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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. 80 People

    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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    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 3 Responses Nov 22

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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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    UPDATE: I used the medication (muscle relaxant)

    for the first time last night. Oh man, it worked wonders! I had no neck spasms, no pain, no tremors, at all. I was able to sleep in complete comfort and peace! I had no stomach spasms either! (that's a different issue, but it's caused by the muscles, so this medication helps!) I...
    MeowOnMe MeowOnMe 18-21, F 1 Response Dec 9

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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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    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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    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 5 Responses Apr 30

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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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    MeowOnMe MeowOnMe 18-21, F 1 Response Dec 13

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    All I can do is just.

    .. Lay here. and wait for the pain to pass... No matter how try to sleep, the pain, the tremors, they won't stop. They'll only stop once I sleep, but how can I sleep in such pain? I'm tired of suffering. I'm tired of the pain and the loss of sleep every night. I'm tired just...
    MeowOnMe MeowOnMe 18-21, F 2 Responses Dec 17

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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 1 Response Sep 9, 2013

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    another night of pain,

    tremors, and suffering. again, when I'm trying to sleep. I just want to sleep. That's all I want. and I can't even do that cause of this dystonia bullshit. It's like this every day during the day, but it gets much worse at night. January needs to come fast. I can't wait till I'm...
    MeowOnMe MeowOnMe 18-21, F 3 Responses Dec 2

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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 2 Responses Jul 26

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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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    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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    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 5 Responses Nov 19, 2009

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    Okay, on my way to see my neurologist

    for my follow up. I got my injections a little over a month ago, and I can't get another one for another 2 or so months. But I'm telling him today that the dosage he gave me isn't working. He started me off really low - but my old doctor had me on a higher dose. It isn't working...
    MeowOnMe MeowOnMe 18-21, F 1 Response Dec 8

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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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    Anyone else here get headaches

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

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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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    It feels worse when I lay down,

    but when I sit up, it feels better... Why is that?
    MeowOnMe MeowOnMe 18-21, F 1 Response Nov 28

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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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    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 5 Responses Nov 8

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    If someone can just please take the pain away.

    .. I'd give you anything. I'd give anything to just be able to sleep right now. Just to be able to lay comfortably in my bed. Just to get rid of all the discomfort, tightness, pain...just for one night. I'm so sleep deprived, I haven't gotten more than 1-4 hours of sleep in...
    MeowOnMe MeowOnMe 18-21, F 4 Responses Dec 8

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    I know this question has a pretty low chance of

    getting answered, since I'm like the only one who ever posts in this group, but, where do you guys normally get most of your pain? Mine is mostly around the muscles in my throat, and the top of the back of my head, right in the middle of where the skull and the neck meet... My...
    MeowOnMe MeowOnMe 18-21, F 1 Response Dec 13

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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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    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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    It is beyond horrible tonight!

    !! The tremors are constant, they won't stop!! Nothing I do will make them stop! I'm just trying to sleep, it won't let me...I just want to cry, I'm so tired of struggling. The pain is getting worse each day...there's a whole section of my neck/lower part of the back of head that...
    MeowOnMe MeowOnMe 18-21, F 2 Responses Nov 28

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    Don't you just hate those horrible headaches,

    that feel like the muscles are just stretching and stretching and it won't stop? Like a horrible tightening feeling around the whole lower backside of your head? and then the tremors kick in, and your eyes are burning from exhaustion, but you can't sleep cause of the agonizing...
    MeowOnMe MeowOnMe 18-21, F 3 Responses 6 days ago

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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 2 Responses Nov 24

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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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    Okay, saw my doctor. I actually get my next

    injection next month! He is raising the dosage a lot higher since the first one didn't work at all. He also prescribed me a muscle relaxant like I wanted. :) He told me it's going to make me very drowsy, so it's best to take it at night. I told him that's fine since the pain and...
    MeowOnMe MeowOnMe 18-21, F 2 Responses Dec 8

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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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    horrible, horrible, horrible night.

    As usual. Why am I medication, if the medication isn't even going to last through the night? The tremors won't stop, the pain won't fade. My body is so weak from exhaustion, my eyes are burning cause of how much I just want to sleep, but I can't because of this pain. I don't...
    MeowOnMe MeowOnMe 18-21, F 3 Responses 4 days ago

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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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    Another horrible night filled with discomfort.

    I took my muscle relaxants, and usually they work. but... not tonight. and another 2 hours before I can go take a shower and run hot water over my neck.. I would do it now, but I don't wanna wake anyone up.. Maybe I'll get to sleep before than
    MeowOnMe MeowOnMe 18-21, F 4 Responses a week 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 3 Responses Aug 2

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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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    I can't remember if I took my medication

    or not tonight... Great. :(
    MeowOnMe MeowOnMe 18-21, F 1 Response Dec 16

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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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    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 3 Responses Nov 27

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    Related Experiences

    Does any one in the chat room have cervical dystonia . I have focal cervical dystonia .
    SusanU123 SusanU123 56-60, F Dec 13

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    I have Cervical Cancer to be exact. I found out on my mums birthday in June this year. I'd been having all the symptoms for about a year and a half but no one paid attention to...
    Lasey94 Lasey94 18-21, F 2 Responses Dec 9

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    Anterior cervical discectomy and fusion (ACDF) is a surgery to remove a herniated or degenerative disc in the neck area of the spine. The incision is made in the front of the spine...
    jack69506 jack69506 31-35, M 1 Response Nov 28

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    i'm getting nerveous thinking about test of cervical cancer again.it's thurdsay.i have no family who care me.hospital is the most lonliest place if you don't have family or close...
    juryandrews juryandrews 31-35, F 1 Response Dec 14

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    I have genital wart.. My innocent wife got infected it from me. I can't forgive myself for hurting my sweet angel. Now im worried about it might turn in to cervical cancer and...
    Undome Undome 26-30, M Dec 17

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    I have genital wart.. My innocent wife got infected it from me. I can't forgive myself for hurting my sweet angel. Now im worried about it might turn in to cervical cancer and...
    Undome Undome 26-30, M 1 Response Dec 17

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    In 2012, my mom was diagnosed with being in an advanced stage of cervical cancer. This woman, who was never sick, (I thought she was going to outlive me) was now terminally ill...
    miryam57 miryam57 56-60, F 1 Response 1 day ago

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    Hey i have no life I never graduated, never had a prom, never had some cute love story happen in my life, even though i have my true love... we never had a nice cute story though...
    beckybecks224 beckybecks224 16-17, F 19 hrs ago

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    Hahaha I am such a mushy friend but anyways this is a poem I came across that made me think of someone who I haven't known very long but this person is really special to me and I...
    sarahspanked43 sarahspanked43 16-17, F 19 hrs ago