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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 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.

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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I have had two rounds of Botox and got extremely sick for about a month after each treatment. I ended up in the ER...couldn't eat, very weak, dehydrated. the Botox didn't even give me much relief. I am terrified to have any more. The neurologist refused to say that the Botox made me sick. Any suggestions? I go to PT twice a week but hasn't really helped..also take a muscle relaxant that does nothing. Thanks.





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Hi everyone, my name is Sandra, I'm new here. I'm so sorry to hear you're in so much pain. I'm so excited to finally find others like me. I was in a near fatal car accident in 2000. I fractured my neck, back, both shoulders, head...I've had all sorts of tests done, shots in the spine, but still get these spasms, my head bobble, it's embarrassing when in public. Ppl think I'm having seizures. It gets worse the more I fight it, sitting down helps but laying down is better. Laying on a 1/2 deflated dodge ball and rolling it up and down my back helps. Heating pad also helps. Cold weather and stress makes it worse. Well I wish you all many pain free days. Thanks😊





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I'm out of work, I used to be a bookkeeper/Accountant. Of the people that are working with this horrible disease, can you tell me what your jobs are? I just can't figure out what I can do, I'm just a mess in every way, I'm so confused as to what other people do, how are other people surviving with this. Thanks, Dian





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I am 55 and was just diagnosed with CD. I was assaulted and started having severe headaches and neck pain. I have doctored for over 18 months and I'm just now finding a doctor that could tell me that I'm not losing my mind. I go for my second drs. appt. on the 5th of Jan. and I'm hoping for some pain relief. I don't sleep well due to the pain and my neck pulls to the left; the pain is absolutely horrible. I have had Systemic Lupus since I was 16 so I'm very familiar with pain, but this pain is the worst I've ever experienced. Any information on what they will possibly prescribe me for the pain? Thank you for any information, and best of luck to you all.





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Wow it is so nice to read about other suffers, to know that people are going through the same as myself. I have refused the injections as I have taken so many different medicines as a trail (just see how you get on) I'm a mum of 3 I work full time plus run my house, stress is my middle name and the though of a proper nights sleep is a mere dream, I'm so embarrassed by the shakes and the distortion of my head and neck, i also suffer with my shoulders, both elbows lower back , cannot carry anything slightly heavy , cannot clean anything without being in server pain, windows and mirrors are out of the question. I would love to hear from anyone that could give me some positive feed back on how to cope with the server pain without it involving sleeping tablets or antidepressants. I look forward to hearing from you, thank you in advance.





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Hi Jen, Do you mind if I ask what kind of job you have? I had to stop working a couple of years ago because I couldn't do my bookkeeping job and I have been trying to figure out a job I would be able to do. I just had botox injections yesterday, I find they help with the appearance of the tremors and I can hold my head up better but they are still happening, also when I get stressed they are back. Does not take the pain away.

Over the last 2 to 3 months this horrible condition, which I have been pretty much free of for the last 5 years or so, has come back to haunt me. I don't know if there has been a trigger. I was first diagnosed with ST about 15 years ago, I am now 42. I had botox injections for about 4 years until I felt I didn't need them anymore. Apart from aches and pains sometimes the head movements stayed away for about 3 years before coming back. After another 2 to 3 years the condition went away again. I was convinced I was free of it until it came back recently. I am struggling while I wait for new treatment. I get really bad tension in my lower neck, particularly when out and about. At work I am finding a memory foam pillow really helps when sat at my desk. I am hoping that once again, given time, I can be free of this. Keep posting anything that helps. Thanks Mike





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I have enjoyed,( maybe the wrong description)reading all these comments. I have had st for 20 years and now at 70, suddenly feel less on my own. It is a difficult condition to live with (so difficult to describe and explain)and I had to give up my career at age 50. But I will not give in. Instead I have developed a new life which is quiet, fairly undemanding and I try to avoid stressful situations whenever I can. But everyday is a fight with the pain and the movement and the head that won't stay still. Goodluck everyone with your daily battle. At least you know you are not alone. This helps a lot.





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I have CD, I'm 54 and I can't work. Is there anyone else out there that can't work because this painful disease?





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CD is monster, I have lived with it for 14 years. Yes I have had the injections for 10 years. Good luck to my friends it takes away your dreams, I thought it would be better. No longer to able to work and complete what I wanted to do with my career.

Yes - I gave up a very lucrative career with BT (British Telecom) after 42+ years with them. I am now on a pension from them but find every single day a massive challenge. I have to hold my head to stop the shaking and tremor and also find that when out with my wife just trying to have a walk I have to hold on to her to keep my balance. This 'illness', though not life threatening in the sense of a terminal cancer or such like, has completely ruined my life. Looks like there needs to be some more research into the 'root cause' rather than treat the symptoms like Botox injections which I have had. Brings to mind they used to treat people with mental illness ( which we don't have) by performing lobotomies ( treat the symptom, not the cause). It is horrible. I wish you all the best





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