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Conditions

Cervical Dystonia

Cervical Dystonia

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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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Well its coming on to august now lol and i think ive cracked it.still to see neuro,and im supposed to be having injections in neck which i don't trust...anyway the sternocleidomastoid is a muscle which appears to be very overlooked by the nhs.these 2 ropes of muscle by your throat is where you hit gold....yes your told to do stretches etc head to shoulder,left to right etc but you really need to go to work on these..hand on side of chair and pull lean to the side looking up..you will feel the stretch instantly,i hold for 30 sec plus and have done this every 10 min or so..ive gone at it hard and ive gone from jittering,head wanting to fly all over to 95% cured...id not been diagnosed with dystonia by the way,but my guess is i would of been come aug...cos nhs not got a clue....i wonder how many are actually diagnosed when all its been is poor posture,strain,,ipad mouse era...poor habits,muscles become weak so weak.what ive had mimics this you see.....in everything i have read about necks rarely sternocleidomastoid was mentioned...my neck has gone from stone agony clicks,crunches to nothing now from pulling my arms off basically pulling on chair whilst sat on it..i am now going at it strong building muscle on my sternocleidomastoid. ....build your rhomboids too..stretch your traps also...walk! If you type in cervical dystonia on you tube this is what i was like at xmas time....im not saying ive had this but yikes looks the same to me.the quivering head giving way cant hold self up,,practically gone....i never thought this would end but i feel now it may well do...i stress,,none of these pathetic stretches youre told to do,did them and they got me nowhere...you pull and hold bottom of chair looking to sky...tilt head more and more .arms behind back palms down holding base of chair and pull..stretch your traps,.....fingers holding on to top of doorframe and hand...feel the stretch..head coming further away and free.....instantly clicking spasms sinus eye head pain gone. too right not alot known about this topic..trembling shaking it all nearly gone..i nearly quit and said to myself oh its stress..rubbish,,no postural integrity is the answer..stretch and build muscle..... sternocleidomastoid not one physio,not even orthapaedic doc hit home....lay back on bed turn head and grab these muscles,squsqueeze and i bet you have pain,massage and do trigger points from neck to jaw...then stretch em.......i was the jitter medication man...drugs dont work! not alot is known about this but my guess is its poor habits,thats my hunch....i know this has been long post but i repeat again,you can do these basic stretches physio give,but you gotta stretch hard and go to town..sternocleidomastoid! It controls everything and is the culprit for many peoples mysterious illnesses, sinus head neck pain...ive stretched thos sternocleidomastoid till my arms nearly came off..... somwtimes you gotta take things in to your own hands,for me the nhs have been useless,wrong exercises,docs leaping from 1 thing to another...injections eh,,well i rek ive sorted the prob out on my own.....i hope... sorry i gone on but im amazed at how far ive come in a few days.. sternocleidomastoid,,,i cannot believe nobody is told to work on these muscles....total integrity..ive stopped shaking nearly. amazing what brutal stretching does lol





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The guy in the prgramme had hypnotherapy. This can work for some and not for others. I've had 4 years of botox injections and they are now no longer working. The consultant has recommended deep brain stimulation (DBS) surgery, but I am somewhat worried about the risks involved. Anyone been through it??





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Hiya i was diagnosed with petit mal a mild form of epilepsy 18 years ago then 7 years ago the problems with the neck tremours pulling twisting ect all started , i have allways worked in the building trade and belived this to be a back related problem however not the case . Over the years i have had the injections which did nothing what so ever , medications , accupunture , nothing worked at all ! , however i started yoga 5 years ago and this does help relaxing the mind brain ect also relaxes the muscles , with this in mind staying away from alcohol , trying to exercise as regular as poss but more importantly than anything yoga ! hatha is the style i practice does help a great deal , this is the worse constant ongoing pain i think some times im going crazy ! , but stick with it as it naturally relaxes the brain in turn the muscles in the neck reducing stress levels , hope this helps even if its just the one person out there .





