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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

    The worse places to have an Cervical Dystonia

    episode - is anywhere that isn't your own home. I'm crashing at my boyfriends house tonight, and it's starting to act up, and I can't sleep. I can't even lay down. My boyfriend is sleeping already, so I can't ask him for help. I forgot my Cervical pillow at home, so getting...
    Scoodaloop Scoodaloop 18-21, F Mar 20

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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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    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...
    Scoodaloop Scoodaloop 18-21, F 4 Responses Nov 8, 2014

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    It's amazing how missing only a few days of

    physical therapy can totally **** you up...
    Scoodaloop Scoodaloop 18-21, F 1 Response a week ago

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    Another horrible, horrible night.

    I was fine until I went to lay in bed to go to sleep. I don't understand why laying down triggers my tremors. It makes no sense to me. It doesn't even make sense to my neurologist, or any of my physical therapists.. And I see 5 of them. The muscles should be most relaxed in a...
    Scoodaloop Scoodaloop 18-21, F 3 Responses Mar 23

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    After having over a week with no issues getting

    to sleep, tonight ruins it. I have a lot of discomfort, pain and can barely move... Tremors are not that bad, thank goodness. But still. I can't even lay down because of how I feel, and it will only get worse if I lay down right now. I'm exhausted, and really just want to sleep...
    Scoodaloop Scoodaloop 18-21, F Mar 7

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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...
    Scoodaloop Scoodaloop 18-21, F 1 Response Jan 8

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    Here I am, another sleepless night.

    It doesn't even matter about how tired I am. I'm exhausted, and all I want to do is sleep. and I can't. My condition won't allow it. The pain won't subside. The tightness won't go away. The aching and burning sensations linger. The tremors won't stop. It's nothing but a living...
    Scoodaloop Scoodaloop 18-21, F Feb 22

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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...
    Scoodaloop Scoodaloop 18-21, F Jan 9

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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...
    Scoodaloop Scoodaloop 18-21, F 1 Response Jan 27

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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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    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.
    Scoodaloop Scoodaloop 18-21, F 2 Responses Jan 10

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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...
    Scoodaloop Scoodaloop 18-21, F 2 Responses Jan 14

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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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    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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    It feels so lonely sometimes,

    not knowing anyone with the same condition that I have. I don't know anyone who can even remotely feel what I feel, or who can even slightly understand what I go through every day. not my friends, not my family and not my boyfriend. They often run out of things to say because...
    Scoodaloop Scoodaloop 18-21, F 2 Responses Feb 6

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    Every time a really bad day

    or night comes, I always ask myself... "will this misery ever end?" and then I have a few good days, with no pain, no tremors, no discomfort at all, and I think... "It's finally getting better." Then another bad night comes. a night like tonight. and then I realize... This...
    Scoodaloop Scoodaloop 18-21, F Mar 8

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    It's now 7am. I think it's safe to say

    that I'll not be getting any sleep any time soon. Especially since the pain is increasing instead of decreasing. I give up. Mine as well get up, take a long hot shower and drink about 5 cups of coffee. Okay, maybe just 3. But most likely just 2.
    Scoodaloop Scoodaloop 18-21, F 1 Response a week ago

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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...
    Scoodaloop Scoodaloop 18-21, F 3 Responses Jan 14

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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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    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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    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 2 Responses Aug 2, 2014

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    Scoodaloop Scoodaloop 18-21, F 1 Response Jan 31

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    I am finally getting my Botox injections today.

    I am over a month overdue... as much as I hate getting four needles injected into my neck muscles, it's worth it in the long run! I haven't seen my neurologist in over 3 months, so I made a list of things that I need to talk to him about. I've been going to physical therapy...
    Scoodaloop Scoodaloop 18-21, F 2 Responses Feb 10

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    I got my injections yesterday.

    It's already helping to a degree. I am currently up in discomfort though... It takes a few days to a week or so for full effect to take place... but anyway, I talked to the doctor about the tens unite and the neck brace - I am thankfully getting both. :) he said not to over use...
    Scoodaloop Scoodaloop 18-21, F 1 Response Feb 11

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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.
    Scoodaloop Scoodaloop 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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    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...
    Scoodaloop Scoodaloop 18-21, F 2 Responses Dec 8, 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...
    Scoodaloop Scoodaloop 18-21, F 1 Response Dec 8, 2014

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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...
    Scoodaloop Scoodaloop 18-21, F 1 Response Dec 30, 2014

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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...
    Scoodaloop Scoodaloop 18-21, F 3 Responses Dec 20, 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...
    Scoodaloop Scoodaloop 18-21, F Dec 9, 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...
    Scoodaloop Scoodaloop 18-21, F 2 Responses Jan 16

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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 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...
    Scoodaloop Scoodaloop 18-21, F 2 Responses Dec 30, 2014

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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...
    Scoodaloop Scoodaloop 18-21, F 6 Responses Dec 28, 2014

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

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    Another night, forced to stay awake against my

    will. I'm so tired, I just want to sleep. I don't remember the last time I had a good nights sleep. Too long ago to remember. My eyes are heavy. My stomach feels sick. My body is weak. and yet I have no choice but to stay awake and indulge further into my misery. Pain...
    Scoodaloop Scoodaloop 18-21, F 3 Responses Mar 10

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    Here I am again, exhausted,

    in need of sleep, meanwhile i'm forced to stay awake because of this bullshit again.
    Scoodaloop Scoodaloop 18-21, F Feb 5

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

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    How does it feel to be painless?

    I haven't had a completely pain free day in 8 years. Even with treatment. and it's sad to know that I may never be able to feel pain free, for the rest of my life.
    Scoodaloop Scoodaloop 18-21, F Mar 12

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    another night that leaves me here awake,

    at 2 in the morning... Sitting here with pain going from the top of my head to my back, a nagging headache, and barely being able to move. sleepy, and sleepless. Everything just feels so tight and uncomfortable...I tried everything I could to get the pain to stop. I give up. I'm...
    Scoodaloop Scoodaloop 18-21, F 1 Response Feb 28

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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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    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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    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 41-45, M 3 Responses Apr 22, 2014

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    I can't remember if I took my medication

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

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