Monday, July 30, 2012

I'm officially obsessed with my HFS.

I'm going to see my neurologist for a follow-up appointment tomorrow with regard to the hemifacial spasm diagnosis that he gave me the last time I went to see him.

The medicine he prescribed did pretty much nothing to help. It did a few other things (made me quite sleepy when I took it after drinking wine; gave me an antsy feeling in my ankles when I first started taking it; gave me headaches), but it never really helped at all with the twitching.

And at this point, I've developed this fun new twitch in my right hand. It happens when I'm working out, it happens when I'm typing, it happens when I'm asleep (which I'm made aware of when I wake up and my hand is in a nifty spasm episode that makes my forefinger and thumb stick together in a claw-like formation)...so it's pretty much all the time, and it's driving me to madness.

Actually, as of today, I'm feeling twitchy all fucking over my body. WOO! It's like I have a slight electric current running through my veins all the damned time.

Another thing that I've noticed, that I'm not sure if it's related at all, but I've started to cock my head a lot. Like, I'll be watching a movie, and suddenly realize that I have my head cocked to the right shoulder. So I correct it. And 5 minutes later, it's cocked the other way.

This also happens in meetings; when I'm laying by the pool; or when I'm hanging out at the bar with Leo.

And then there are moments like right now. Small moments that come and go, when nothing is twitching; there is no spasm; everything feels normal for a fleeting 3 or 4 minutes.

Yep! There goes the eye. AUGH!!!!!

I've been doing a lot of research about this over the last week. I've been getting very sad and teary when I think about it much, but I can't stop looking into options. I saw a commercial over the weekend for a neurology institute that's here in Kansas City (at St. Luke's), and looked that up today. I thought it was a sign that the commercial came on and I saw it for the first time when I'm going through such a hard time with this whole issue...but I think they focus more on strokes at the institute. The website didn't mention hemifacial spasms at all.

So I looked into other links. And found a video of this lovely older woman who had to have the microvascular decompression surgery (it's one of the treatments for HFS), and was talking about her experience with HFS and how much she loved her doctor for being able to help her. He's a dude at USC; I wrote his name down; I am considering contacting his office if my neurologist doesn't help me find a solution to all of this crap soon.

I'm so afraid that no one will be able to help me with this anytime soon. And it's so annoying, y'all. So, so fucking obnoxious to constantly feel yourself twitch twitch twitch all the damned livelong day (and NIGHT!). Think still thoughts for me and my face, would ya? I'll let you know what happens with the neurologist after I meet with him in the morning tomorrow...

2 comments:

faithstwin said...

Hopefully that story I told you about tonight will lead to some positive changes for this situation for you. One way or another, we'll figure it out and get it taken care of. Have faith! (heh...)

Auntie Pam said...

You are way too young for crap like that. I have my fingers crossed and wish you well with your appointment tomorrow. Get the answers you want and need; walk in with a list. I understand your fear; make sure your doctor does, too.