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I Have Cervical Dystonia

Cervical Dystonia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Cervical Dystonia. You're not alone. 79 People

    I was diagnosed probably 8

    or 9 years ago. I was working as a Medical Assistant and my (then) husband could not understand the problems I was having at work. It got to the point that I could no longer handle giving injections, partly because of the stares I would get and partly because I also have...
    michjulian michjulian 41-45, F 2 Responses Feb 11

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    I have dystonia and have had it

    for 4 years now. I started really bad tremors and at first my doctors thought it was seizures but I finally was diagnose with dystonia and I lost my job as an engineer for the railroad . I work at a warehouse now but it is hard. I take xenazine and some sort of muscle relaxer. I...
    frankyarbrough frankyarbrough 36-40, M 3 Responses Apr 22

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    Cervical Dystonia

    I have a brain tremor, my head turns to the right and when i try and turn it back straight my head starts shaking side to side like when you are shaking your head to say no. I have been to see a Neurologist, he said there is no queer, the only thing that will help is Bot ox...
    june58 june58 51-55, F 1 Response Oct 25, 2009

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    It's not fun waking up every day with chronic

    pain. Every day I experience chronic pain, which I can only decrease as much as 20% sometimes, but I always endure pain. In 2011, I started to experience neck and shoulder pain. Having worked in an office environment for many years I experienced this often, and booked myself...
    GroundedButterfly81 GroundedButterfly81 31-35, F 1 Response Feb 10

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    Cervical Dystonia

    I was first diagnosed with Cervical Dystonia around 2007.  I spent years prior to this going to physicians, acupuncture, chiropractors and massage therapist.  None with any help.  Actually seeing the Chiropractor made it worse.  The pain was incredibly intense when he...
    abigail505 abigail505 36-40 5 Responses Mar 23, 2012

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    20 Years W Dystonia

    I was diagnosed with Dystonia 20 years ago. It was a really rough first two years. Then Botox became available and I've been getting injections ever since. I also had selective denervation surgery about 10 years ago. That was a real life changer. I still get Botox and take...
    rootie00 rootie00 61-65 Jul 10, 2010

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    Shane Here I Have Cervical Dystonia I Invented A Neck Brace For Torticollis,dystonia ,shanes Brace

    I have cervical dystonia also known as torticollis, it was caused from a serious side effect from a medication called resperadol ,the doctors would not put me in a neck brace they said it would make my weaker from restricted movement, thats true , after years of discomfort ,and...
    shanesbrace shanesbrace 41-45 Feb 16, 2011

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    Family History, Now Hopefully Helping The Future Through Research

    My great aunt had dystonia, diagnosed from age 13 or so.  She maintained a lot of independence and lived on her own in a rural mountain area for most of her life. She was and still is an inspiration. Now I have an opportunity to help people with cervical dystonia...
    allyce allyce 26-30 1 Response May 18, 2010

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    Anyone else here get headaches

    that lasts for days, weeks???
    MeowOnMe MeowOnMe 18-21, F 1 Response May 4

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    Here we go... Another night filled with pain,

    agony, and no sleep... It hurts so much. I can't stand it anymore. It makes me miserable. They say that most of the pain goes away with sleep, and you don't feel as bad in the mornings. Which sometimes, I find to be true... But, the hard part is... How do I even get to sleep...
    MeowOnMe MeowOnMe 18-21, F 4 Responses Nov 8

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    Help With These Spasms!

    Hello everyone! I'm new here, was searching out the Lyme Disease and Dystonia groups for some assistance For over 6 and a hlaf years, I've endured the mystery of Dystonia, (neurological disorder,) seizures, heavy metal poisoning, (from improperly amalgam fillings,), lead...
    anitaivetteferrer anitaivetteferrer 56-60, F Sep 9, 2013

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    Cervical Dystonia Changes My Everyday Life.

    I was diagnosed  in May of 2001 as a result of an auto accident with Cervical Dystonia.  I have seen 5 specialist who all say find a job that requires no use of your hands.  The more movement and  use of your upper limbs and neck will cause your more trouble...
    cnrcwe2009 cnrcwe2009 31-35 9 Responses Nov 1, 2010

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    Pt And Dystonia

    Why is it when you get into a car accident and injure your lower back and they find out you have dystonia they automatically tell you that is the problem? The herniated disk that's putting pressure on your spinal cord isn't the issue. I'm going to stop telling people that's what...
    Shedevil5924 Shedevil5924 36-40, F 2 Responses Jun 21, 2012

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    Dystonia

      I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder. I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns...
    dystoniadisease dystoniadisease 66-70, M 4 Responses Nov 9, 2012

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    Dystonia Not Fun.

