Thursday, May 22, 2014

The Still Not Ending Story

It's been a year now since DOB first started having what we have come to term "episodes": incidents where his body, to some greater or lesser degree, just stops working. Sometimes he can't move, sometimes he jerks uncontrollably, sometimes he cannot speak or his speech is slurred or stuttery.

We spent many months making the rounds of doctors, first the local ones, then the big university clinic. He went through all the tests, MRI, EEG. They eliminated any possible medical cause. His brain proved to be "perfectly healthy and juicy," a description by a neurologist which gave us secret doubts about his predilections.

So the stumped experts sent us to start looking at psychosomatic causes. We got a possible diagnosis, although even the disorder is not that well-established. It's called conversion disorder, and the layman's description is simply that his body is fed up with his propensity for ignoring exhaustion and pushing on through and just stops cooperating. Sometimes good character costs too much.

That's been our treatment focus for the past several months. He's learned to relax into the episodes, take life easier, rest. The episodes diminished--and except under exceptionally stressful circumstance, they only happened at night, causing little disruption unless he got frozen into an uncomfortable position. (I had to learn to wake up from his grunts and give him a karate chop to break him loose.) The doctor had him taking medication to help him relax even better and it seemed to be working. We also moved to another house so that he could get around the house without assistance, diminishing some of the constant stress. He was back to driving and working pretty normal hours.

After all that, this was supposed to be a post of progress. He had gone two weeks without even a nighttime episode. Well, there was one, but it seemed to be tied to an unexpectedly long day at work, and everything was making sense and things were, if not quite better yet, at least on the cusp of getting better.

Until this past weekend. Sunday was the annual church business meeting, and we were all sitting around finishing up the potluck and watching a video on the year's activities. I heard Duchess call out for me and turned around to see DOB falling like a tree. I got him into a more comfortable position and watched, but he was out cold, though his eyes were wide open. Somebody called the paramedics, but by the time they arrived ten minutes later DOB was coming around and all his vitals were normal, although he was still unable to move for another 30 minutes or so. His memory had stopped a few moments before he had tried to get out of his chair. (This put an end to the church business meeting, unfortunately so early in the proceedings that we'll just have to have it over.)

It was kind of like the preexisting episodes, but different. He'd never gone unconscious before. (Sometimes he had been unresponsive, but I could see in his eyes that he was still conscious and he would remember everything afterward.) He'd always had enough warning that he could get himself to a safe place. And there was a pattern--or we thought there was--that this just didn't fit.

We hoped maybe the psychiatrist would have answers at his next appointment, which was Wednesday. Maybe it was just a medication reaction. (In the meantime he had a couple more, though he didn't pass out because he stayed seated. According to his paralegal, who was driving him through one of them, it was like he got suddenly, totally, and very crankily drunk. And then got over it and to the hangover stage, all within twenty minutes.)

Unfortunately, the psychiatrist has no idea. It doesn't sound like anything connected to the medication or within the scope of the current diagnosis. She said it was time to go back to the neurologists and tell them to try harder. Maybe we'll have to do the stay in the hospital hooked up to gizmos until something happens. (Which could be a very long time--nothing exciting has happened since Monday night now.) In the meantime, he's supposed to reduce work hours significantly and refrain from driving entirely.

And in between, everything is fine. He argues cases and negotiates cleverly. He plays pickleball and looks good doing it. He hugs the kids and designs gaming worlds.

And then suddenly it's not OK, and now we don't know why any more and we already exhausted all the questions there were to ask.

I want this story to make sense, but it doesn't.


mamatigerj said...

This must be quite an emotional strain. I hope you get some answers soon. I will be praying for you.

Not Lucy said...

Let me know if I can do anything (as long as I don't have to walk much). I have lots of grass and a new puppy...

Catie said...

I'll pray for you as well. Sounds awful and so strange! :( Sorry!

Wendy said...

I'm so sorry, not knowing is so hard!
Praying for you!