User Reviews for Botox to treat Cervical Dystonia
Botox has an average rating of 6.0 out of 10 from a total of 51 ratings for the treatment of Cervical Dystonia. 47% of those users who reviewed Botox reported a positive effect, while 33% reported a negative effect.
“I had the procedure every 4 months for 2 years and it was like magic every time. No more neck pain or dystonia. But my esophagus got paralysed at the last dose so had to get ambulance to ER. No solid food for 4 monthss. So sad to discontinue it. Searching for new treatments.”
“I received my first Botox injections 4 weeks ago for my Torticollus. I was in pain a few days after but it got better. It was about 85% better & then the last few days my neck has been twitching much worse. Especially during the day which wasn't a problem to begin with. It was the nights where it drove me crazy. Is this common? I only received 200 mgs. My doctor said 300 mgs was the norm. I am so frustrated! I have sent messages to my nurse & she will get back to me. Is this common?”
“Treatments don't work any more”
Frequently asked questions
- Where do they inject Botox for migraines?
- Does Botox for migraines also help with wrinkles?
- Dysport vs Botox: What's the difference?
- How does Botox help migraines?
- How many units of Botox are used for migraines?
“Botox has changed my life. From having my head twisted to the right and head pulled down to shoulder I am now completely straight and you wouldn't know I have dystonia. I actually had injections for years with little relief until I was referred to a new neuro where the effects were miraculous. When I see people say it doesn't work for me I often wonder if it's a case of the whether the person doing the injections is not getting a good result, going by my own experience. Of course I had the luxury of continuing being from the UK and it costing nothing. It could have been a very different story without the NHS.”
“Getting injections for 15 years with great relief. The key to Botox injections is that your neurologist uses the EMG (Electromyography) machine in order to find the nerve activity and inject the correct site. I insisted and the neurologist complied. I get my shots every three months and the doctor administers 250 to 300 units. I consider the injection pain nothing compared with the pain my neck suffers without them”
“Thank you for the opportunity to share my experience. I was diagnosed with cervical dystonia. I have been taking the shots for three years. I receive these shots every three months. The pain from these shots is very intense. I believe l receive seven injections per visit. I have tried to ice the area, it does not help. I have had pt, as well as acupuncture, neither worked. I find the shots help for about three months. I like the results, but don't like the pain. The doctor says it is due to the tension of the muscles. Anyone having this problem? Thanks for listening.”
“I tried Botox injections in the back of my neck and front left side for Cervical Dystonia 2weeks ago today. Total of 16 injections, the pain was something I never want to go through again. I have missed a total of 24 hours at work due to pain and overall difficulties with talking and of this weird feeling of my head being pulled back into my neck. Intense piercing pain in the top of my head in the back. I have difficulty lifting with pain in my upper back, shoulders and neck area. I am getting cramping at the back of my head near the hairline. Difficultly turning my head to the right (making it hard to reverse when driving). My throat is swollen it is hard to eat. I knew about this as being a side effect. But the rest has been so much of a burden that I rather have a head that shakes. I can’t see myself going through this process again. To top it all off my head still is shaking. I am excited for this medication to wear off.”
“I was diagnosed with Cervical Dystonia after months of pain and a few years of wondering what was happening to me. It came to the point where I was depressed and exhausted all of the time and felt things would never ever get better for me. After different medicines, physical therapy and acupuncture I finally was sent to a Neurologist who confirmed my Dystonia and started Botox injections. The first treatment had no effect as they had to start with a small dose so one vile. I had to wait 2.5 months before I could receive another treatment and at that point was given 3 viles. I finally found relief and got my life back. My Dystonia will probably forever affect me but with the Botox I can barely notice it. It is truly a medical miracle that this works.”
“In 2000 I was diagnosed with cervical dystonia. I received my first series of Botox injections in October 2001 & right away I could tell it was a great relief. In 2004, I started having difficulty with more head tremors. I started on a low dose of Klonopin at just 0.5 mg as needed. It keeps my head pretty stable without the tremors & I can attend events, etc. and feel pretty confident. I would like to recommend a wonderful organization that I joined in the beginning that really provided a lot of useful information. The National Spasmodic Torticollis Association has a yearly weekend symposium where they have noted speakers & doctors talking on dystonia & the newest breakthroughs. I went to one that was held out here on the east coast close to my home & it was very informative & encouraging to meet others with the same disorder. Don't ever give up!! Good luck and God bless.”