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Hi my name is Steve, I was diagnosed in 2010 just before my fortieth birthday . My head started with a twitch , I did not think anything of it to start with but they became more and more frequent . I then noticed that when i tried to cut up food that i could not look at the plate and my head turned to the side , I knew something was wrong . I saw my doctor and several others in the practice , none seemed to know what was wrong . I was off work sick and during this time the neck stared turning to the left this got worse and worse , looking back I am really surprised that I ever went out , I was stared at overtime I went out , I felt like a freak . My partner was very supportive and helped me through the bad times . Things got worse and I was admitted to hospital as i had difficulty eating and swallowing . After seeing the neurologist and having CT scans then MRI I was finally diagnosed with Cervical Dystonia , I was firstly prescribed medication but the side effects were awful then I was given Botox injections which is now Dysport . I had these every 3 months for the first 2 years this really helped , not straight away but over the time the symptoms almost completely went , I had a near normal life this lasted nearly two years without injections , I started to have twitches again and neck movement , so I again started to have injections which again are really helping . I think the thing is to know your limitations and don't overdo things which is hard to do sometimes , I also find that exercise helps me with the stress levels , stress definitely makes things worse . I am currently being treated at Kings Hospital in London and they are a great team really supportive .





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i have neck dystonia which after going to the doctors for 8 months i was finally diagnosed and then sent to see a nuerologist.I have botox every 3 months which helps , but when i have the dull aching pain in my arm and neck i use my copper braclet which eases the pain a lot , i have now also got a necklace ,which is actually a dog collar that they adjusted for me which i wear in the house , this also helps greatly as they both have earth magnets in,the company is called Laurance Butler copper braclets, they are a small business in cornwall who have been very helpful,the magnets in the products have help to releive the pain.

O m goodness Neal, am I glad I have read your comment, I do so hope that I am able to get the same treatment here in Britian, I will be asking my GP if this is available for me. Thank you so much. 😊 . To everybody that has put a comment never never give up hope always push the GPs and never take negative comments, go to another health professional until you are able to get what you need. And always read other people's experiences, as I just have and have discovered something new. Best wishes Jen.





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I suffered with neck pain and head jerking to the right for 25 years. I am now 74. Doctors just don't seem to get the word PAIN. I am tired of being sent for ct scan, prescribed pain killers, etc. etc. Today, after checking out the Mayo Clinic web site, went to my GP and told him I want tests done for Cervical Dystonia. I am going for initial x ray on Monday, and neurologist in about three weeks. By the way, this comment section is awesome; all of us have the same problem, and my ears are wide open to your views. Cheers.





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I have just been diagnosed with Cervical Dystonia after referral to a neurologist recently. I am told that medication will not help and am scheduled for MRI scans and botox injections soon. This condition feels as if it's totally taken over my life. My neck is constantly moving around and pulling to the right. My head feels heavy and unsupported and I am in constant pain in my neck and head, feel dizzy and it also affects my balance. Driving is difficult as I can't stop my head from wandering. I can be looking forward with my eyes before I realise my head is actually facing towards the right. I find it hard to function at work now as my job is in human resources, which makes it hard to avoid people! I must constantly look bored in meetings as I always need to prop my chin up to avoid the dreaded movements. My life away from work is none existent as I'm too embarrassed to go out if I don't need to. It's taken me forever to type this message as I struggle to look at a computer screen now. It is good to hear other people's stories though and I don't feel so alone anymore. Hopefully with the treatment the condition can be managed and I can continue to work in a job I love for a bit longer. I live constantly in hope that this nightmare will end soon.





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I have been dealing with this for 6 years now,I had nerve block shots for 5 years along with the pill Artane,my new neurologist is giving me Botox injections now,2 nd time I have had them,very little pain and the shaking is gone,I will definitely be getting them every 3 months

Did you ever strtch your sternocleidomastoid muscles and strengthen them?

