitement.
I stumbled to his bed as the dizziness, pressure, and nausea returned in harmony. After a few minutes, I managed to get him out of the bed, get us both downstairs, and plant myself on the couch until Chris found me and nursed me back to Mostly Dead.
All of Saturday night I worried that I was going to die. Or perhaps fall into a twelve-year coma during the night. I toyed with going to the emergency room, but ER visits never seem to do any good in our family. So I just crossed my fingers and hoped [not] to die.
Although I’d written the blog post in an amused voice, the descriptions had been accurate.
I began to research the connection between Dysautonomia and concussions. I was surprised to find out that not only were they connected, but that the Mayo Clinic was actually using autonomic reflex tests to diagnose concussions, because they were witnessing autonomic dysfunction in all of their concussion patients.
But the autonomic dysfunction usually only appeared during time that the concussion was healing – so that didn’t explain why my symptoms didn’t start (or weren’t noticeable) until four months after my supposed concussion, and why they persisted.
So I kept researching and read several articles about Physiologic Post Concussion Disorder. One article in particular resonated with me, as the description of my head pressure was better than I could conjure up myself:
Ray said he was feeling like someone had just tightened a rubber band around his head.
Yes. That was exactly how I felt. And because it was pressure and not pain, Ibuprofen and Tylenol hadn’t helped at all.
I discussed this with a few of my doctors and they all agreed that my head injuries were a very likely cause of all of my problems. Eventually, I made it into a neurologist’s office, who sent me to get a brain MRI to make sure that nothing was still injured and/or causing problems.
Thankfully, the MRI came back clear, indicating that nothing further was wrong. He said the head sensitivity was likely nerve damage on my scalp. Everyone agrees that my symptoms and Dysautonomia likely originated from the concussion, but that nothing can be done to promote healing. And it may or may not clear up on its own.
My neurologist’s medical advice was, “Gosh. I hope it gets better soon.”
So that’s where I am. Of course it’s frustrating, but in a way, I feel like I can rest now and just learn to live day-to-day. I’ve lost count of my doctor’s appointments over the past five months, during which I feel I have explored every possible option. I’ve had my diagnosis of Dysautonomia confirmed by two different tests, and have had four doctors tell me (some nicer than others) that there’s nothing else to be done except to learn to deal with it.
So deal I will.