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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. 78 People

    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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    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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    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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    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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    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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    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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    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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    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...
    sugarcakes143 sugarcakes143 18-21, F 4 Responses Apr 30

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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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    Anyone else here get headaches

    that lasts for days, weeks???
    sugarcakes143 sugarcakes143 18-21, F 1 Response May 4

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 Aug 2

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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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    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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    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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    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...
    sugarcakes143 sugarcakes143 18-21, F 2 Responses Oct 18

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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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I have had an abnormal cervical screen result which resulted in treatment. Since then last year I had a normal screening result but was diagnosed with high Risk hpv. I never...
    MysteriousCreature MysteriousCreature 26-30, F Oct 21

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    I recently had a PAP exam since I hadn’t had one since November 2012 (oops…). It came back abnormal with ASCUS (precancerous cells) and HPV Positive. They have set me up to...
    cjengland cjengland 22-25, F 2 Responses Oct 6

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    Mornings like this I wish I didn't have to take meds prescribed by doctors just so I don't have to feel anything. All the bad side effects are getting to me. I wish marijuana was...
    vanessamoomoo vanessamoomoo 22-25, F 1 Response Oct 4

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    I was just recently diagnosed with cervical stenosis at the c5c6 level. It's been compressed to 7mm. I have a herniated disc that's causing it. I also have degeneration that's...
    swan88 swan88 31-35, M Oct 9

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    And I don't really care. I honestly feel like people who are waking up every morning feeling sick, because they were hoping their diagnosis was just some terrible nightmare may be...
    LameGames LameGames 18-21, F Oct 21

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    My family drives me to the point of suicide. I know that suicide is selfish, and I'd never commit suicide. but they think I'm being manipulative, the moment I say how I feel, after...
    Luckycharm2014 Luckycharm2014 18-21, F 9 hrs ago

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    As you all know there was a man in my life who persecuted me and made my life a living hell . I wish if I was a talented author to write the whole story with all the details but...
    lostsouluk lostsouluk 31-35, F 4 hrs ago

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    Life seems to be an endless game of trying to impress people. It's as though you can't just be yourself and who you want to be, but here on EP, I find myself in a safe haven. A...
    Kymir Kymir 18-21, F 38 mins ago

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    I have no real people to turn to. The internet helps though. people on the web are the nicest I have ever met and they help me. talk to me, but its not enough. I want to be able to...
    ShhhAnon ShhhAnon 16-17, F 5 Responses 18 hrs ago

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    I have five alters that I keep in check for the most part, one of them has been acting up lately because he represents my sexual side and my dad's girlfriend's son is hot, add that...
    idenmarshals idenmarshals 18-21, M 1 Response 16 hrs ago

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    So it's not really something i have... But this just annoyed the **** out of me. Soo i took the past like 35mins typing out my experience. Okay, i understand it was a mature topic...
    white701 white701 18-21, M 16 hrs ago

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    My professor pulled me aside after class and asked if I have a medical background (cuz it shows in my presentations). I said I don't have a professional background but I...
    Terrain12 Terrain12 31-35, F 11 hrs ago

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    Trust... When someone you trust hurts you they have no idea how you feel. How bad the hurt is by what they have done and how ultimately betrayed you feel. And let me tell you...
    Jenezebel Jenezebel 26-30, F 9 hrs ago

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    Expectations. We all have them. Talking to mentor. He says dont expect nothing from people. Me says why not expect truth and decency. Him says they will disappoint...
    Livyn4pals Livyn4pals 46-50, M 8 hrs ago

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    I have a few in another state, but they are always busy, so they never have time to talk to me. When they do talk to me, I get the vibe that they could care less if I never spoke...
    anonymouslymysterious anonymouslymysterious 16-17, F 1 Response 6 hrs ago

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    Now my sons are going through it...and I don't know how to help them.... My ex husband threatens suicide on a regular basis ...(and yes, he does have professional help, who he can...
    chancemeeting chancemeeting 46-50, F 6 hrs ago

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