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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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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.

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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The man that was in embarrassing bodies got some kind of treatment which made his CD completely cured,could you please let me know what treatment he had and where I could get same





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I get cluster headaches as well as migraines often my doctors can't figure me out I'm only 30 my ct on my brain was clear eyes checked are 20/20 ct of spine showed minor endplate degenerative changes and I have mild facet degeneration disease in c2-3 c6-7 L5 -s1 but nothing helps my pain or explains it my neck pulls to the right even though i fight it I posture well to try relieve myself from discomfort and pain but nothing helps im 137lbs and 5'1 I exercise and stretch and am always moving but it takes its toll on my back lower and between the shoulder blades I'm really strong for mysize so what gives what can I do where do I go for help before whatever's wrong gets me down and I critically can't get up





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I also swell in my lower legs feet forearms aa well as fingers and hands I become very weak as if I had poor circulation but test all come back clear or negative on sugar blood ect.

Oh and I get this sharp tightening stabbing pain that shoots and locks up my neck on the right side at times don't last too long but long enough to make me react then poof its gone then my neck stays sore for several days like whiplash

I was diagnosed with CD after a couple of years not knowing what was going on...began with my neck pulling to the right and gradually got worse especially when I walked.Using my hand to push my chin to the centre was how I sort of got by. Meds have been muscle relaxers and carbomazepine, not much change in symptoms though :(





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HI I have had cervical dystonia for over a decade. My head pulled to the left and I suffered constant head shaking. It make me very introverted. I tried every therapy recommended and the best that happened was the Paleo diet diminished it significantly but the dystonia was still very strong. Then I discovered NCR. Developed by Dr Howell, it involves precise body work followed by endo nasal adjustments determined by specific stability tests. The endo nasal adjustments involve a balloon being pushed down one of the three nasal cavities in either nostril and then being briefly inflated. This adjusts the sphenoid, the bone which balances the head on the spine and influences in the cerebral spinal fluid system which, as well as being the fluid which nourishes the brain, also travels down the spine. This sphenoid adjustment has a profound affect on the neurological system. I cannot do the technique and its impact on dystonia justice in a short paragraph, but within my first 4 treatment block the dystonia reduced by roughly 80%. It is advised not to do the treatment more than once a month to allow the body to adjust and absorb the ongoing effects. I am half way through my second treatment and my head is nearly centred, mostly it is still and I am astonished at the recovery in such a short space of time. I am writing to you because I wish somebody had told me about this years ago. Here is the website where you can contact practitioners http://www.ncrdoctors.com/ and of course you can also google local ones. I live in Australia and am fortunate to live near the only practitioner in the country, in the Bryonshire region.





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Hi Neal, I live in the Tweed region and was hoping you could tell me the name of the practitioner you saw in the Byron region. Brenda.

Hello , again its Sue , sorry for my grammatical errors In my Little write up, but it's the nature of the illness , I shake when I write , please please ask your GP for a referral , as you all say so proudly , when you have a name for this illness it seems to ease the burden , again my heart is with you all , it's dreadful , but try and smile SUEX





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Hello everyone , I've read all the above , I'm a youngish 61years , I was born with CD as you all call it , lived with it , will die with it...........when I was 2 years of age , my sisters who pull me off a swing , when I was happily upside down , run me to mum, saying mum mum, come quick Sues having a fit , nonsense I would pound them with my hand and cry , they seen what I did not , a shaky head , whilst in different positions , a child mad on swimming and sport , to me to higher levers , most of my younger years my mother tried in victories like hospitals to find out what was wrong with me , to no avail, but Katherine Hepburn was diagnosed with it , but Shrewsbury Shropshire was to far away from the class and wealth of America , when you think it was known all those years ago , we are still very much in our infancy , I cry every day , not bo ho, but just cry , I think I have medals for it , it's not until CD meets the sometimes cruel word , that it gets worse , that trembling of the hand in public , yes the fact your laughter is the loudest when your happy, but someone soon shoots you down , I've never found anyone who unstandardised me , I started a blog 250 blogs called/, my head on the blog AUDIENCE WITH DYSTONIA , my nana name incorporated with mine , Google it , it's my life story ish , it remains unfinished as my I pad went down and my husband as demncia , it's so hard for me , I achieved a Michelin star BB ,throught pain sweat tears and happiness , but the most wonderful thing is I swam throught it, it's the only thing that helps me , even though I still shake off the pillow, I'm never free from stress, no help , just pills and injections, the best person in my life is my consultant who discovered when I payed private 15 years ago , a long time coming hey ! And the DYTONIA GROUP at the EMBANKMENT LONDON , the ladies their one particular one help me so much , but they are all good , I have secondaries , my voice box and my stomach jump, after a hip replacement my leg jumps in the night, The bottom of my spine down my right leg burns with pain , and my hand tremble since I was young I couldn't hold a cup and saucer with out the clutter clatter, yes everyone makes their own I am doctor decisions decisions I'm sick to death of them they know nothing they've been nowhere they've not travelled and they just nobodies , who are rude and I've been a guinea pig all my life , but I least I know it, before I sat down attending endless go visits , they were writing out prescriptions for anti deppressants , IVE had my private health papers disgusted outside work , by the receptionists , and when I moved GPs, my GP said only a year or so ago , she's never heard of it, neither had the nurses in hospital where I had my hip replaced disgusting ! MY SAYING ONLY ! You can't put your brain in a wheelchair ! I quitley raided thousands to spencer the brain for years , but no one listens to me , I really hope this helps , if you go ont my blog , written down the sides is the rest , or ask google to open it for you until I buy another pad , it's about everything , but at times you will say O MY that's happened to me , thinking of you all with my heart SUEX





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I have had symptoms of CD since 1998. I was not diagnosed until 2004. Went to many doctors and tried many meds. Mine started with burning pain in the lower back of my head. It became so severe it was hard to work. (I had an administrative job ). The stress of driving was the worst after working all day. It felt like sitting and driving was pulling on my spine and neck. I felt like I would almost pass out from the pain. Bending over would make me nauseated. The top of my head would also burn and when it would subside would feel as though someone hit me with a baseball bat. The stiffness in my shoulders/neck was severe. I've also had about 3 episodes of Torticollis. Very painful. That was at my worst. Meds didn't help except for at least 50 mg. of Paxil which decreased the nerve ending pain. I still take this. I was tried on antidepressants before for pain but not a high enough dosage to see that they really do work. Botox didn't help. I decided to take the epidural injections. Two rounds. Six months apart in 2007. I gained about 15 lbs from it but the results were amazing!!!! I since lost the weight. Except for slight tremors I lived normally until I went thru a traumatizing divorce in 1010. The stress was overwhelming. Symptoms started returning and tremors much worse especially when I would get tired or upset. I remarried in 2012 and don't work now but started doing more physical activities outside. This totally has destroyed my muscles . Tremors are horrible. So I know now heavy lifting and repetitious movement make negative impacts on my neck and shoulders. I may have to think about another round of epidural injections.





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