    Spent years complaining of pain to my chiropractor and doctors. Went to surgeons and physical therapists and nothing helped. One surgeon sent me to a myofacial clinic where they finally told me my disease. I cried cause now I knew I could fight it. Just wish there was a cure...
    Shedevil5924 Shedevil5924 36-40, F 3 Responses Jun 20, 2012

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    Is There Any Releif?

    i was diagnosis with cervical dystonia.. i never heard of it before and i have not seen anyone with it.. so am i the only one that has it? i hate it  cuz i shake all the time and seem i can't write either..  i find it when i meet people it is worse but when am home i don't...
    tigerandbears tigerandbears 46-50, F 4 Responses Oct 6, 2012

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    I'm 19 years old, and have had cervical dystonia

    for about 6 years now, which means I was about 13 years old when I got it. I was only diagnosed with it about 4 years ago, so I went 2 years without knowing what I had, since no doctors could figure it out, until I finally found the right one. The doctor has no idea how I could...
    MeowOnMe MeowOnMe 18-21, F 4 Responses Apr 30

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    When I was in my mid 30's I was driving my car &

    for the first time felt my head shaking (no-no). A feeling of horror came over me, because my fraternal grandmother, "Nana", had a head tremor for perhaps the last 30 years of her life, which became increasingly worse. When she died she was in a nursing home & had quit...
    Needtoconnect Needtoconnect 66-70, F Jul 26

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    Two Lifelong Disorders

    When I was 16 I was diagnosed with Major Depressive Disorder, none of the medications gave me very much relief. When I was 22 the doctors found out why, I had my first manic episode, they rediagnosed my with Bipolar I Disorder. When I was 26, around Thanksgiving of 2009 my neck...
    justwantrelief justwantrelief 26-30 Oct 18, 2011

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    Do Botox Injections Help?

    Hi, I was just diagnosed in July 2009 with cervical dystonia and am feeling very frustrated because my head seems to be constantly turning to one side which I find very embarrasing and annoying.  I have had one small dose of botox injection which did not help at all...
    searchinglady searchinglady 61-65, F 4 Responses Nov 19, 2009

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    Cervical Dystonia

    i have had this condition for 9yrs and only recently found out the name by going to a neuroligist.had an mri but have'nt got results as yet.Also seeing a chiropractor , but he wants to see me 3 times a wk and says it can take months to fix neck but i feel terrible after his...
    jodom jodom 41-45 Apr 7, 2012

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    Cervical Dystonia With Horrible Headaches

    I have had neck pain and headaches for years. Three years ago the neurologist disgnosed me with cervical muscle contracture headaches. Put on gavapenton and orphenadrine. Went back to the neurologist (different one) two weeks ago and he diagnosed me with cervical dystonia put...
    kjarrell kjarrell 46-50, F 2 Responses Apr 8, 2013

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    I Was Diagnosed With Overpronating As A Marathon Runner- Causing An Imbalance In My Posture

    I was a marathon runner for years, at age 27, my dr told me that my neck spasms were due to an imbalance when I was running. It wasnt until I turned 34- very rough pregnancy, stopped running, and my neck issues had gotten worse. I had a c-section, my obgyn was out of town, and i...
    meganc77 meganc77 36-40, F Aug 6, 2013

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    Glad To Be Here. Hope Thyis Helps

    9 months ago I developed a very minor twitch in my neck. I believe it began after a mountain bike crash but I can't be certain. It didn't seem like aa big deal at the time.Fast forward 2 months. The intensity of the twitching becomes overwhelming and I get referred to a...
    miserablemike miserablemike 56-60, M 5 Responses May 31, 2011

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    so, I started my Thanksgiving off by waking up

    with a headache and in pain... Nothing I did would make the pain go away... It was driving me insane!!! So, I finally was able to find something that worked. I went into the shower and just stood under hot water and let it run on my head/neck - then I let cold water run on it...
    MeowOnMe MeowOnMe 18-21, F 2 Responses 1 day ago

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    Raising Awarness For Dystonia

    I was diagnosed with CD when I was 17 years old. I am now 34 .I have only been on botox and meds for treatment. Which has been the most effective for me. I also sell jewelry as a independent distributor for Premier Jewelry and I am wanting to use my business as a way of...
    mrsoz531 mrsoz531 31-35 Sep 22, 2013

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    What the Heck (neck)!

    Fairly recently, Sept. 3, 2009 I was given a name to symptoms I had as a result of a motorcycle accident May 10, 2008, 'cervical dystonia'. As a result; I felt relieved, because what I already was experiencing had a name. I feel validated. From here, treatments are available...
    paco35 paco35 56-60, M 3 Responses Sep 26, 2009

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    Please, if anyone knows of any ways to help

    cope with the pain, home remedies, something, please tell me. I am in so much pain, I can't take it anymore. I'm at that point where I'm just giving up and losing hope that it's going to get better. I'm 20 years old, and have had it for 6 years and now it's worse then ever, even...
    MeowOnMe MeowOnMe 18-21, F 2 Responses Oct 18

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    Cervical Dystonia Can Be Cured.