“I have Cervical Dystonia and the first time I received the shots they didn't work I felt like it made it worse but doctor said everything I was going though was normal it would get better, she said just put ice on my neck and if that didn't help try a heating pad that didn't help so I desided not to have the shots any more, but about 6 months later I decided maybe I should try the shots again so I did and I'am glad I did because they worked the second time. I have to say when I get the shots and they hurt really bad they seem to work better I know that sounds crazy but its because she is getting the muscle that is causing the dystonia to act up. I'm really glad I give it a second chance. So if you are like me and gave up maybe try it again.”
“I received the series of Botox injections 4 days ago in upper traps and scalenes Since then I’ve been much worse - upper traps and cervical areas are exceptionally tight to the point where I can barely do anything Nothing is helping - Pt, MED’s, anti-inflammatory drugs, heat etc I’m in much worse shape - not sure how long this may last ! I’m worried !”
“i HAVE FINALLY FOUND AN MD. THAT KNOWS WHERE TO INJECT IT. I almost gave up after 2 and 1/2 years of failures by guessing Dr.s who didn't really know where to inject. They were always hitting the opposite side of my neck thinking that was where the problem lied... finally found a dr. who knew where to inject it. Now I have been straight necked for the first time in 25 years. Hell yes it works and no side effects... but for some reason I still have the pain (radiculopathy) on left side.”
“I have both cervical dystonia and spasmodic dysphonia. I receive Botox injections in my neck, shoulders and voice box. The injections in my shoulders accompany the injections in my neck for cervical dystonia. The injections in my shoulders leave my shoulders feeling knotted and cause frequent headaches and muscle pain. My Neurologist told me the Botox should get rid of the pain and not cause it but in my case, the headaches and muscle pain are noticeably there. Does anyone else experience this problem?”
“Recently diagnosed with Cervical Dystonia (CD) and occipital neuralgia. Neck pain right side, shoulder spasms, 11 months. Headaches eight months. Pre-botox: PT, acupuncture, anti-inflammatories, nerve meds...steroid injections, ablation, cranio sacral, osteopath. No relief. Two weeks ago botox for both. Headaches disappeared immediately Neck pain unchanged. Wrong diagnosis? Sleeping better with headaches gone but still exhausted. Recently had annual physical. High blood calcium level wondering if that could be related to neck pain. Still too soon to tell but hoping botox will work. Don't want to wait for next round. Only negative side effect is weird sensation when I try to eat or lean forward. Like I have a two pound weight on back of my neck. Also, when I try to bring food to my mouth, subtle difficulty opening my jaw fully. No trouble swallowing. Anyone else have this?”
“I've received botox injections for 2 years, once every 3 months, it's for the neck muscles that are spasming and also cause severe jaw pain. Long story short, I did receive some relief in my jaw. But with 3 exceptions, I've had a significant head tilt that is just as painful as what was being treated. The back of my neck hurts so much and I can't hold my head up. It's been almost 1 month since the procedure and this is a 24/7 occurrence. I'm so desperate for pain relief (it's due to a car accident 20 yrs ago) that I keep going back, hoping that the next round will be the one to work. I wouldn't do this unless you've exhausted all other options. The risk is too great.”
“I received injections in neck, shoulders and calf. Serious side effects of feeling like I have been poisoned for 1-2 weeks after the injections. I still have incredible pain and muscle weakness. My calf muscle still cramped and knotted. Difficulty swallowing at times. I really don't know if it worked at all for me. It's been a year and I still am wondering what benefits I am receiving.”
“Each time I have had injections, the spasms stop within a couple of days, but then I have severe weakness in my neck and weird gait disturbances and muscle weakness in my lower extremities for up to 3 months. Just about the time I decide I won't get injections again, I have had pretty bad neck spasms and upper back pain, making me reconsider getting more treatments. It's a vicious cycle.....”
