In December, 2007 something "went terribly wrong." Eloise had been taking 200 units of botox four times per year for the past few years - for relief from cervical dystonia, and it had provided her with some relief.
(In December, 2000, the FDA approved the use of Allergan Inc.'s botox for the treatment of cervical dystonia (CD). Injections of this product are meant to decrease the severity of abnormal head positioning and postures as well as associated neck pain. CD, also known as Spasmodic Torticollis, is characterized by involuntary movements of the head as a result of muscle spasms in the neck and shoulders. Spasmodic Torticollis can also cause pain in the neck or shoulders.)
One series (of several injections) consisted of 200 units, but for some unexplained reason, Eloise was given 300 units on her last visit. "During that visit, one of the needles hit a nerve and I remember yelping, it was quite painful," Eloise says. "My husband even heard me out in the waiting room. The pain eventually left but I never got the relief.
"When I got home, my neighbors said I looked terrible. By the next day I looked worse. I didn't even consider that it could have been due to botox. I seemed to be in more pain, weak and shaky. As well, I have a balance problem but it has never been disabling. Now, it was really bad. On the third day, the muscles in my neck were all limp and soft and I couldn't hold my head up.
Dumb me, I still didn't connect it with botox. But I had never heard of any adverse events with the drug, nor had I been warned. That was December 19th. Just before Christmas I was getting scared. I literally couldn't hold my head up at all. Then my eyesight was affected—blurry vision, which I still have. Then I fainted and fell, three times between Christmas and New Year's Day. Louis, my husband of 60 years, told me that we were going to the hospital.
At ER, they checked me for brain stem stroke, all kinds of things. They kept me overnight and the next morning told me they couldn't find anything wrong, although they knew something was wrong.
I was getting worse. I had an appointment with the neurologist on January 8th—he was giving me the botox injections. But on the way to my appointment, I got very sick and told my husband to take me to hospital. I missed the appointment. The neurologist saw me at the hospital the next day and the following day, he and his partner took themselves off my case and said 'I was not their problem.' Why did they do that?
I was in hospital for a few weeks and wasn't allowed out of bed. Sometime in late January, I was sent to a nursing home, where I stayed for 10 days until I came home.
My husband bought a soft-collared brace for me to help hold my head up. I am gradually getting better but I will never take botox again. It is too coincidental that these symptoms occurred right after the increased dose of botox. And it affected my brain in some way, although I didn't have a stroke.
I didn't put two and two together until I was in the nursing home. One day it just occurred to me that I was fine before the last set of injections; it dawned on me that the doctors had ruled out everything else—no stroke, nothing, yet I was terribly disabled.
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In late March, I was hospitalized yet again and they ran a multitude of tests. Still no diagnosis. I discussed botox with my general physician and he indicated that it was a possible cause. He has since done some research and is beginning to come around to my way of thinking.
I did some research on the internet and looked up treatment for cervical dystonia. I knew I was getting botox but then I discovered some articles about the side effects, such as paralysis. I was shocked, thinking that my neurologist knew what botox had done, because to this day he has never called. And I haven't called him. He hasn't scheduled any more appointments.
I am really afraid of going public—who will treat me if I do? I never felt my age until this happened."