Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Tuesday, November 28, 2006

More insomnia

My insomnia came back Saturday. The extra Baclofen I started taking the day before Thanksgiving just helped a little. The only thing it does is help with flexibility and excessive stiffness. It's certainly better than nothing, but I need to be able to stay asleep at night. Because of all the stress I'm under now (and probably will be for some time), I don't think it'll ever happen.

Thursday, November 23, 2006

Appointment update, and possible work issues

My Dr appointment yesterday went well, as they tend to do when they're just updates. I told him how helpful the extra Baclofen was, and he told me to keep taking it that way, and gave me a new prescription. I'm so glad the Baclofen is helping, and that it doesn't make me too drowsy to work - unless I take my "3 tablets 2 hours before bedtime" while still at work. Sometimes I have to, because I work nights, I'll be staying later and later during the holidays, and I don't want to stay up until 2am or 3am - especially if I get a "day job"! I'm still waiting to hear from 4 places, but only 2 seem promising.

Pain-wise I hope I still do about as good as I have been, since late December will mark the end of the 4th month since I had my shots. They just barely lasted 4 months last time, and I'll be working a lot harder now, so I'm a little concerned.

I'm also concerned about the worsening deviation, since the Baclofen does nothing for it (although it helps with flexibility). I hate being stared at - especially at work - and it'll just get worse since there'll be more customers there to stare at me. What I do when I catch them is stare back, then politely say "Can I help you?" That usually works. When it doesn't (that rarely happens), I just keep staring for a few seconds as I walk away to continue my work. They don't seem to like it, but what can they say besides "She looked at me when she asked if she could help me!"? Guess their parents didn't teach them that it's not nice to stare.

My next appointment is near Xmas, and by then I'll probably be ready for more shots if the pain is bad enough. If it's just a worsening deviation problem, I won't get them until the pain gets bad enough. If I'm lucky, the worsening deviation won't affect my getting extra hours. It hasn't affected my work, and I don't expect it to. We'll see.

Tuesday, November 21, 2006

Temporarily much worse

I was feeling pretty good for a while, then on Nov 10, I woke up to excruciating neck pain. Maybe I just slept funny. I tried to do my neck exercises more carefully, but it just made the pain worse. It has been slowly getting better, but my flexibility is reduced and the deviation is getting much worse.

Nov 12 I agreed to work extra hours, so for the first - and only - time, I took an extra Baclofen during the day. One in the morning, one in the afternoon, and one in the early evening. Not only did I feel pretty good that night, I slept much better than usual. What a delightful surprise!

I have a Dr appointment tomorrow morning, and I'm going to ask him if I can take an extra daytime Baclofen at least through December, since I'll be putting in some long, hard hours because of the holidays. I hope he agrees, because with it, I may be able to go a little longer between Botox shots. That'll make the insurance company happy! *lol*