Botox for Cervical Dystonia User Reviews (Page 2)

• sus...
• Taken for less than 1 month
• June 26, 2018

"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."

• Anonymous
• September 1, 2009

"I have cervical dystonia and have been treated with Botox for 2.5 years. Botox had many, many side effects for me in the beginning: trouble swallowing, severe headaches, floppy head. It does take away the spasms where it is injected, but I am finding help with trigger point injections and osteopathic adjustments. They don't stop as much of the pain, but they have fewer side effects than Botox."

• Dav...
• Taken for 1 to 2 years
• March 3, 2017

"Amazing. I had cervical dystonia from an allergic reaction to a drug when I was a kid and have been dealing with it and the pain half my life. It has stopped me from being active, among other conditions I have had. Since doing Botox, I haven't thrown my back or neck out, my pain has lessened and my quality of life has increased tenfold. I just got another shot (we are still figuring out my exact amount) and have been doing it for close to a year now. It takes time to reach the right amount, and they don't want to give you too much early due to severe side effects of paralyzing your muscles and causing a droop in your neck or difficulty swallowing, which can last several weeks or longer. I think I am close to finding my sweet spot. Don't give up!"

• Moj...
• Taken for less than 1 month
• June 8, 2020

"I had my first round of neck Botox injections around 10 days. I had moderate neck and shoulder pain for months. The doctor whom I saw recommended 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 every day. I hope this disappears fast and not in months. I am done with Botox for good."

• Sar...
• Taken for 10 years or more
• January 18, 2013

"I have suffered with cervical dystonia for over ten years. I am now having Botox every 2 months, and now the amount has increased. I wouldn't be without it, but feel now that it isn't working as well as it used to. Have a fantastic consultant neurologist."

• Pia...
• Taken for 2 to 5 years
• March 21, 2018

"I have cervical dystonia and received Botox every 3 months for 3 years. The worst side effects were: intense pain in the injected muscles, head drop, and mild dysphagia. I didn't have the side effects after every series of shots, only some. My doctor also said there should be no pain with Botox. I think the Botox company needs to do some additional research about the side effect of pain because most of the posters here have complained about it. The head drop I had after many of the shots, and I had to put my hand under my chin when I was walking to keep my head up. My doctor managed to get it perfect (with little to no side effects) maybe 4 times out of the 10-12 times I was injected. Then I went into remission for 4 years. Still had cervical dystonia, but I felt it was manageable. A good physical therapist can be an enormous help if you are diligent about doing the exercises. Now it's back, and I'm scheduled to receive Botox in a few weeks. I'm apprehensive....."

• Nip...
• Taken for 1 to 6 months
• January 15, 2020

"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."

• me...
• October 12, 2015

"Botox made my cervical dystonia 100 times worse. I'm still in a lot of pain but wouldn't go near it again. I tried acupuncture, it worked straight away. I ended up with a punctured lung through this. I'm with the Dystonia Society, and many people say it helps them, so I'm just unfortunate. Still looking for pain relief, but it looks grim, as I've tried loads of drugs and things like yoga, shiatsu, and massage."

• Soo...
• April 27, 2022

"My balance became worse after Botox injections in the neck. Two days after treatment, I blacked out. I feel the dosage was too much in one session. I’ve been afraid to carry on with this treatment. Very negative for myself."

• jan...
• November 25, 2017

"I suffered for years from neck pain, thinking I had problems with a disc. Three years ago, I developed a tremor in my head, a no-no type of movement. My PCP said I had essential tremor, so again I put off going to a doc who knew what he was talking about. I decided suddenly to see a neurologist, and I'm so thankful I did. Diagnosed properly, and then the Botox, which is wonderful. I would say the pain is gone 100% and doesn't even start to come back until about the tenth week after. The tremor has greatly decreased, and I feel like myself again! Happy and so grateful."