“I had my first round of neck botox injections around 10 days. I had moderate neck and shoulder pain for months. The doctor which I saw recommend botox without mentioning anything about side effects. Now my neck is too stiff with limited mobility. Also, I am experiencing swallowing difficulties occasionally. Overall, my neck feels weak all the time. My doctor is now suggesting physiotherapy with hot/ice packs everyday. I hope this disappears fast and not in months. I am done with botex for good.”
“I am a 54 year old female and was diagnosed with cervical dystonia in May 2019. I’ve had Botox injections twice, and my 3rd set today. The previous ones didn’t do much so hoping these ones will. I also am going to physio. The tremors are getting worse and becoming embarrassing. Especially at work. Praying these injections work finally. ”
“Hi there! I am 53 yrs old and was diagnosed about 4 months ago with cervical dystonia. I am currently not working since June as I couldn’t stand the pain any longer. I had my first Botox injections about 3 weeks ago and really not much has changed. I was sooo optimistic but felt so discouraged afterwards. After reading many of these comments saying that it could take 2 to 3 different times before I see relief, in holding out and staying positive. Happy thoughts and prayers that I’ll have a good ending ”
“This is probably the best solution to cervical dystonia out there, other than physical therapy. While it didn't take all my pain away, my headaches subsided tremendously! I highly recommend getting this done. It is only needed every 3 to 4 months, and the injections aren't too painful to sit through.”
“I have had two rounds of Botox for cervical dystonia that was causing headaches. The first round got rid of the headaches but I could raise my arms above my shoulders. The second round given eight months later did not relieve headaches and resulted in a bobblehead. I could not hold my head up and had worse headaches than prior to treatment. Needless to say, I am through with Botox.”
“Suffered undiagnosed since I was about 18. I am 74 now and thanks to this site and others, I diagnosed myself and got referral to a wonderful neurologist. I got my first injection last week, and for the first time since I was a kid, I feel like a kid again. It's not perfect, but I never knew perfect. No more pain, and I can walk again and not think about my neck. I wish I had this before I left my wonderful job on a handicapped pension. It gave me my life back.”
“I have been diagnosed with cervical distonia and was given the botox injections and it has been10 days and I cannot bend my neck to even eat! I need to know what I can do about it! What other treatments are they?”
“I have been having injections for over 1 year now. The dosage was increased, per my request, in December. This seemed to work well, although it still didn't last any longer. I went in in March for my next dose, which was the same as December, and this time it's just awful. I have constant tremor, I have jerky movements at times, neck pain, yet I can tell that muscles are definitely weaker....if fact even more so than last time. Is this a sign of too much? Or injection error? I am seeing a neurologist, I did have 1 appointment with a movement disorder specialist (3 hours away), does anyone have suggestions? Should I return to the specialist?? Any input is appreciated!”
“I have cervical dystonoa for almost four years. I started with physical therapy, this was for 4 months. I then tried acupuncture, this was tried for 2 months. After going to several other doctors, l found a movement disorder specialist. Is is the best thing that ever happened to me. I now get botex injections in my neck every 3 to 4 months. I occasionally still have small tremors, but it is 90% better. The only thing that is difficult for me is the pain in my neck when l get the shots. This usually goes away in 3 to 4 hours.”
“I have been diagnosed with cervical dystonia. I did not have any real pain. I just had the head shaking which made it difficult to sleep with my head bouncing on the pillow. I got Botox shots about a month ago. The head shaking is much worse and the pain on that side of my head, neck and shoulders is intense. My doctor used the machine someone mentioned and knows what she is doing. It is just not working for me for cervical dystonia. I have had it for wrinkles and it works great for that. I am waiting for a call back from her to see if there is anything they can do to help the pain and shaking this has caused. Do y'all (yes, I'm from the south) know of anything that will help? I'm really hurting.”
“I'm writing again because it's been a little over a year since I posted my experience with Botox for dystonia and migraines. This past year has been truly remarkable and while I haven't been 100% migraine free or pain free, "Life is Beautiful". My doctor, God bless her, received training from Allergan on the latest protocol for migraines, so the frequency of my migraines has lessened with the new therapy. As I am writing this, I am amazed that not ONE muscle is in spasm in my neck...now the tears are starting. It's so wonderful! That's what I wanted to share. Every time I've gotten my injections it's been a little different, but I think the variable has been me...not the Botox. Don't give up. Try it if you can.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
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