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"I want the World to know about Botox"

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Jacksonville, FL"I would like to get up and scream to the whole world about the terrible things that happened to me after my last series of Botox injections," says Eloise. "I want people to know that Botox is frightening." Unfortunately, Eloise can't get up too easily—she can barely lift her head.

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.

Botox Treatment(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.

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."


Posted by

Botox in my neck for cd two years now. I now have tendinitis in both bicep tendons. My arms hurt most of the time, never did this happen before the Botox treatments.

Has anyone else had this happen?

Posted by

I have been receiving Botox injections for my segmental dystonia. My dystonia effects my jaw, left neck back, torsion left spine, my right leg and arm. I have been through 3 types of Botox. The Allergen type A, Xeomin type A, Myobloc type B which dried my mouth out so badly it gave me thrush and a sinus infection. My tongue burned so badly for 3 months it felt like it was on fire.
I have only had relief from type B had great muscle relief from the myobloc for a short lived 7 weeks but my doc would not continue from the infections.
I get injections every 3 months from my movement doctor whom never adresses my concerns of being so weak when I am given over 200 units of any type A product. I can't lift my head up, eating is impossible, I feel I have no taste left from the jaw injections. It's been over 2 years and I am done with Botox. I had 300 units of xeomin on 11-30-16 and I have lost 13 lbs I'm 5'7 " 108 lbs now. This has been historical weight loss up and down.

I have been so weak all I can do is keep up with tidying my room for 10 minutes, trying to keep up with bills, and showering is exhausting. If I get under 300 units I don't get any muscle relief. I have solely have to rely on my parents mom nearing age 70 and father of 74.

I believe the Botox has not helped me but weakens my body so much that it worsens my dystonia. My spasms at night in light sleep also seem to worsen approx 19 days after Botox. I twist my legs very badly this also lessens as the Botox wears off. Since treatment I have been unable to live in my own townhouse, I am forced to sell it move into my parents home for assistance.
My movement doctor seems very bright-terrible bedside manner but he has hurt my feelings on many occasions and has made me lose hope and is never honest with me and the side effects. When I ask him questions in my appointment about what specific injections do, he asks me why I am asking and that I read too much on the internet.
He also told me dystonia is not as painful as I describe. I take no controlled pain killers besides the normal non controlled regimen for dystonia. Every time I have Botox I get severe loss of appetite and stomach issues which seems to come back as the Botox wears off before my next round. It also greatly seems to effect my nervous system and major brain fog which wears off as the months go by.

My doctor has even gone so far to have the nerve to recommend me seeing a gastro doc to have my stomach scoped for the weight loss issues and gastro problems!

He also embarrassed me greatly in front of 2 of his resident students saying I needed to go to a psychiatrist that so am dreaming up these side effects.

I also get shallow breathing and have to press a certain spot on my neck to swallow larger chiunks. I prefer soft foods. I have limited options in my city with my insurance. I don't know how to handle this. I have asked about DBS but he wants to wait. I am 36 years old and used to be competitive in skiing and snowboarding and rode horses for many years and had a good job.
This has been life changing for me and my doc has no regards to getting me back to what I love and need to do. I am scared for my future after my parents passing.

I just hope this sheds some light to someone out there whom may be struggling like me with Botox and their dystonia. I know Botox works for some and can tolerate it. I am not that lucky one.

Posted by

I have oromandibular and cervical distonia. My neurologist put 50 units of Botox in each jaw( extremely painful). 10 units under my chin and the rest was put in the muscle down my neck and top of shoulder(290 units total).
This was my first and last visit.
I had severe reaction. My bottom jaw was "Frozen to the point I could barely open or move it at all. Eating was almost impossible. My throat was so tight I was breathing very shallow and speaking was difficult and exhausting. I couldn't hold my head up and had to use a cervical collar. The pain in top of the shoulder was so severe I could do nothing but lay down for a month. Driving was out of the question as I could not turn my head in either direction. It's been six weeks and I still have great difficulty eating and swallowing( doing a lot of choking). Can't bend over and speaking is still uncomfortable as I feel like my throat is being squeezed tightly.
The neurologist was very nonchalant at my three week follow up and said I had a bad reaction that most people don't have. He wouldn't admit he gave me too much Botox for a first time visit. He said " next time we'll only give you 200 units". He should have started slow and worked his way up instead of going to the max right away. I'll never have Botox again and that doctor needs to go back to med school. I trusted him because he said he had 26 experience dealing with this disorder.

Posted by

On September 1, 2015, I was given Botox injections by my neurologist for a diagnosis of Cervical Dystonia. Now I cannot hold up my head. I am told it is as a result of the Botox injections. I would like to know if when Botox wears off will I regain control of my head.

Posted by

My sister is now dead.
She received botox for cervical dystonia.
Began a high fever and in 3 days was found on her couch non responsive. DOA at the hospial in Tulsa OK.
I am waiting for the medical examiners report.
Sad and angry.

Posted by


Posted by

The same things happened to me!!! I wouldn't be surprised if it were the same doctor not paying any attention to details. I had injections of 100 units with guidanceand the pain relief was AMAZING for almost an entire year. When I returned for the second it was extremely painful, unlike the first time, no guidance, I left in tears, and was given 300 units. Each day after I got worse and worse until I couldn't even get up on my own. I spent months recovering in physical therapy and trying to just have feeling. I saw a neurologist and he told me I was overdosed. 300 is the standard adult dose. BUT I am five foot tall and 120lbs, not such and average adult, not to mention I am a neurology nurse. I should have known better! Anyhow, thanks for sharing your story.


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