• Ryo...
• Taken for 2 to 5 years
• March 1, 2019

"After MVA, I had cervical dystonia. Botox helps reduce spasms. Used in conjunction with physiotherapy. After initial treatments, felt like I had the flu and felt ill. Also made vestibular issues worse for a time because all mechanisms are related. Still unable to do activity due to a combination of issues, although the Botox is definitely helping. Anyone suffering from head injury or whiplash should be sure to get assessed for neuro-vestibular and neuro-ophthalmology issues, also certified physiotherapists specializing in upper cervical spine. Do not recommend chiropractic to treat a traumatic injury like whiplash. Most doctors are clueless, so you have to do your research. Hope this helps someone. Take care."

• nol...
• Taken for 1 to 2 years
• April 24, 2019

"Family member has cervical dystonia (CD) related to Parkinson's disease. He was receiving Botox from a specialist who eventually retired. Was not effective. New MD is a physiatrist, and he began with trying different dosages (increased) and mapping out where he injected the Botox and how much he administered in each muscle. Targeted many different and small muscles. My husband has had about three rounds with the new MD. Previously, his head was severely tilted to one side. Now the head is almost perfectly straight. He still has neck pain, but maybe the pain will improve with time since this is a new doctor. He also receives physical therapy from an excellent provider. The physical therapy is not merely heat or cold pack, electric stimulation. It involves active patient participation, stretching, and strengthening. No traction. Improvement may be due to the combination of therapies."

• Exh...
• Taken for 1 to 2 years
• August 24, 2022

"I was undiagnosed/misdiagnosed for 9 years. After insisting on a referral to a neurologist, I was diagnosed with cervical dystonia, a condition I had mentioned to my GP 8 years prior but was basically laughed at. Cervical dystonia can present itself in many different ways, and my tremor wasn't always visible. Anyway, I have been started on Xeomin-type Botox injections but having only very minor improvements. I've been told I have very deep muscles causing my dystonia, and the side effects are risky for these very deep ones. After my last visit, I had an episode of my airway clamping shut and what is called 'stridor.' It was terrifying, but the neurologist seems to think it had nothing to do with the injections. Has anyone else had this happen? I'm supposed to be seen every 12 weeks, but my appointment never comes, I always end up waiting twice as long. I'm really not sure I'm having benefit enough and if the deeper muscles are feeling worse because the others are weakened. Constantly exhausted."

• MJa...
• Taken for 6 months to 1 year
• July 25, 2018

"I have been on Botox every 3 months for about a year. Just now getting the dose correct (I hope). It has worked wonders for me, but does not hold me the whole three months. I was out of town last week and had a major flare-up. I ended up trying cold laser therapy, and it helped a lot. I was upright in 24 hours! My neuro said it was okay to try, so I am going to see a local doctor to see about continuing it. I hope to get off Botox if possible - even though it works. It is so expensive. Has anyone else tried cold laser therapy?"

• Twi...
• Taken for 1 to 2 years
• February 15, 2016

"Botox did not work for me. A geneticist confirmed that I have DYTI dystonia, which is one of the hereditary forms. The symptoms I'd experienced were on the left side of my neck. Botox did reduce those movements. Unfortunately, my head steadily began to pull to the right and my torso twisted as well. I also experienced 'floppy head,' which feels like someone is pushing the back of your head so that your chin nearly touches your chest. Not fun. Botox is also a toxic substance, and the full effects are not yet known. All of this may be due to the genetic nature of my condition, so it may work better for those with the secondary type."

• Soo...
• Taken for 6 months to 1 year
• November 13, 2019

"I’ve suffered with cervical dystonia for 18 years. Several years after diagnosis, I had two sessions of Botox. The first injections made no difference. After the second session of injections, six in all, I blacked out two days afterward. I was obviously given a dose that was too high and felt they were injected into the wrong muscles. Prior to this ‘treatment,’ I was able to walk unaided, but ever since, I need a stick or walking frame."

