Tag Archives: spasmodic torticollis

Whyy oh whine, AKA: I want my mommy!

Why do we cry when we’re angry?

(Because we want to kill something, and we know we can’t?)

And why do I try to accomplish ANYthing on a Monday?

Today on my list I had planned to try – again! – to get some insurance issues taken care of. I say “try” because this is not the first time I have found myself in tears because of these people. But what I am is MAD, not sad. Ok, maybe sad, too…

Every three months I get BOTOX® shots in my neck for my spasmodic torticollis. I found out that I can get reimbursed for the money I paid for the medicine by the BOTOX® folks, but I need certain documentation from the insurance company – which I can’t seem to get. I am also having a problem with how the doctor’s office billed me the first time, so there’s that.

We’re talking times two procedures! So theoretically I have $700. floating in front of my face like a carrot. And I sure could use those dollars to pay on my crredit cards! (I should write about credit cards. Talk about crying!)

So who am I going to bellyache at? The insurance company? The people who manufacture the BOTOX® ?

No. They aren’t going to help.

What I need is a “person.” Someone who can help me navigate the red tape  😦 Is there such a person? Cuz I am not going to get far crying! Urgh! I hate crying! Especially when it comes to having to do adult things!

(There. Ya feel better now?)

(A little)

(Does anyone out there feel sorry for me?)

(A little.)

(Good, do ya think you could send me the $700?)

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My Jesus Addiction

I just read a blog post written by someone who struggles with pain management. See: Do you recognize your addictions? By: All Things Chronic. After I read it, I responded in the comment box provided, and as I thought, I wrote, and I wrote, and I wrote. And … well, you get the gist.

Then I realized that my thoughts would be better expressed in a blog post of my own. Never mind that my comments took up half a page! So, in that endeavor, my post blossomed into the eloquent mess below. And it growed and growed!

Now I’m just kinda thinking out loud and with no animosity, as far as I know. In response to the question, “Do you recognize your addictions?” I would answer that my greatest addiction is to the computer. And editing blog posts. And food. Honestly, food feels like pain relief sometimes. But I will address that in another post. Maybe.

In regard to pain management, that’s another story. I say, hopefully without pride, that I only take Tylenol®, and occasionally Ibuprofen, for relief of pain in my neck. (See my previous blog entry on Spasmodic Torticollis and Botox® treatments). This also helps with the various aches and pains of middle agedness. The decision to avoid anything stronger is due to my history of alcoholism. I was told early in my recovery that if I began to use tranquilizers and narcotics, I would likely become addicted to them, in the same way that I had been addicted to alcohol. Whether I would truly have this propensity, I don’t know, but understandably I am very cautious. Recovery from alcoholism was hard enough.

There are exceptions to my rule. I do take Xanax pre-procedure when I get my Botox shots every 3 months. I do love the feeling of sedation, I admit, and I often think, ohhh, if I could only feel this way all the time. Relaxed; “normal,” even. Which only tells me further that I could easily rely on it too much.

I haven’t really felt the same attraction to narcotics, however, because most often they will trigger a hypomanic episode. Weird, huh? And so, I use Tylenol®, even post-op. Even after dental work. Even after my C-section. Hypomania, which almost inevitably leads to a dangerous manic episode,  is not worth any amount of pain relief I might experience.

ANNNyway. That is neither here nor there. I wanted to answer the question about addictions, but I’m digressing from the primary thing that I wanted to discuss.

From a paragraph in the original blog post, written by All Things Chronic:

Since we seem to be in a never-ending political cycle, perhaps we should put more scrutiny on the addictions of our politicians.  I mean, if someone running for governor goes to church every day, ignoring the demands of the other areas of his life so he can worship his god, I think that would be an example of someone who is addicted to religion.

I bristled, because I would be considered by many to be a religious person. Perhaps I am even “addicted” to my religion. Because of my relationship with Jesus, I essentially attend church daily. I have even experienced withdrawal symptoms, so to speak, when I have backed off from practicing my faith for short periods of time. By that I mean that I experience more difficulty in my life, emotionally and even physically, and definitely, spiritually. My hands can even shake more (I have a tremor). I experience more anxiety, and I “need” my “fix.”

I rely on Jesus for many things – including my tolerance of pain. He helps me to bear it, to function, and even to bless other people when I am suffering. Whether it’s physical, spiritual, or emotional pain, He is there for me. He’s also provided a Book, the Bible, that gives me peace, and even – pain relief. “When all else fails,” there’s prayer. Of course, that should be my first defense, but I’m stubborn. .

Do I practice my “religion” to the exclusion of other areas in my life? Well, I suppose that depends upon your perspective. Matthew 6:33  says, “But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.” All these things, to me, means “the demands of the other areas of [my] life.” Without Jesus, I will have no victory in anything else I seek to accomplish.

And, far above sustenance, there is the knowledge that there will come a day when Jesus will take me out of all this. The pain, the suffering and anxiety, the discouragement, and those days of mania. The stigma, the lost relationships, the confusion. Ooh, how often I long for and pray for that day! My hope is in eternity, where I will live forever joyous and pain free (physically and emotionally) with Jesus!

Revelation 21:4 And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away .

I am reminded of the conversation that used to go around AA: “People say that I am brainwashed. So if that is true – that I’m brain washed – I am all for it – my brain NEEDED washing!” That’s even more true since I have come to know Jesus. My thinking process and behaviors as an alcoholic, and as the “natural man,” do not serve me any longer. And there are far more areas of my life that need work.
So I need a different way of thinking. And AA helped me with some of that change. But it did not provide for my eternity, and it was a different kind of dependence. For me, it was basically a band-aid. AA did start out as a program based upon Jesus and the Cross, called The Oxford Group. However, Alcoholics Anonymous became more secular, more humanistic, so that people would find it more palatable. A member in one of Maine’s local AA groups used to say that he would pray to a doorknob he named “George,” so that he was technically praying to “something.” Talk about idolatry! Apparently this “power greater than himself, as espoused in the AA program, kept him sober. He was unable to pray to a “god,” so this “god of his understanding” served him. How, I don’t know.
I think it’s a shame that the help so many desperately needed was dumbed down to the point of removing the hope of eternal salvation. Does AA serve any purpose? Oh yes – I was not ready for churchyness, and it kept me sober for a long time. Maybe God knew that I couldn’t stay sober and alive by conventional means. However, I shudder to think that I almost missed out on the whole point – Jesus!
I am still a whiny old brat sometimes in regard to my “hard life,” and I say that because in comparison to His suffering and dying on the cross for me, my angst and my pain are nothing. Isaiah 53:5  says: “But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.” Who can say that they have suffered like Him? I am not saying that I don’t have pain and suffering; I’m just saying that there are times when I do need to buck up and live. When I can’t, I can’t, but I can seek Him, and eventually I can crawl out of my misery. Or He drags me. Always. Suicide is not an option!
I’m certainly not saying I’m perfect, just because I am “religious.”  I’m not even wonderful, yet (lol). But I am better than I was, thanks be to God, and not by anything I have done! Ephesians 2:8-9 says: “For by grace are ye saved through faith;and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” And Romans 6:23. “For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord.” It is a gift, not something I can earn.
I  have hope, even on my darkest days, even on those days when I push away all things “religion.” Thank God He never leaves me, even when I think I’m leaving Him!
And if that’s addiction, I’m all for it!

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-