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Conditions

Cervical Dystonia

Cervical Dystonia

Cervical dystonia, also known as torticollis, is the most common type of dystonia and affects the muscles in the neck. There are thought to be 40,000 people in the UK with this condition with the average age of sufferers being the early 40s, and with more women being affected than men. Cervical dystonia causes the muscles in the neck to spasm or contract meaning that the head and neck twist, are pulled forward, pulled backward or pulled from side to side. These symptoms can range from being very mild to very severe and from jerky spasms to being quite sustained. As a result these symptoms can cause additional problems of neck pain and stiffness. Living with cervical dystonia can be difficult to cope with, as head turning can stop someone seeing the road whilst driving and make it difficult to eat, brush teeth or apply makeup. Therefore, many people with the condition find embarrassment and anxiety a major symptom as well.

Cervical dystonia is known as being a late-onset primary dystonia. Being part of this group means that the cause for cervical dystonia is unknown and in fact the condition itself is poorly understood. Cervical dystonia tends to develop gradually and in a quarter of all cases this is accompanied by trembling hands. It is thought that most cases of primary dystonia are caused by problems with a part of the brain known as the basal ganglia. This is a collection of brain cells that are responsible for sending messages from the brain to various muscles in order to move them. It is suspected that the basal ganglia does not produce enough neurotransmitters, or it produces the wrong type, resulting in problems with muscle function.

Stress can often cause the symptoms of cervical dystonia to worsen, and it has been reported that hypnotherapy and relaxation techniques can help by relieving stress. In most sufferers the condition will worsen over five years until the symptoms begin to stabilise, but a third of patients go on to develop segmental dystonia affecting the arm. Also, in around 10% of patients the symptoms can stop spontaneously and then reoccur later.

Unfortunately there is no cure, however there are some treatments available that can control the symptoms. Core treatment must be carried out by a neurologist, with botox being a common prescribed treatment. Other treatments include medication, muscle relaxants and physical therapy. With cervical dystonia, neck spasming can normally be relieved by touching your chin, neck or back of the head, known as a sensory trick, but the reason why this helps is unknown. Selective peripheral denervation surgery is also an option for those with cervical dystonia. This procedure allows the doctor to cut away the nerve endings that are connected to the spasming resulting in some loss of feeling in the neck afterwards.

For more information about Dystonia go to The Dystonia Society

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Hi, I'm 33 years old and have been suffering with this condition for many years now. I've been to physiotherapy, chiropracty, I even tried acupuncture but nothing has worked most importantly no one has ever thought to mention I could have this condition...it's by watching your program with that gentleman that I finally got a name for what I have. My neck has a mind of its own, I can't keep it straight without it wanting to turn to the left. If I have to check the road before crossing or while driving it all becomes very difficult and painful. I get nasty headache because my neck goes into spasm and my head shake. If I go somewhere being shy makes it all worse, I ll enter a room not matter where I am and that's it my head will turn to the left. I need help please, I don't know who to turn to anymore :-( I'm gonna try to speak to my GP now that I have a name for it, it might help the Dr with a diagnostic and giving me medications. But I need help please this affecting my life too much. I'm dreading getting married in June as I know my head will do its own thing... Thanks for any advice or help you could give me.





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been dignosed with cervical dystonia since 2009 the neck started twisting on its on previously had back damage did not link the two but after talking to others their seems to be a link just spent 3 days with garry nimmo active balance Scotland feel a tremendous difference no pain yes idid say you are reading this right no more pain killers and no more botox it did not work for me





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I am 40 and was in a car accident in 2000. I have had migraines ever since and was just recently diagnosed with CD. I like most others on here have difficulty working and I am a single mother of two, and the soul provider. I applied for disability and was denied. I am curious, has anyone else been awarded disability for CD?





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Hi, I've had CD for 7years now,and applied for DLA twice,went too appeal twice and won! Its hard work going to appeal and very stressful,which never helds with symptoms of CD! But I found the CAB really helpful,they normally have a benefits advisor who will help fill out the endless paperwork for you.and can I'm come cases goto appeal hearing with you,Always take someone with you to appeal as it increases your chance of winning! I've now been awarded highest rate mobility(because I cannot safely cross roads etc safely on my own,due to the severity of my CD) But be warned it can be a slow process that will literally drain you,but don't give up!! Hope this is of some help,and good luck.

