Spasmodic Torticollis and Botox® treatments

In December of 2010, I went to see a neurologist regarding pain and abnormal movement of my neck. My head had become more and more tilted to the right, and up, and tremors were noted by several people, including my psychiatrist. He had gone to a symposium on movement disorders, and thought that my problem might be in that category.

Sure enough, the neurologist concurred that I had spasmodic torticollis. Other names are

  • torticollis
  • spasmodic wryneck
  • focal dystoniaidiopathic cervical dystonia

It’s funny, I had known a man in AA for several years, beginning in 1986, who had a really bad case of it. Way back when, he and I had wondered if I might be at the beginning stages of it.

Web MD describes it as follows:

Cervical dystonia, also known as spasmodic torticollis, is a rare neurological disorder characterized by involuntary muscle contractions in the neck that cause abnormal movements and postures of the neck and head. In some cases, these abnormal contractions may be sustained or continuous; in others, they may be present as spasms that can resemble tremor. The severity of cervical dystonia can vary, but the disorder can cause significant pain and discomfort as well as difficulty due to the abnormal postures.

One unrelated aspect of my torticollis is tremor. I was diagnosed years ago with an essential, or familial, tremor, which basically means it has no cause, and tends to run in families. Mine, as well as my brother Jeff’s, started in the hands. My grandmother had it in her head/neck. I was given Inderal (a heart medication) with some effect. Inderal is also given to some performers as a way to deal with stage fright. Among other things, it slows the heart rate and thus some of the symptoms one might get with “a case of nerves.” In my case, this medication also helps to control the tremor in my head/neck that would aggravate the torticollis.

Another aspect is the contracture, which essentially means that a limb is in a locked, or preferred, position. Older folks who are bedridden can get a contracture when their limbs are not exercised and the muscle almost permanently contracts. You will sometimes see an older person’s hands or feet curled up and locked tight.

Unfortunately this can also cause pain, and when you have tremor on top of it, the pain can be intense. My neurologist described it as my neck muscles performing 100 sit-ups a minute. You can guess that they would become fatigued and cramped, and that’s exactly what happens to me. I do take tylenol and/or ibuprofen for this. The disorder is progressive so at some point I may be forced to take stronger medication for it, but with my history of alcoholism it’s not a great idea to mess with drugs that have addictive properties.

One of the treatments that I have for my torticollis is Botox® injections every three months. According to SpasmodicTorticollis.org:

,BOTOX® …  is a therapeutic muscle-relaxing agent that helps reduce the uncontrollable muscular contractions and associated pain that characterize cervical dystonia. It belongs to a class of drugs called neurotoxins. [It] inhibits the nerve impulses that trigger muscle hyperactivity. By relaxing hyperactive neck and shoulder muscles, BOTOX® injection can improve head position and reduce pain in patients with cervical dystonia.

Basically, this means that theoretically the medication causes my head to resume a normal position, and relieves pain. I do have to say that there is much improvement, but over time the Botox® has become less effective. Recently, the doctor increased the dosage, and it has gotten a little better.

The shots are far from pleasant. Let me be clear: I am seeking pity here, lol. The doctor hooks up some electrodes to see what activity is in which muscle, so that he will know where to place the medication. There are approximately 12 injections into muscles that are already painful. I do take a “happy pill” (Xanax) prior to the procedure, but too much of it affects the doctor’s ability to see where to place the injections. I have sat in that chair with my leg involuntarily kicking outward, and tears coming to my eyes. I find that if I ask the doctor to distract me in conversation I have much less discomfort. The procedure always lasts about five minutes more than I can stand. But I’m a tough girl, and it is definitely worth having done.

One other thing about ST that bothers me is that it has affected my appearance. I seem to be looking up at the ceiling and to the right much of the time, and if I am speaking to someone taller than I (I am 4’11” so…) I notice that the muscles get tighter and more painful. If I am anxious, or if my blood sugar is low, I can have more tremor, contracture, and pain. I am mortified when I watch videos and see photographs of myself sometimes. But it is not horrible 24/7. I am able to distract myself for periods of time and forget that I have pain, or this abnormal posturing. But then I see a picture of myself, or someone asks me how my neck is doing.

I am careful not to aggravate my torticollis by hyperextending my neck for long periods of time. For example, when I clean the bathrooms at church, bending and tilting my head for a period of time, it will aggravate the pain. When I am in a social situation where I am more anxious, plus perhaps looking up at tall folks, I have to rest for a day afterward. I have difficulty driving sometimes. As I have written, I have other problems that also prohibit my functioning, so I try to function as best I can. I am frustrated on many levels that I used to be able to work as an ICU nurse, and now I can’t even work as a cashier, partly because of my mental illness, but also due to the torticollis. I have to be careful not to aggravate it.

If you have questions about this post, feel free to ask me.  🙂

Drawing courtesy of http://www.spasmodictorticollis.org/index.cfm?pid=76&pageTitle=Understanding-Botox-

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16 thoughts on “Spasmodic Torticollis and Botox® treatments

  1. kbailey374 Post author

    It’s as controlled as it’s gonna be I guess. The Botox does eventually stop working at which time they give you pain meds, and I think there is a surgery you can have for it (but who wants an operation on your brain? Wait… hm…)

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  2. stephieopolis

    You have my pity. lol
    I understand what it’s like because I have something similar happening, but only with a big toe. Inderal helped with my own issue and essential tremor, but I also get what it’s like to have something effect your appearance, especially as a woman. Even when your a tough cookie who is pretty secure in your worth, our society’s obsession with appearance can be daunting. I am always instantly horrified when I find new patches of scleroderma. Have to talk myself down. Nobody threw acid on me, a monkey didn’t rip off my face. Still, living with it requires daily courage. Keep truckin, chica. Love & Prayers!😉

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  3. painkills2

    I had a Botox injection for TMJ (jaw) pain, and I had to be sedated before the procedure (which also included other injections). I cannot imagine having those injections, especially in such painful areas, if I was awake. Dude, you are one tough cookie. (And no, the Botox didn’t help, but I’m sure glad it helped you.)

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    1. kbailey374 Post author

      There is a tool in DBT, I forget what the tool is called, but basically you try to forget, or not anticipate, a future unpleasant event. So, when I think of the future procedure, I just put it from my mind. Then, that day that I’m supposed to have it, I just about FREAK OUT and want to run!!! oh my gosh! I would love to take the whole BOTTLE of happy pills … or cancel the appt. But I don’t think I could function w/o the shots. 😦 Sorry yours didn’t help! What do you do for it now?

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      1. painkills2

        I moved to New Mexico to join this state’s Medical Cannabis Program, but couldn’t afford to renew. So, right now, it’s lots of aspirin (and desserts). I have a home pain management program, but I can’t be very active without something to help with the constant pain (and everything that goes with it).

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          1. painkills2

            It costs two doctor appointments (one with a specialist) and for updated tests (as mine are older than 5 years). I had surgery way back in the 90s, so many of my MRIs, etc. are kinda old. As if an updated test proves that I’m still in pain… Anyway, I wouldn’t pay for updated MRIs unless I was again contemplating surgery. (No, never again.)

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              1. painkills2

                Funny, I didn’t need an MRI to get a prescription for pain meds, but for the Medical Cannabis Program, I have to pay for “objective” proof of “severe chronic pain.”

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  4. Pingback: My Jesus Addiction | After Midnight: A Christian Bipolar

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