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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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Please everyone most dystonias are caused by tmj disorder see a tmj specialist there's also a clinic in Korea you can find it on you tube Korea tmj disorder cervical dystonia) I've had cervical dystonia for about 10 yrs saw the damn neurologist who told me my fate and then I never went back to him I made my home a sanctuary away from stress away from everyone and I got 45% better however now that I got diagnosed with tmj disorder it makes perfect sense so I'm about to receive my oral device and hopefully all my symptoms should deminish if not all at least to 80% I would be perfectly happy





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Hi, after suffering SEVERE stress and mental trauma I began to experience neck problems. My neck started to pull over to the right side and was accompanied by very painful muscle contractions. After endless tests, 2 m.r.I. scans, a course of physiotherapy and after being prescribed endless pills I finally got a diagnosis a couple of months ago. This took just over 3 years and 3 weeks ago my neurologist gave me botox. For the past week I have been experiencing heart palpitations, breathing difficulties and tightness in my chest. Also feel very anxious and nauseas. I am now seriously considering not having any more botox as at themoment it feels like the cure is worse than the Illness.





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Hello. I started with head and neck issues some six months ago. Prior to that I had never experienced any problems at all. I am a male in my late forties and very physically fit. I don't smoke and only drink occasionally. My problem started with a slight head twitch to my right side. I knew I was doing it but ignored it. A few weeks later I approached my doctor who said it was nothing to worry about. Weeks later my head began to pull to my right side. This followed painfull muscle spasms in my neck with muscles locked tense. I tried a chiropractor and that was a waste of time. My physio is great and when he noticed my head tremour last week he said I must return to my doctor who has now referred my to a neurologist. I'm really scared and apprehensive and have never been so worried about what is happening and how it now rules my daily life.





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Hi,i have had neck dystonia for several years now which is treated with botox every 10 weeks.I have been having a lot of trouble with my right arm.I have mentioned it to my nurse but haven't got an answer just a could be.I need to get this sorted as my day to day life is being affected eg like dropping items and grip.Any advice welcome. thank you Pheona





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I am waiting to go and see a neurologist, as I believe I have this condition due to my own online research. Does anybody know of any medications that may help? Or any exercises and coping methods? Thanks in advance .





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Hi I'm a 54 year old woman and have suffered with dystonia for nearly seven years it was great to read all your comments and makes you realise your not alone. Hi highly recommend anybody to join the dystonia society I subscribe to it every year it is hardly any money and the help they give you with advice on benefits treatments etc etc is the best and there is always someone on help line if you need them www.dystonia.uk.org





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Hi I'm a 25 yr old male I've been getting this for over 7 years now and been to embarrassed to go to the docs incase he thought I was crazy but now I have researched it. It looks like I'm not the only one to have this horrible curse what is taking over my life my head keeps going side to side an back an forth it's a nightmare





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I've been suffering with this for about ten years now, and like most people who have commented then I also have the three monthly Botox injections. One drug which really does help is Rivotril, which is an anti-epilipsy drug. I didn't see it mentioned here which surprised me. That's the brand name but the generic name is Clonazepam I would highly recommend that you ask your doctor about it since it is the standard drug prescribed for CD here in the Czech Republic but maybe your doctor doesn't know about it. And you should really ask to see a neurologist about this condition because most doctors are unfamiliar with it.





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I am so happy to see that i'm not the only one for whom the symptoms happen when I lay down. My neurologist said he'd never seen a case like mine where the spasms and twisting actually occurs when any part of my head or neck touches anything. My symptoms started in feb 2014 and they progressed very quickly and I was diagnosed with cervical dystonia in feb 2015. I have been prescribed a non addictive sleep aid called zoplicone 7.5mg, so no more laying there for hours in agony with neck spasms, until the exhaustion sets in to finally fall asleep. This drug leaves a bad taste in your mouth the next day until you get use to it. No day after groggyness. I just had my second round of botox which stopped the twisting but the muscles still contract and stiffen when I lay down. I also find sitting in a soft chair triggers the spasms. He assures me that the symptoms will decrease with every treatment. I must say that not being able to lay down and watch a movie or even lean my head on my husband's shoulder is frustratin. But after reading all the ways that cervical dystonia affects people's daily lives makes me feel like it could be worst.





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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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I think you are on to something here. My wife was just diagnosed with cervical dystonia and received her first botox treatment on December 3rd, one month ago, we just tried your recommended sternocleidomastoid neck stretch, and you can feel the stretch on that important neck muscle as soon as you sit in the chair and start pulling to the side while your head is looking up. We also stretched her trapezoids by her standing and pulling her head down while i kneeled behind her and locked hands and pulled down on her arms for a good stretch. She said that felt good. Then, i pulled her arms down and slightly inward to the middle of her back while she looked up.to the ceiling and pulled her head as far back as she could to contract the back muscle. I am hoping this exercise can build up her back neck muscle. Your post inspired us to build a physical therapy workout routine based primarily around these exercises. Last note, i was able to avoid a shoulder surgery due to a dislocated shoulder by a strict therapy routine. Physical therapy will be our next step.





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