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. 89 People

    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
    22-25, F
    2 Responses Nov 24, 2014

    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

    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
    22-25, F
    Mar 20, 2015

    What caused everyones dystonia?

    my experience is from a gym injury from too heavy weight on my upper back and putting pressure on my neck irritating the nerves and causing muscles to spasm to protect the area. all due to hiring the worst personal trainer out there. its been hell since jan 2015 when my symptoms...
    fantrueblood fantrueblood
    41-45, F
    2 Responses Dec 7, 2015

    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
    22-25, F
    Mar 12, 2015

    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
    22-25, F
    1 Response Dec 22, 2014

    I can't remember if I took my medication

    or not tonight... Great. :(
    PsychGirl94 PsychGirl94
    22-25, F
    1 Response Dec 16, 2014

    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
    22-25, F
    1 Response Mar 10, 2015

    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
    22-25, F
    3 Responses Nov 8, 2014

    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
    22-25, F
    Jan 8, 2015

    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
    22-25, F
    2 Responses Dec 8, 2014

    Most of the time when I sleep out,

    I either always forget my cervical pillow or my blue pillow that I use under it... Which then leaves me to either be in pain the whole night with very little sleep - or I get to sleep, but I wake up all ****** up. It's one of the things I hate most about this condition... It...
    PsychGirl94 PsychGirl94
    22-25, F
    Apr 9, 2015

    It's amazing how missing only a few days of

    physical therapy can totally **** you up...
    PsychGirl94 PsychGirl94
    22-25, F
    Mar 24, 2015

    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...
    PsychGirl94 PsychGirl94
    22-25, F
    Dec 9, 2014

    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
    22-25, F
    2 Responses Jan 14, 2015

    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
    22-25, F
    Feb 28, 2015

    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
    22-25, F
    2 Responses Jan 10, 2015

    Another sleepless night.

    .. Sometimes I wonder if the pain will ever truly stop.
    PsychGirl94 PsychGirl94
    22-25, F
    Apr 10, 2015

    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
    22-25, F
    Apr 11, 2015

    Here I am again, writing another post on

    another sleepless night. Sitting up, staring out of my window, listening to the soothing sound of crickets to try and calm my anxiety, maybe distract me from this pain and discomfort that I'm enduring. Sitting up because I can't lay down, it's already bad enough, laying down...
    PsychGirl94 PsychGirl94
    22-25, F
    3 Responses Sep 7, 2015

    The past two nights have been horrible.

    .. It hasn't been this bad in a while. Every symptom is just so much worse. I'm just laying here, waiting for it to pass so I can sleep... I don't see it happening for a while.. But it'll be back tomorrow anyway. Hopefully not as bad as today, but it'll still be back. In...
    PsychGirl94 PsychGirl94
    22-25, F
    1 Response Mar 31

    I'd like one night where I wasn't stuck with

    pain and suffering... Is that too much to ask for? :(
    PsychGirl94 PsychGirl94
    22-25, F
    Feb 20

    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
    22-25, F
    1 Response Dec 30, 2014

    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
    22-25, F
    2 Responses Dec 19, 2014

    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...
    PsychGirl94 PsychGirl94
    22-25, F
    Dec 8, 2014

    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
    22-25, F
    Mar 7, 2015

    After many many months of being without

    treatment, after finding out my really good neurologist has retired, after having to change insurance companies, after having to find a new neurologist, and after so much pain and suffering due to being without my treatment for so long... I finally had my first appointment with...
    PsychGirl94 PsychGirl94
    22-25, F
    2 Responses Mar 9

    Another night full of pain

    and suffering. All I want is sleep. :(
    PsychGirl94 PsychGirl94
    22-25, F
    1 Response Jan 24

    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
    22-25, F
    2 Responses Mar 23, 2015

    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
    22-25, F
    Feb 22, 2015

    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
    22-25, F
    1 Response Feb 11, 2015

    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
    22-25, F
    6 Responses Dec 28, 2014

    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

    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

    Another sleepless night filled with nothing

    but pain and discomfort... 7:am. I don't see myself getting any sleep any time soon.
    PsychGirl94 PsychGirl94
    22-25, F
    4 Responses Dec 20, 2015

    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.
    PsychGirl94 PsychGirl94
    22-25, F
    Mar 24, 2015

    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
    22-25, F
    Apr 7, 2015

    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
    22-25, F
    1 Response Apr 28, 2015

    I should be asleep by now,

    but I'm not. I forgot how it feels to never be in pain, in discomfort. I forgot how it feels to be able to lay in bed and sleep without being kept awake due to tremors and muscle spasms. I forgot how it feels to be normal.
    PsychGirl94 PsychGirl94
    22-25, F
    2 Responses Jan 17

    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
    22-25, F
    1 Response Dec 30, 2014

    4:30AM. Another sleepless night.

    While most others I know are comfortably laying in their beds, cuddled up with their blankets and pillows, dreaming away, I'm sitting up in exhaustion with nothing but pain, tremors, and total discomfort. I don't even have the lovely ability to lay down while I suffer, because...
    PsychGirl94 PsychGirl94
    22-25, F
    6 Responses Nov 9, 2015

    Another night of pain

    and suffering. Will it ever end? The answer is: NO.
    PsychGirl94 PsychGirl94
    22-25, F
    1 Response Nov 14, 2015

    Another horrible night,

    with a random attack... painful, tremors, holding me from sleep, and the comfort of my bed. I was pretty much fine all day, and then when I actually want to relax and sleep, it decides to **** with me. when will it ever end ?
    PsychGirl94 PsychGirl94
    22-25, F
    1 Response Jun 7, 2015

    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
    22-25, F
    2 Responses Feb 10, 2015

    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...
    PsychGirl94 PsychGirl94
    22-25, F
    Mar 8, 2015

    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
    22-25, F
    1 Response Jan 27, 2015

    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
    22-25, F
    Apr 28, 2015

    It really sucks. The past two nights have been

    horrible. I've been okay for the most part for a few weeks, but then all of the sudden it decided to act up again. :'( Not being able to sleep, having to take showers at 1AM just to ease the pain. Can't lay down right away - because that's a trigger. I have physical therapy...
    PsychGirl94 PsychGirl94
    22-25, F
    3 Responses May 26, 2015
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