For 7 months now my life has been hell.at first just to stand and keep head up was a issue without it wanting to snap the other way and the pain has been a 10.Medication has done nothing!Waste of time.This has passed nearly now although i'm left not being able to sit and look left or right without the feeling that its going to give way and i jitter.Having trouble typing now.Yes my posture and habits have been awful which i'm trying to correct.Been told it part strain and whiplash from waterslide and carrying luggage.No physio has helped although i've been told i'm very tense and yes i'm stressed.Can stress really do this i dunno but i just want my life back.i don't see how this can last so long and maybe docs are missing something.such a odd feeling not having control of your head. i give it to the end of the year then i just want put out of my misery.





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I'm in the same boat as you. This makes me mental, makes no sense. Enough already ! They can send a man to the moon but can't fix this.

Hello You need to go back to your doctor and insist he/she sends you to see a neurologist if he/she wont go to see another doctor until you find one that will in the mean time get youself a soft foam neck collar ebay do them you also need to keep of alcohol and smoking and try and eat a super healthy diet make sure you get plenty of sleep you will most likely need more than the average person DO NOT GIVE UP you will get help you just need to be sent in the right direction to get it. I am a single mum of 5 and work in a school in charge of the cleaning I have Cervical Dystonia which came on age 40 over a period of around 6 months I had to tell my doctor what I thought was wrong with me because he had not heard of it after months of blood tests and brain scans to rule out anything else it could be they told me da dada da I have cervical dystonia being the stubborn old mule I am I refused botox jabs bought a plastic neck brace which held my neck in a forward vice like grip and took my youngest 4 children on holiday after two days my neck twisted round so fiercely that I thought it was going to turn right round to the back like something out of a horror movie my sister had to collect us all and take us home in the end I could only get up for 10 mins at a time the pain was terrible it was at this point ending it all seemed like a viable option but I went and had botox jabs into the neck muscles instead which helped massively I haven't had any more botox for 8 months and wear a soft foam neckbrace all the time I made healthy lifestyle changes and life is okay again I do get weary sometimes and have to have the odd weekend where I am just crashed out on the sofa all day but that's okay I have a brain disorder after all.This is my story hope it helps some of you DONT GIVE UP KEEP GOING YOU WILL GET SORTED IN THE END IT TAKES TIME AND BEING VERY FIRM WITH DOCTORS ABOUT WHAT YOU NEED X X X

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Does this happen whenever it wants an goes away an comes back with a tremblimg head that shakes uncontrolably before you about to sleep or eat , when ur sat in a certain position an move in another angle for it to stop sometimes , or when ur about to drink it becomes hard to drink, an you can sence when its abt to happen because of somekind of stifness in the neck, need more information to find out if its related to any of CD or PD.





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I've not been diagnosed, but this forum has helped me see that there is a light at the end of the tunnel? I can't keep my neck and head still, and I suffer severe pain and stiffness in these areas. It is worst at night when I can hear my head moving incontrollably by the rustle of the pillowcase - and when I go to the dentist. They keep telling me to keep my head still, and the more I concentrate on doing this, the worse it gets. Sleep is never good. I can hear/feel the bones in my neck constantly clicking - and I do have hand tremor which is embarrassing. My GP thought that this might me a side-effect of my antidepressant, venlafaxine - which I need to take for life. Indeed, the tremor seemed to mimic the dose of the drug. I've also been diagnosed with sacro-iliac joint disorder - which cripples my bum and hips when it is bad. I've tried everything - so many orthopaedic pillows etc and nothing helps. I take Nytol very often to try to help me sleep. When I am up and walking round during the day, I almost feel like I can cope. It is when I have to be still that it really creates problems. I haven't been back to the GP about it because to be honest I was frigtened that I might be developing early-onset Parkinsons (I'm 52) - but your forum has definitely opened my eyes and I will go back to him. I hate for him to think that I have yet another problem (in addition to depression, high blood pressure, chronic back pain) - but hey - I can't help it!. Thanks for all your honesty - please let me know if you think this is what I have - and how can I get a diagnosis. My osteopath gives acupunture which sometimes helps - but it is only temporary - the shoulder and neck stiffness get excruciating and I can only find a tiny bit of relief through co-codamol





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It looks like no one else has asked this question, so please fill in the rest of your details below.





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