    Ive been diagnosed with cervical dystonia 2 and a half years ago. I work in a medical field so trust me ive tried it all. Doctors cant really help you ive tried and botox did nothing for me. So for a past 6 months ive been doing my own research and i come to find out that my diet...
    Rozendorf Rozendorf 31-35 9 Responses Nov 17, 2012

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    1 Year With Cervical Dystonia And Totally 5 Years With Generalized Dystonia (legs And Back)

    Even while i write these things my neck hurts like hell.What i want to say (in fact i don't even know i just wanted to share and ask a few questions.) a doctor i saw just didn't care.He just gave me an exercise paper and told me to do them.I've been doing them for a month.They...
    burakcekili burakcekili 18-21 3 Responses Jan 4, 2013

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    what is the most comfortable sleeping position

    for you??? The only way my neck seems comfortable is when I'm laying on my back... Yet I love sleeping on my side, and it's hard to do this this.
    MeowOnMe MeowOnMe 18-21, F 1 Response 3 days ago

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    I Have Cervical Dystonia Too

    I was in my 20's when I first noticed that my neck was really weak. I started having head tremors in my early 30's and then my head started pulling to the left and I started have more frequent headaches. It took the doctors 5 years to diagnose me. I am now 51. I have been getting...
    tpower1 tpower1 51-55 3 Responses Jun 26, 2013

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    Going To South Korea To Get Cured Of Spasmodic Torticollis

    Hi, I'm a man, 44 years, and I have spasmodic torticollis (= cervical dystonia) since 1 year. I would like to share thoughts about the non-medical side of ST as well. To be more specific: about what the symptoms actually mean. I think that once we can understand why the body is...
    ccd800 ccd800 41-45, M May 1, 2012

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    Dystonia Is No Fun

    Was diagnosed with dystonia about 5the years ago. I love my doc's they are fantastic. The injections are very painful but worth it. Having issues with the head drop and my doc's can't pin point it. I joke with them every time that I'm their human pin cushion. They put muscles to...
    Shedevil5924 Shedevil5924 36-40, F 5 Responses Jun 19, 2012

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    Dystonia At 60

    In 1992 I had an entertainment center fall on my head, I was working at KMart at service desk and was taking a return but the guy let go before I could get it! Anyway I always had problems with my neck but in September 2012 I started getting worst neck started pulling worst, I...
    Yolirodriguez Yolirodriguez 61-65, F Apr 19, 2013

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    well, here we go again.

    ..it's one of "those" nights...when I'm trying to sleep, but then all of the sudden the pain, and the tremors, and the tightness begins. It's not the worse I have had, but it's still effecting my sleep! It sucks - I left my cervical pillow at my boyfriends house, and it won't...
    MeowOnMe MeowOnMe 18-21, F 1 Response 6 days ago

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    I'm finding a lot of info by googling "head

    tremor blog" or "cervical dystonia blog". We are not alone!
    Needtoconnect Needtoconnect 66-70, F 1 Response Aug 2

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    Uncontrolable.

    Last visit with my doctors about my dystonia they told me that my body confuses them. They put the most active muscles to sleep and my brain freaks out and sets other muscles into motion. They can't keep up with it. I joke with them that I'm their human pin cushion. 36 injections...
    Shedevil5924 Shedevil5924 36-40, F 2 Responses Jul 12, 2012

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    My Life Of Hope

    A little over a month ago I started experiencing a lot of dizziness and some paralysis to the left side of my face. I also started having left side cranial pressure and headaches. My symptoms would worsen with moveme stimulation. A couples weeks went by and I had another episode...
    jessdahl81 jessdahl81 26-30 1 Response Jan 8, 2012

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    Related Experiences

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    In 2006 the roof of my house fell on my head, It broke me two cervical vertebrae. In 2010 I had appendicitis, directly to the operating room. Now it's my gallbladder... What will...
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    Let me start with I have a problem. I'm only 19 and I have always been drawn to older women that have a strong personality. I went to job corps and Miss Maria was my 3rd shift...
    patriotslover21 patriotslover21 26-30, F 1 Response 14 hrs ago

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    For the most part, if someone insults me, I can rise above it. I'm usually calm and collective, and realise that the problem is not with me, but with the person hurling the abuse...
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    so this is from the end of my freshman year, it was part of an assignment, but its all mine. my creativity. so here it is: As Juliet sees her body lying on the ground lifeless...
    MaddiJade16 MaddiJade16 16-17, F 6 hrs ago

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    Yeah I have been in hell. I have had my life taken away from me and sent into hell for 3 yrs and it took 5 yrs after just to cope. Dehumanized, captive, mentally tortured...
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    I use to be scared and nervous to talk to people I had a crush on,but now some how I have gotten better at it wayyy better. Anyway my crush is my friend I wonder if she knows I...
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    Due to this a lot upline plan, not only just community excited to work hard at a superior grade, those above you are actually committed also. Uplines be given commission it's...
    Darronbanksso0 Darronbanksso0 31-35, M 1 Response 2 hrs ago

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    ...and I'm still recovering. I used to wonder about my father... how little things could send him into a rage. How his words and actions always mismatched the perceived offense...
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