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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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I'm 19 and was diagnosed with Cervical Dystonia following a subluxation of the C1 bone in my spine because of a car accident March 2013 and the past few months it had really been improving, my moods with it! I had two lots of Botox injections over six months after having halo traction. Now that it's getting colder and I'm finally back at college, it's getting worse again, and fast! I can't exactly remove the stresses of college to ease the pain, and can't go into college under the influence of tramadol, morphine, or even diclophenac when the pain is above a 5/10 as I bet most of you have been on these medications for the illness and know the side effects! So was wondering if anyone has any tricks that aren't the obvious ones (which don't seem to work anymore) being heat packs, scarves, sensory tricks, exercises being both strengthening or stretching, and sleep! I'm worrying now that I'll be kicked off my college course because of absences, and obviously that stress is just adding to the pain, tilting and stiffening of my neck! The muscles are starting to feel hard in places again and can't be massaged out anymore. Feeling like I can't win. Thanks in advance for any help!!





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try accupuncture / accupressure. I dont know where you live but i know a good one in colorado. She is a young female who will totally relate to your problems. She releived alot of achiness and stess from me, I have trouble controlling my neck muscles, still dont know why.

I was diagnosed with Cervical Dystonia about 5 years ago with my neck pulling my head to one side, but only slightly. I am 41 years old and I have been taking Botox which stops the pain but recently I am finding that head tremors are getting quite bad and find they occur more often now even in situations I am comfortable with. I must admit that I am stressed and Anxious also which I am sure does not help and find that my whole neck feels tensed up. I am planning another trip to my GP to see if anything else is going on because of the sudden change with the tremors. Might be worth mentioning that my mother who is 60 this year has suffered the same for 20 years, and now cannot keep her head still, so I am understandable worried about the future.





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i have st (spasmodic torticolis ) also, i get musle pains in my arms past few years now, does anyone else get this? and how do you help the pain? the only way ive been helping it, is to put a warm ted on it that i put in microwave and put it on my neck, it eases the muscles, ive had st now for 14 years an i find it gets worse by the year, more so in cold weather, if any one got any good tips on how to handle the pain, other than way i have been doing, please let me know ....

I started suffering from Cervical Dystonia about 10 years ago and so may be able to give some advice. In my case then I have the usual three monthly Botox injections which are more effective if I buy a needle which plugs into the box that my neurologist has and gives audible feedback when the needle is inserted into a dystonic muscle in my neck. It's worth the money (about $30 here in Prague) to make sure that they inject the right muscles. Then the other major beneficial treatment is Rivotril, which is an anti-epilectic drug but works to reduce the random messages that my brain is sending to my neck muscles. The other treatment which helps when I'm having a "Bad Neck Day" is alcohol, as recommended by the head neurologist. It seems like an odd recommendation to give but it does work. I also notice that if I'm hungry then the symptoms get worse, so try to keep myself relatively full all the time. Not with junk food but a banana or two usually does the trick. Finally, carrying heavy stuff (shopping, for instance) will set my neck off, so I ask me friends to carry anything heavy for me. And that's when you get to know who your friends are. I hope that helped. Cheers and best of luck in love and life. Will

have severe dystonia thru out my whole body. I am 59 years old .I am concerned that my whole body is going to stay permanently twisted can this happen?





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I was diagnosed about 2 years ago. I suffered from a pinched nerve about 15 years ago and the CD may be from that. I am 65 so people just assume itis because I am OLD! I am so sorry for all of you, since most of you are much younger and suffer with so much pain. My hands now shake also especially when I am stressed, and who isn't stressed. I hope there will be more awareness of this illness and less stigma. I also have fibromyalgia which is also misunderstood. God bless you all!





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had a stroke 2yrs ago was recovering well, had a uti first ever ok after then this started with a pain in my arm stroke side now its really bad, what could have caused this, uti, antibiotics,stress, I don't know, pain 24 7.





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I'v had CD now for over 10yrs, was receiving Botox every 12wks for the last 7yrs but my body has now come to reject the injections. I honestly never realised just exactly how much relief & how much off a normal life these wee miricle jabs gave me until now. My life has dramatically changed in every single aspect off it. And it's even spreading all through my body rapidly since Dec 13,,, so hate this thing x





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I have been diagnosed with cervical dystonia at least 10 yes ago , it started with knots in my shoulder area and the pulling and jerking of my neck I had no pain I was embarrassed the botox injections helped with the jerking then I had no insurance for afew months and I began getting spasms in my neck so severe I could hardly move.I went to a chiropractic and that brought temporary relief when I went back to get botox injections my body was resistance to it .I now take a muscle relaxer and pain medication a chiropractic can help too.What helps is my husband will stretch my neck as far from side to side to keep me from staying stiff.heat helps massages help if you can afford it.there is a massage called myofasha release it is good deep message.

I was diagnosed with cervical dystonia a couple of years ago after a car accident. The GP originally thought it might be Parkinson's and I was was sent to a neurologist who diagnosed CD and prescribed Botox injections. The Botox injections work very well for me, better than the muscle relaxants but I need them every 3 months. In addition to involuntary neck movements and pain I suffered from incredible fatigue and anxiety. The symptoms are worsened by stress. The Botox has helped with those symptoms as well. It takes a great deal of skill to administer Botox, ensure you are getting treatment from a neurologist who is very experienced with Botox treatments. Insurance companies are reluctant to pay at first, you must be persistent. Hopefully researchers will find a cure for this disease, from what I understand it's not particularly well understood. Good luck.





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i'm 37 and have had cervical dystonia for 2and half yrs! tried botox but doesn't really help, should I try deep brain stimulation? or would it be better to get the nerves cut?





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Sorry, I forgot to answer how long it lasts. The actual Botox will stop blocking the Achetelone in about 3 months which will allow the other muscles that are overacting to relax. If your symptoms don't get better within 4 months, then something else is going on. My docs had the same reactions & dismissed my concerns. That changed when they saw me have an intense spasm-freaked them out! Would have been funny had I not felt like I was going to die. :) I've lived with this for 20+ years. If your docs don't take you seriously find another doctor. I ended up in a movement disorder clinic at U of CO Hospital who works with dystonia and Parkinsons patients & he's amazing. He's still baffled how to treat all of my congenital spinal problems, but he does everything he can to help my dystonia.





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I have just been diagnosed with Sasmodic Torticollis Dystonia, I feel like my life is over, I have been off work for 2 years and in a wheelchair as I needed a total hip replacement and just when I thought I could get back to work and out of debt I started having violent neck spasms that are so bad because my neck turns so violently I feel like its going to break, I am so depressed and constantly tired, I just don't know what to do, I've already nearly lost my home because I'm behind with the mortgage, now i have to apply for DLA again, but have been told i probably wont get it because not enough is known about the condtion for them to take it seriously, I'm nearly 53 and feel like an old woman who never goes out, i've had to give up driving,I have panic attacks and its to dangerous to go out on my own because I can't look to cross the road, i have terrible mood swings, i was such a happy person always joking, but now I really don't know what to do! Please can somebody give me some positive feedback as I feel like I'm dying inside !





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