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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. 82 People

    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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    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...
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Dec 8, 2014

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    6am now... 4 hours since my last post.

    .. Still awake. Still suffering with pain and tremors... I'm exhausted... I just want to sleep... That's all I want... But it gets so bad when I lay down, and I can't sleep sitting up... I don't know what to do... :'( Im so tired of feeling this way!!! You have no idea what this...
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Jan 14

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    So I have muscle relaxants

    that I'm taking 2-3 times a day, and usually they make me drowsy. But, never drowsy enough to make me actually want to sleep during the day. Until today. For some reason I was knocked out for like, an hour or so. I know an hour doesn't seem like much, but for someone who never...
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Jan 8

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Dec 2, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Dec 13, 2014

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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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    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
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Dec 19, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Dec 8, 2014

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    This condition has hindered my life

    so much since I got it 7 or 8 years ago. (Can't remember exactly). It's caused me to be unable to do many things. It caused me to be unable to participate in several things. It causes me to be unable to even do the most simplest of things. Like, certain chores to do around...
    BananaSmoothiee BananaSmoothiee 18-21, F Jan 14

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 5 Responses Nov 8, 2014

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    It really sucks when the general people around

    you don't know of your medical condition. Mine being, cervical dystonia. Cause things like the following happens... My mom went outside to shovel out her car because we had a snow storm last night. our neighbor comes out and asked my mom, "where's your daughter?" like, she was...
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response 17 hrs ago

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    I am running out of patience with this.

    Worse of all, I am running out of energy. The absolute worse night of my life. So much pain. So many tremors. I can't deal with this much longer. I cried for hours. It wouldn't stop. nothing and no one was able to help. I almost went to the hospital. Took me hours to fall...
    BananaSmoothiee BananaSmoothiee 18-21, F 6 Responses Dec 28, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Oct 18, 2014

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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, 2014

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    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Dec 13, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Nov 28, 2014

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    That moment when you're

    so happy that today is one of the days where you have physical therapy, and then you get a phone call saying that the physical therapist you had an appointment with is going to be out sick or whatever, and the only option is to go at a later time, and you can't. so you ask them...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Jan 16

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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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    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...
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Dec 20, 2014

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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, 2014

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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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    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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    Okay, so, I went to my first physical therapy

    session today! It felt good being there today, after not being there since June! So, I went in feeling horrible... Came it feeling great! During the session, it hurt bad... That's because of how tight my muscles are. the physical therapist who saw me today said that my...
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Dec 30, 2014

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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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    I just got off the phone with my physical

    therapy office... I started crying to the girl on the phone (she's known me for years) because of how bad it is, and I asked her if she can get me in today as an emergency. Luckily, I have an appointment at 5:30. Lets hope I can last 8 more hours. They will call if they can get...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Dec 30, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Dec 22, 2014

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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, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Dec 8, 2014

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    I can't remember if I took my medication

    or not tonight... Great. :(
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Dec 16, 2014

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    Anyone else here get headaches

    that lasts for days, weeks???
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response May 4, 2014

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    What a horrible horrible night this has turned

    out to be... It's bad enough I was having an anxiety attack, but now my cervical dystonia has been acting up. For over an hour there has been non stop, painful tremors. I can't stop them. I can't relieve the pain. I can't sleep. It's making my anxiety worse. I have gone 3 whole...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Jan 14

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Dec 17, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Nov 22, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 3 Responses Nov 27, 2014

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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...
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Dec 9, 2014

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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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    Those horrible muscle spasms you get on the

    top/sides of your head, where it feels like a vein is gonna burst... Haven't felt one of those in a long time, but the spasms like that have been allll day.
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Jan 10

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    Another sleepless night.

    .. 4AM, and I'm exhausted. I can't sleep because these tremors won't stop...I can't lay down....all I want, so badly, is to sleep...even if it's for a short time...
    BananaSmoothiee BananaSmoothiee 18-21, F Jan 9

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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, 2014

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    It feels worse when I lay down,

    but when I sit up, it feels better... Why is that?
    BananaSmoothiee BananaSmoothiee 18-21, F 1 Response Nov 28, 2014

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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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    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.
    BananaSmoothiee BananaSmoothiee 18-21, F 2 Responses Nov 24, 2014

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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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