OnabotulinumtoxinA for Cervical Dystonia User Reviews (Page 3)

• Der...
• Taken for 1 to 2 years
• May 7, 2022

OnabotulinumtoxinA "Had my initial series of injections, which worked extremely well, no more head twisting. That place stopped taking my insurance, but I found another doctor that would continue the procedure. Injections every three months. Worked very well until my third series of injections. I have been told the muscles in the back of my neck have become too weak, and the muscles in the front of my neck are pulling my head forward. I cannot stand straight up and tilt my head up. Very discomforting and at times very painful. It's like this intense pressure in the back of my neck and shoulders. It hurts to look up. Also, I have this weird sensation when I try to eat, I need to lean forward, and when I try to bring food to my mouth, I have difficulty opening my jaw fully. I have received injections in my front neck muscles to counteract the weakness in the rear muscles. Would like to know if anyone else has had similar problems. Now the cure is worse than the disease."

• rex...
• Taken for 2 to 5 years
• March 18, 2022

OnabotulinumtoxinA "I had been getting Botox injections for three years for my cervical dystonia, and it helped tremendously, but my last three injections caused respiratory failure. I had trouble swallowing, speaking, and breathing. The last time I got injected, 2 weeks later, I was asleep. I rolled over on my side, and as I did, I tried to swallow and could not. I couldn't catch my breath and panicked, I was gasping for air. For 4 hours, I was gasping for air. I thought I was going to die. That was my last time I got Botox injections. Has anyone else experienced these symptoms? I was getting 12 injections every visit to the neurologist, about 6 vials. It did help with my twisting neck, but now I'm scared to go back. My pain is off the charts, I got an appointment with pain management to see if pain pills will help. Has anyone tried pain pills? Do they work?"

• Kim...
• Taken for less than 1 month
• October 29, 2021

OnabotulinumtoxinA "Just received my first Botox treatment for neck pain 2 days ago. I'm now in worse pain than before. I can't bend my head down and can barely turn it. I'm feeling incredibly discouraged. This was my last hope...now I'm worse. Does the initial pain wear off?"

• Pup...
• Taken for 1 to 6 months
• September 14, 2021

OnabotulinumtoxinA "I had Botox shots for cervical dystonia 6 weeks ago. Sadly, the spasms have not gotten better, and I have developed extremely painful nerve “shocks” in my neck. I’m very tired and dizzy and experienced a day of urinary incontinence about 3 weeks after the treatment. I honestly don’t know if the failure of the treatment and the side effects were because of the Botox or the way it was injected."

• cat...
• Taken for 10 years or more
• November 14, 2020

OnabotulinumtoxinA "I have had cervical dystonia for 28 years. Initially, the pain in my head was so bad I was hospitalized. But after getting Botox, for the most part, it is ok. The key in my experience has been the quality of the neurologist administering it. I have had many. Mapping is essential. But then it is necessary to know exactly where in the mapped muscle to inject. A well-trained doctor can do this by feel. Others resort to EMG machines, which adds unnecessary pain. Many just guess and shoot. Botox is too dangerous and expensive to use haphazardly. It is a terrific remedy when done properly. I get 400 units every 3 1/2 months. But I just lost my excellent neurologist to Covid, and the new one has no sense of where to inject. I supplement with massage therapy, which helps my neck and back, but not head pain. Drugs did nothing or had horrendous side effects. Thinking of trying LLLT (cold laser). Anyone have experience with this?"

• GLS...
• Taken for 10 years or more
• April 25, 2022

OnabotulinumtoxinA "Receiving Botox A injections in the neck and shoulder area for 20+ years with excellent results. I suffered from extreme pain, which made it impossible to function. For 2 years, with no diagnosis, I tried everything from acupuncture to cortisone injections with no relief. Diagnosed by a neurologist specializing in movement disorders. He uses the EMG machine, so there is no guesswork in locating exactly where the activity in my neck is located and how deep. 250 to 300 units, approximately 10 shots every 10 to 12 weeks, some shots very deep. I was given my life back, able to raise my 3 children and then go back to work. To those who haven't had good results, I implore you to insist the EMG machine is used! Otherwise, shooting in the dark. I had terrible results with a different neurologist with less experience and no EMG machine. In my humble opinion, the EMG machine is crucial along with an experienced neurologist! Give it another try! Insist on EMG."

• Ano...
• Taken for 5 to 10 years
• April 8, 2025

OnabotulinumtoxinA "I read all the comments, and I would like to say that I have seen 5 different neurologists. In my experience, male doctors are not as gentle and intuitive as female doctors. Some just jab away with the needle, and sorry to say, but they didn't seem to know what they were doing. My last two doctors (both have retired) were fantastic. If you are not getting good results, I suggest you try a different doctor. I have gotten almost complete relief from head tremors with Botox, administered by the right doctor, of course. I am a needlephobe and have passed out twice during treatments (only with male doctors), but I endure the treatments because they work for me. Make sure they use the EMG machine. And make sure you like and trust the doctor doing the treatments, it makes all the difference."

