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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

    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...
    PsychGirl94 PsychGirl94 18-21, F 4 Responses Nov 8, 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...
    PsychGirl94 PsychGirl94 18-21, F 6 Responses Dec 28, 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...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Jan 27

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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
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Dec 19, 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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    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...
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Feb 10

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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.
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Nov 24, 2014

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    Another sleepless night.

    .. Sometimes I wonder if the pain will ever truly stop.
    PsychGirl94 PsychGirl94 18-21, F 1 Response Apr 10

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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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    It's amazing how missing only a few days of

    physical therapy can totally **** you up...
    PsychGirl94 PsychGirl94 18-21, F Mar 24

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    I can't remember if I took my medication

    or not tonight... Great. :(
    PsychGirl94 PsychGirl94 18-21, F 1 Response Dec 16, 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...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Mar 10

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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...
    PsychGirl94 PsychGirl94 18-21, F Feb 22

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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...
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Jan 16

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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.
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Jan 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.
    PsychGirl94 PsychGirl94 18-21, F Feb 5

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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...
    PsychGirl94 PsychGirl94 18-21, F Mar 7

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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...
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Dec 30, 2014

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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...
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Feb 6

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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...
    PsychGirl94 PsychGirl94 18-21, F Jan 9

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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...
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Dec 8, 2014

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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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    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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    PsychGirl94 PsychGirl94 18-21, F 1 Response Jan 31

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    Man, going over a week with no physical therapy

    can really **** me up. I'm usually so good at keeping up with appointments.. Monday needs to come fast. :( I haven't had a good nights sleep in 3 nights.
    PsychGirl94 PsychGirl94 18-21, F Apr 11

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    Talked to another one of my physical therapist.

    I do have a bad TMJ problem, and it's causing extra strain on my muscles, causing them to be tighter and spasm more... It hurts a lot when they work on that spot, that's how I know it's so bad. So, I need to get to the dentist and get one of those night guard things. I just...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses May 14

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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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    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...
    PsychGirl94 PsychGirl94 18-21, F 2 Responses Jan 14

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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...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Dec 22, 2014

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    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...
    PsychGirl94 PsychGirl94 18-21, F Mar 20

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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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    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...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Dec 30, 2014

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    Out of all the side effects

    that come from CD - Headaches are one of the worst ones... I had a headache last night right before I fell asleep. I woke up this morning with the same exact headache. Pain killers aren't working yet, and not even a long hot shower helped. Headaches like this makes me wanna...
    PsychGirl94 PsychGirl94 18-21, F Apr 7

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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...
    PsychGirl94 PsychGirl94 18-21, F Jan 14

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    whelp, I haven't had a night like this in about

    a week or so.. 3AM and i'm still awake because of the pain, the tremors, and not being able to lay down in bed because of how uncomfortable my neck feels when I do. I'm tired and I need to get up early. I feel like I might go all night with no sleep again. Or at least a few more...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Apr 28

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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 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...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Mar 23

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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...
    PsychGirl94 PsychGirl94 18-21, F Feb 28

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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.
    PsychGirl94 PsychGirl94 18-21, F Mar 12

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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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    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...
    PsychGirl94 PsychGirl94 18-21, F 3 Responses Jan 14

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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...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Feb 11

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    So, it turns out that I have a TMJ problem.

    The reason I bring this up in this group, is because of me grinding my teeth at night, it's actually causing certain muscles in my neck to really tighten up and stiffen. It's painful. It also can be what's causing most of my tremors. Also, I've been having breathing issues a...
    PsychGirl94 PsychGirl94 18-21, F 1 Response Apr 28

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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...
    PsychGirl94 PsychGirl94 18-21, F Jan 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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    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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