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.

Wednesday, March 22, 2006


It's not enough that I had trouble sleeping last night. My neck spasms were worse this morning too. I barely notice the extra Baclofen, so I'll be taking it a little later each day until I'm taking it a hour or so before I go to work. Since it doesn't make me drowzy, there should be no problem, and it may help a little eventually. Even a little positive effect would be nice.

So far, I slept pretty well last Tuesday through Friday, badly Sat & Sun, better Mon, and badly last night. I wish I knew why my sleep hasn't been consistant. I take my meds exactly as prescribed, and I don't drink any caffeine. It's intensely frustrating. Maybe my doctor will have some idea when I see him next month.

Tuesday, March 21, 2006

More meds

The extra Tizanidine is working, and I'm actually sleeping most of the night now! Amazing! It's such a nice change from being awake most of the night.

I've started taking one Baclofen in the morning. It's making a small difference, and it's not making me very drowzy either. That's good news, because I may be able to take it before I go to work.

I'm still waiting to hear if the insurance company will authorise the Botox. If they don't do it this time, maybe the Baclofen will be enough. I'm still able to work, but my dystonia gets pretty bad near the end of my shift. We haven't been really busy lately, so there'd no problem getting my work done, but with Easter comming, business will pick up. Hope I'll be able to keep up!

Wednesday, March 15, 2006

After the appointment

My doctor said he's going to ask for authorization for more Botox. The right side of my neck is doing pretty good, but the left side is still really tight, which is why I'm a little "off-balance". I'm not counting on the authorization, because it's been less than 4 months since my last shots, but he won't need much. Maybe I'll get lucky.

He also noticed how much worse the deviation is, so he took measurements. That'll probably be helpful in convincing the insurance company to approve his request for more Botox.

Since I've been having so much trouble falling asleep and staying asleep, he recommended that I increase my dosage of Tizanidine. I was taking 20 mg of Baclofen before bedtime and 8 mg of Tizanidine at bedtime, but now it's up to 12 mg of Tizanidine. It didn't make much difference last night, but that's probably because I changed most of the earrings for my cartilage piercings, and my ears were kinda sore. They still are, so it'll probably be a few days before I notice much difference in my sleep.

My doctor said I could also start experimenting with higher doses of Baclofen, as long as it doesn't make me too sleepy. It's nice to know he trusts me not to abuse my meds, but I'm not going to take more of it until I see how the extra Tizanidine works out. Of course I'll tell him when I start taking more, but the problem is that I don't know how long 10 mg of Baclofen lasts. I can always ask the pharmasist, since Walgreens is less than half a block down the street.

As messed up as my neck is now, I'm still fairly pleased, because it's not anywhere near as painful as it was before treatment, and I can still work. I don't get many hours, but I still have a job! :-)

Sunday, March 12, 2006

Getting worse, part 2

The weather is actually cold here, which isn't doing my dystonia any good. Since yesterday, my neck has been turning harder and tighter, and I sometimes get a burning sensation along the back of my neck. I'm glad I have an doctor appointment this Tuesday. And I'm glad I'm off work until Friday!

I got some paperwork from the Rehab company, and there were some errors in it (due to the typist, not the Rehab agent), so they fixed it (sort of) and I signed it & sent it back. It says I have "no barriers" to getting vocational rehab and another job if I need one, even though I told them on 2 separate occasions that I can't drive. Oh well. It probably won't be an issue anyway.

I was just thinking about how lucky I am that I can knit and crochet. I no longer have a social life, but I'm never bored because I have plenty of interesting projects to occupy my time.

Friday, March 10, 2006

Getting worse

My neck has gotten noticably worse over the last couple of days. It's twisted around at a worse angle, it's getting more painful more often, and when I have to walk around without my hand at the side of my neck, my neck pops as I walk (the dystonia is affecting the degenerative disk disease in my neck). Not a pleasant sensation. It's getting a little harder to work, but we haven't been too busy lately so I can still get my job done. I don't know how much longer I'll be able to keep up while slowing down.

I'll see my doctor this Tuesday, and I'll have to remember to ask him about the possibility of taking Baclofen during the day, instead of just at night, since I get a little pain and spasm relief with it. I still have trouble falling asleep and staying asleep, but any relief is better than no relief.

Oh, I sent in my renewal for my driver's license, and they ask if you have a condition that prevents you from driving safely. I checked "yes" and briefly explained my dystonia. Today I got a driver's license! I was surprised. Lots of "normal, healthy" people can't drive worth a damn, but I can't drive and I have a license. Go figure.

Saturday, March 04, 2006

Laundry day

We live in a mobile home park, and the laundry room is an easy walk from our coach. Ours is one of the closest to the laundry room. Lucky for me! The bad thing is that it's only open from 7am to 7pm. Never at night.

All I did was take 2 loads at once to the laundry room, then go back for the detergent (I can't carry both at once), and my neck got worse immediately. It's twisted to the right, and leaning down to the left, as far as it'll go. I know not to do more than one load at a time, but I have a lot to do, and my husband works during the day today and tomorrow. I'll probably do 2 loads tomorrow too. At the same time. I'm tired of doing it one load at a time, since it takes longer that way. I'll just have to suffer with the consequences. Good thing I have lots of aspirin and Ben-Gay.

Funny how even the small, common things are affected by dystonia. And how dystonia is affected by even the small, common things.

And I'm back to not sleeping well at night. The "good night's sleep" phase only lasted about 4 nights.