• Joh...
• Taken for 6 months to 1 year
• December 13, 2021

"I was diagnosed with movement disorder/cervical dystonia this year. I was rear-ended while parked with no seatbelt on. My body flew right on top of the steering wheel. Botox helps me so much, but only in a small area. I have to get 4 injections in my neck and trapezius area. The injections are very painful! My doctor put the needle in 3 muscle groups during 1 injection to lower the injection amount. The Botox doesn't last long, less than 3 months of relief. I still have to take muscle relaxers, which only help for a short amount of time. The Botox helps my head not to get stuck. My head first became stuck with my head tilted backward and tilted left towards my shoulder. My trapezius area first went into spasms, which caused my waist to twist like a pretzel. I get injections every 3 months."

• Dou...
• Taken for 1 to 6 months
• July 31, 2023

OnabotulinumtoxinA "I was diagnosed with severe Cervical Dystonia and I've been getting Botox Injections, which is a life-changing experience! It works very well and I'm happy most of the time. Usually stays good for three months. May take a few weeks to get the right formula."

• Sam...
• Taken for 6 months to 1 year
• June 24, 2023

OnabotulinumtoxinA "I have had four rounds of Botox injections for the cervical dystonia I was born with. I find minimal relief with Botox. If injected into the right spot, it gives relief around the immediate injection area, but not beyond it, and there are many muscles in the neck. It would be impossible to inject every single one of them. It has side effects, namely more issues with swallowing and reflux, although dystonia causes issues with both of those on its own. It can't be good to receive a neurotoxin into your muscles repeatedly for a lifetime. That being said, it's the best we've got. DBS is a bad idea as most of the people I know who've had it are catatonic afterward and unable to communicate normally any longer. My neurologist in that cervical dystonia causes issues in your jaw or shoulders, but having been born with it and living with it for 40 years, I can tell you that, indeed, it does, both are adjacent to the neck, and both can absolutely be involved. It's frustrating either way."

• unn...
• Taken for less than 1 month
• December 2, 2021

OnabotulinumtoxinA "Friday, November 26th, I had Botox injections, all at 300 units for a focal segmental myoclonus. A neurologist gave me 3 injections in my neck for a twitch to the right, one on the left-hand side under the jaw, and 2 in the back of the neck on the right-hand side. My neck was very stiff in this area. I also had 3 further injections: 1 in the front of the shoulder, 1 in the back of the shoulder, and one in my side, which felt like it was in between a rib area. The second set of three injections were done with the use of the machine. I have read in the reviews that it is better to ask the neurologist to use the machine that reads the electrical activity. Am I right that the neurologist who gave me the first 3 jabs was just trying for pot luck, i.e., not using the machine, while the other, maybe his second in command, did the job correctly? Initially, the first night I felt I had an improvement, but since then it has gotten much worse. Although I can hear you all saying to give it time, I was told 10 days. Any recommendations?"

• Chr...
• October 1, 2008

OnabotulinumtoxinA "I have suffered with migraines and neck pain for many years. Botox has given me my life back. I have arthritis in my neck, and Botox is the only thing that has given me relief."

• CCI...
• Taken for 2 to 5 years
• August 25, 2017

OnabotulinumtoxinA "I have been receiving Botox injections every 3 months for the past 2 years. The injections have helped my cervical dystonia pain and muscle twitching."

• Sou...
• August 27, 2015

OnabotulinumtoxinA "Relief was immediate and dramatic."

• Jer...
• Taken for 10 years or more
• March 20, 2018

OnabotulinumtoxinA "The key to getting relief is both a good doctor and patience in finding the correct amount needed. Nothing will be perfect, but the injections provide the only sensible way to cope."

• Luc...
• January 9, 2020

OnabotulinumtoxinA "I am advised to take these Botox injections, but undecided at present. Want to hear comments of those who received Botox for cervical dystonia."

• Nic...
• Taken for less than 1 month
• May 28, 2020

OnabotulinumtoxinA "I had Botox injections into my neck, supposedly to help cervical dystonia, and I have found no difference at all."

• Ljh...
• Taken for 5 to 10 years
• April 20, 2021

OnabotulinumtoxinA "Treatments don't work anymore."

• sfe...
• Taken for 10 years or more
• May 26, 2024

OnabotulinumtoxinA "Botox has changed my life for the better. I have a lot more normal days than I ever did before. I feel so lucky I was finally diagnosed with cervical dystonia and there is a medicine to help me."