• hji...
• October 27, 2016

"It took me four years to discover that Botox injections from a neurologist were the answer to my chronic neck pain, which was a result of a car accident and subsequent failed neck surgery. No doctors that I had visited ever suggested Botox shots. All other solutions presented by my doctors did not work. That includes physical therapy, steroid shots, and a lot of different pain medications. I have found that I need to go for a Botox shot about every 3 months for pain. The only problem is when I moved to another state, I found that there is a lack of trained doctors who do Botox shots for neck pain. I now have to wait 6 months for an appointment."

• Nit...
• October 5, 2017

"I am about to get my second dose of Botox and very scared to do so. Three months ago, I received my first dose. It was very painful and took 3 1/2 weeks for the pain to go away, the pain was very extreme. The doctor said the shots were supposed to ease the pain, well, that was not the case. He explained that the next round of shots might be worse since he knows I have bad reactions to it and asked me if I wanted to bear that pain. After reading reviews, I decided to go ahead with the dose in November, even though I am scared, but according to y'all, it only gets better. Hoping for the best."

• Anonymous
• Taken for less than 1 month
• November 10, 2018

"Received my first treatment today for CD right rotational/retrocollis. Mostly rotational. I know it’s supposed to take time, but I have already felt the muscles loosening and have better control of my head and can look left. Increased range of motion already as well. I thought 100 units spread out wouldn’t be enough, but so far, so good. Excited to start being able to do more PT to work on neuroplasticity. No pain at injection sites or anything on day 1. I believe they hit my left SCM, right splenius, right levator scap, and right obliquus inferior, but I’m waiting for the report. My doctor isn’t much for explaining things or giving feedback."

• Tin...
• Taken for 1 to 6 months
• May 22, 2021

"I received my first Botox injections 4 weeks ago for my torticollis. I was in pain a few days after, but it got better. It was about 85% better, and 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 mg. My doctor said 300 mg was the norm. I am so frustrated! I have sent messages to my nurse, and she will get back to me. Is this common?"

• Jan...
• June 13, 2021

"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 paralyzed at the last dose, so I had to get an ambulance to the ER. No solid food for 4 months. So sad to discontinue it. Searching for new treatments."

• JDa...
• Taken for less than 1 month
• December 22, 2020

"On November 26, 2020, I received Botox injections for cervical dystonia. Two days after the injections, my head felt like it was too heavy to hold up. My neck, shoulder, and right scapula experienced extreme pain, more than I had before. Now, 26 days later, the right side of my neck and shoulder is still very sore, unable to keep up my normal routine. I will not do this treatment again, and hopefully once this stuff wears off, this pain will dissipate. Wish it had been a better experience."

• suz...
• Taken for 2 to 5 years
• January 4, 2021

"I have cervical dystonia from a spinal cord compression from a fall 3 years ago. I had an amazing pain management doctor to help me with my diagnosis and began Botox as soon as my insurance approved it. I switched to Xeomin (not much better) when it comes to post-injection side effects. The injections themselves do not hurt, but 3 days after the injections, the spasms, swelling, and pain are unbearable for about 2 weeks. They do help in the long run, but the frequency can cause 'injection fatigue' for those of us who don't tolerate the toxin."

• Sue...
• Taken for 10 years or more
• August 1, 2024

"I was diagnosed with cervical dystonia in 2001. Unable to get any help from the NHS, I had my first experience of Botox from a private neurologist at £200 a shot. Luckily, he also had an NHS clinic which he transferred me to. I started with injections to both sides of my neck, but after a few years, the muscles on my right side became very weak, so I now only have one injection on the left side of 400 units. This works really well, and apart from some pain and stiffness at times, which I control with diazepam, I am able to live a normal life, for which I am very grateful."

• Ard...
• December 9, 2020

"I was diagnosed with cervical dystonia in 2009 and started having Botox injections every 3 months. Initially, I was getting a little relief. I needed a neck fusion a few years ago. Now my life is a nightmare. Occasionally, I get Botox injections out of desperation, but for me, they’re only making me worse. Works for some, not for me."