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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 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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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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Hi everyone, Does anyone out there have fibro and CD? I've been struggling with the fibro since 2008 but I kept working as a bookkeeper taking days off here and there and then the CD started slowly about 2 years ago and then just totally took over my neck and shoulders and I'm not handling that too well. I've had Botox twice and it helps but as soon as I get anxious the CD shows it ugly face and the pain comes on again. The fibro affects my arms, at least that's what the doctor says so I can't pick them up sideways like when I'm putting on my coat it's very difficult and then if I pull, push or pick up it strains my neck and the CD gets really bad.





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Hi all, I read all your comments with interests, I have been receiving treatment for Cervical Dystonia for the past 8 years every 3 months I have Botox Injections to help control it and in the main they do ease the symptoms although they never completely go away, but without them the pain can be unrelenting, not to mention how weary and tired the condition can make me feel it's a constant battle, Like others I find walking worsens the spasms as does driving but use ticks to control it. Like chin touching, and singing (Oh my poor neighbours :), also covering my right eye with my hand brings total relief but I can't walk about doing that all the time, but when I do that I am free of tremors and twisting, not sure why that works though. I was interested to read about cutting out certain foods and adjusting my diet, think ai might give that a try next, I didn't realise certain foods can make it worse and by cutting down on them the symptoms can improve. I will keep you updated on the results I refuse to give into this life changing and painful condition and live life to the full, colleagues at work know about it and are used to my head tilt and accept it as just being a part of who I am. It's a condition you either accept and live with on a daily basis educating others who don't understand or you hide away, I know which option I prefer. It does get me down of course it does, and at times frustrates me to the point of tears, but then I get angry at myself for letting it get to me, I'm stuck with it so I'll deal with it a day at a time 😀





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Hi all. I been having this pain in my neck and shoulders for the past 2years now.I begged my doctor to do whatever tests out there to find out what is wrong with me.she swears I have migraines but I tell her,the pain feels like a stiff neck 24hrs a day along with me having to constantly stretch my neck and move my head around fast.it's so embarrassing in public so I took it upon myself to find out what was wrong with me.I came across this site and I now know what I have. I have a Dr. appt on Feb 5th but wanna know what I can do in the mean time for the terrible pain. I feel so happy now that I know there's others out there with my problem.I felt like an alien and try so hard to hide my ridiculous head movements.





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Hey Camille i had the same issue when i was diagnosed 3 years ago gps and doctors weren't taking me seriously when i said i had a neurological problem. I had to almost beg my gp to refer me to The National Hospital for Neurology so that I could see a neurologist. When I did, he immediately diagnosed the problem after I explained the symptoms. I get head movements too and can't sit still due to this but head movements and stiff neck are almost certain to be Cervical Dystonia. The neurologist will then be able to try out different methods such as medication/s, physio, therapy and/or botox.

Hi, I know how you feel and its not nice feeling like that all the time. I have cervical dystonia and have been getting Botox injections since around 1997, they do help to reduce the spasms after about 2-3 weeks and can last for about 6 months. I have tried loads of different medication over the years but with little or no success, I have also been to reflexology treatment, again no success. Sensory tricks like touching chin or back of head does seem to stop the tremor, but you can't spend the rest of your life walking around like that. I have found that massaging the neck muscle at the base of you skull does relieve the dull ache. I have also found that alcohol can help to stop the tremor but can't walk around drunk everyday, but at social events I find that a couple of beers or rum and cokes help you feel more social and more "normal" also avoid caffeine tea/coffee . Only drink caffeine free, that does help a little. I have found a brilliant consultant at bury at Edmunds hospital who trying injections every 3 months now rather than 6 -9 months at Ipswich hospital.

Hello there! It's a relief to see that I'm not alone here with this condition! I was officially diagnosed this year by a neurologist. It was also interesting to read about diet. I haven't tried that yet but I will. It's a vicious circle because stress can trigger or exacerbate dystonia. But the stress is made worse by having the condition! The last few months I haven't wanted to go out socially. Even going to a supermarket is stressful. Walking makes my spasms worse. However, I found dancing almost relieves the spasms! My advice is to pace yourself - try not to do too much in one day and try to rest in between activities. I'm waiting for my second round of Botox (the 1st helped a little) and continuing my neck stretching exercises. I use sensory tricks a lot. I also try to avoid stressful situations where possible. Lying down with a wheat bag round my neck helps with my pain. I hope this helps.