I can certainly relate to what is being said in this forum. I was diagnosed with cervical dystonia in Oct' '13 but had been suffering with symptoms for at least 10 yrs. However, I was going through some very stressful situations in Oct. & my tremors and pain escalated like I had never seen it before. It was so bad, many people thought I was shaking my head no, which was a lot of fun explaining that I was in fact NOT disagreeing with them. And the pain had became so intense, I had to take very strong pain meds & try my best to function at work, typing with one hand. After seeing many doctors, I was finally referred to a neurologist who prescribed Clonapin (I'm sure I'm spelling that wrong). I've been taking that since Oct' but now the pain & tremors are starting to come back. I'm waiting for my insurance to authorize Botox injections. But until then, I'm holding my head in my hands (to stop tremors) and icing my neck, along with taking muscle relaxers. Overall, it really just makes me not want to be around people due to the embarrassment of the condition. Kinda just makes you want to cry (both from the pain and the isolation you feel). Hoping I will get relief from Botox injections. Hang in there everyone. :)





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I got cervical dystonia from the flu shot on October 29, 2004 and my only relief has been Botox but I find it is not as effective as it was in the beginning. I have been using Botox for 3 years.

Alcohol shots can be used to lessen the pain. Cost is about $60.00 compare to Botox at about$400.00. Shots are very painful & need to be done by a Doctor.





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Does anyone else experience severe fatigue? Some days i can not function and sleep for 24hrs straight. I have dystonia, following a car accident over a year ago. my symptoms have rapidly improved. At first I was in a wheelchair and couldn't walk and would have dystonic storms daily that would last up to two hours. Now I seem to have days of absolute exhaustion coupled with small storms. Other than that I am back to normal. The team of neuros said I was an exception to the rule and were genuinely surprised. Can anyone relate to my circumstances?





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Does anyone else have a thyroid disorder as well as cervical dystonia? Botox nor Dysport work for me anymore. I've suffered with this for about 10 years now. Up until last November the Botox worked ok. I now try to do aerobics or yoga everyday otherwise I get so stiff I can barely move. I've tried chiropractic which relieved some pain but worsened the spasms.tried 6 sessions of accupunture did not seem to help at all. I take 2 tryhexaphen 2x per day and clonasapam 1tab 2x perday. I feel stoned a lot of the time. Ive tried thousands of $ of New Earth algea tabs because a salesman claims he had blastoma [eyelid spasms) and thisalgea cured him. I've spent between 300- 400 dollars per month for the past 4 month and other than taking away my PMS symptoms they have not helped either. I am now working with a physical-therapist. I am 48 and have a 11 and 13 year old daughter. I pray for a cure but am greatful for everday that I can move around and drive my children to school. Bless you all and stay strong. Remember everything happens for a reason.





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Hi my name is Donald and I suffer from Cervical Dystonia since dx in 1999.I have been treated with just about every medication used for Dystonia for almost 15 years with the exception of one DBS. I am no longer on Botox injections because I had them for the first 6 years and became over time immune.I am writing to you as one of the many who suffer though the never ending pain of Cervical Dystonia.I also have onset Parkinson's Disease to add more pain and difficulty to my life.I will be 59 this coming March and have not been able to work for 13 years.There need to be a greater voice or speaker to the public awareness of Dystonia.





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Hi Im 19 and was in a car crash ten months ago.. Dislocated the C1 off the rest of my spine (the top most bone in the spine) and and although it was (finally) fixed about six weeks ago, I now have Torticollis from Dystonia that mightve been caused by not having been able to move my neck at all for eight months.. Anyway long story short I had botox injections three days ago and they gave me flu like symptoms for two days and nosebleeds, and now my neck is more painful than it ever has been! (and i had a dislocated neck for eight months so I know pain!) I just wanted to know two things, 1. Can botox work against itself and end up making it more painful than pain relieving? And 2. The surgeon and neurosurgeon wouldn't tell me how long until Im back to normal. Its not a life long thing right?? Because Im forced to live everyday in bed living in my parents house because of it and need the positivity of knowing it will heal..





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I fell at work about three years ago, two weeks later my head started to turn on it,s own....which I may add was quite scary. I had physio for three months and then was refered on for a soft tissue x ray, then an MRI scan. To cut a long story short after two years I was refered to a neurologist......who diagnosed me with having Post Traumatic Cervical Dystonia, At last I have a name for this condition , before I was diagnosed I actually thought I was going " mad " , even coping with the depression that comes along with it has been horrendous . I now have botox injections every three months, which I will be having for years to come. I am also on anti depressants , painkillers and sleeping tablets. Coping with sleep deprivation is the hardest thing to cope with my partner of twelve years gets the brunt of my frequent mood swings, The hardest thing go cope with is knowing this condition is permanent.





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