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Hi Natasha this sounds very familiar to my condition and you are right stress does make it worse. Have a look at my comment about how diet and anticholinergic medication (Trihexyphenidyl) have helped me significantly. I think you may benefit as your dystonia sounds very similar to mine. I too have had a lot of trouble socially and just going out in general. I also find dancing helpful as long as its not strenuous and walking makes spasms worse. I still have these troubles but significantly less after the alteration of my diet. I've had physio too but i didn't find this anywhere near as effective.

No problem glad to help. I haven't completely stopped consuming these foods (apart from egg yolks as the choline level is too high) but i have significantly reduced my intake. I use the content chart to monitor my intake - it tells me the amount of milligrams are contained in these foods. Since milk, egg yolks, red meats etc have a higher amount I have reduced the amount I consume every day so that i don't exceed a total of (roughly) 200mg of choline daily. For example if I have chicken during the day I make sure its not too much and that I don't have a lot of milk nuts and cheese (for example) for the remainder of the day. Hope that makes sense. Its pretty amazing that you had a remission for 10 years - was there anything in particular that was helping you? I think you should definitely ask to be referred to a neurologist and ask for a higher dosage of botox - 50 units is tiny! Some medication/muscle relaxant should help too. I get 6 injections of botox into neck and shoulder muscles totalling around 1000 units. Used to be less but i asked my consultant for more because I was still suffering. I'm not part of any support groups as I'm not sure what else could be done to help I've tried pretty much everything except surgery, so I take it upon myself to be in control by being healthy and avoiding the consumption of too many acetylcholine-inducing foods.

Hi guys, I'm 21 and was diagnosed with CD aged 18. Symptoms began when i was around 8 years old. My symptoms were severe around 18, and would peak whenever i had A Level exams - a.k.a stress. I have botox every 3 months, and take 12mg of Trihexyphendyl daily. I find this really helps calms down the symptoms however I still find it difficult to cope. About 6 months ago I was able to work for 2 months when symptoms had miraculously almost gone. I was travelling and talking to people face-to-face for a living - something i never thought would be possible. Before working, I had discovered that diet had a major part to play. For those who don't know Trihexyphendyl is used as treatment because it is an anticholinergic - a substance which blocks the neurotransmitter acetylcholine. I found that almost all food contains "choline", which when consumed is converted to acetylcholine. Certain foods contain more than others. Foods with a high amount include egg yolk, milk, nuts, most cheeses, beef, chicken, and foods that contain a large amount of saturated fat. Foods that include less are white rice, white bread, pasta, noodles, fruit and vegetables. A table of choline content within foods can be found if you simply search "choline content chart" on Google. This chart allowed me to monitor my daily intake of choline and begin to make wise choices to better my life. I began to notice a difference after a week. I stuck to this plan, whilst incorporating light exercise, and for the first time in 2 years felt ready to apply for work. Not long after, I was in full-time work, with symptoms that had almost vanished. It is neccessary to point out that injections and Trihexyphenidyl were also essential, and had to be combined with my healthy diet plan in order for my symptoms to be under control. However symptoms became severe again when the effect of botox began to run out (i had to wait 4 months as my hospital couldn't give me an early enough appt), I wasn't getting much sleep and I got too comfortable eating foods that were not part of my diet plan. Although I was devastated that I had to leave, I learnt the biggest lesson of my life, and am very content knowing that by re-appying this combination - botox, Trihexyphendyl, consumption of foods lower in choline, incorporation of exercise, adequate sleep and low stress levels - I can gradually get better again. I hope that someone out there can benefit from my story.





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Hi, I really want to know more about how diet has made an impact on your dystonia. What are you eating? I have had CD since 10 years now, and it started when I was 18. I have not tried any medicine per say but the botox along with the Physio exercises is working well for me. I also find that the pain is not i intense when i am having a positive day, e.g when I have made an effort with my outfit and hair. Please reply regarding diet and suggest meal plans that have worked for you.

Hi Sarah, thanks for messaging me. You're the 1st person with this condition that I've had contact with. I just wondered if you've completely left out foods like milk, eggs and chicken or just eat less of them? I actually got Dystonia in 2002, was in remission for over 10 years then came back last year! The 1st time, I had spasms in right side of neck & managed to sort it myself by exercises. This time it's in left side Trapezius muscle. The physio's in Essex either don't know how to treat it or won't take me on at all! This whole thing does get me down. I returned to work 3 weeks ago after over 2 months off sick. Do you belong to any support groups? Also, do you know the strength of Botox you have? I had 50 units in November but it's not strong enough.

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I have just been diagnosed with dystonia...is started with a speech problem 18yrs ago...now it's move to the two last fingers on my left hand. I just had my first injection of botox on Friday....seems to have helped my pinky finger....but not my ring finger..seems to still want to stay bent...makes it very hard to work in my field of Office Admin as my typing speed has been affected....feel discouraged





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