andrea
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Post by andrea on Feb 27, 2017 14:11:45 GMT -5
Has anyone here had, or know anyone who has had, cervical dystonia?
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Post by wallycat on Feb 27, 2017 17:05:45 GMT -5
I worked with a guy who was married to an alcoholic. She would get this after 4 drinks (or more).
Not sure that it is related in most people who suffer from it, but this was the only case I ever saw or knew someone who had it.
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andrea
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Post by andrea on Feb 27, 2017 21:26:54 GMT -5
In my case it appears to be permanent.  It is so incredibly scary and frustrating to have a condition that no one has ever heard of, and there is absolutely nowhere to go for help or support. My doctor doesn't seem at all concerned that I have been in absolutely horrific pain, and that my head is completely stuck tilted to the right. He won't even prescribe any pain medication. Seriously? I am just so bitter and upset about why this happened. Often, it is associated with psychiatric meds, but I have never taken even a single dose of any of those. I am adamantly against taking drugs, and I don't even like to take Tylenol unless absolutely desperate. I wouldn't wish this torture upon my worst enemy. |
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Post by wallycat on Feb 28, 2017 11:01:11 GMT -5
Can you find another doctor? That is ridiculous. It is a very painful condition. I don't know what area you live in, but there have to be docs that are more versed on this. Has he discussed possible botox treatment? www.ncbi.nlm.nih.gov/pubmed/28223858www.ncbi.nlm.nih.gov/pubmed/28138245or you can start with osteopathic manipulation to see if you can get some relief: www.ncbi.nlm.nih.gov/pubmed/28119789Be mindful on the acetamenophine (tylenol) dosage because it can be highly toxic to the liver over time/dosage. Did you have a head MRI? any head trauma ever? If I find any newer treatments on line, I'll post back here. Get a second opinion!! Hope you can find someone more compassionate. Editing to add....any recent surgery? I found this and interestingly benadryl helped: www.ncbi.nlm.nih.gov/pubmed/28057843 |
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cafelatte
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Post by cafelatte on Feb 28, 2017 11:07:13 GMT -5
Can you find another doctor? That is ridiculous. It is a very painful condition. I don't know what area you live in, but there have to be docs that are more versed on this. . This is what I was going to post. I had to look up what this is, as I have never heard of it. I'm sorry you are dealing with something that is serious, IMHO. I would definitely go to a Dr that would specialize in it, even if it means travelling to another city. How long have you been dealing with this? Good luck and hope you find some relief. Keep us posted. |
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Post by wallycat on Feb 28, 2017 11:09:16 GMT -5
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andrea
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Post by andrea on Feb 28, 2017 11:59:06 GMT -5
Thanks for the feedback. I really appreciate it! I started having some symptoms in October 2015, but my son was extremely sick with kidney disease, so I just assumed it was stress. In July 2016, I suddenly developed an extreme worsening of symptoms in one day. Tremoring, head jerking and pulling etc. Did online research, and was sure I had cervical dystonia. Went to 3 different neurologists, and all just said it was stress, not dystonia, and they insisted I just needed antidepressants etc. I finally went to a movement disorder neurologist in Chicago, and they immediately diagnosed me with cervical dystonia. They are supposedly a "premier" hospital for treating this condition, but everyone just seems so cold and lacking empathy.
I had one treatment of Botox on 1/25, and it did help with the tremor and backwards head jerking, but 5 days after the injection I developed EXTREMELY severe pain in my right shoulder, and extreme head pulling to that shoulder. I have sent multiple messages, but they just don't seem to care and won't even prescribe pain medication. Doctor says it is "out of the scope of his practice". What?? I have another injection tomorrow. I don't know what I'll do if this one doesn't help.
I have had several MRIs - neck x2, brain, shoulder etc. Nothing really showed up, but dystonia doesn't show up on MRIs. I had my thyroid removed in 2003, and I'm thinking that was probably what caused this. Looking back, I have had some episodes of tremoring in the past, but they always went away. I also did have a head injury in July 2015 though, so who knows.
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cafelatte
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Post by cafelatte on Feb 28, 2017 13:10:40 GMT -5
You sure have been through a lot. Maybe there is another Dr. at the hospital who would be better for you? I would definitely consider that after this next injection. Hopefully it will help you more this time.
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Post by wallycat on Feb 28, 2017 13:29:36 GMT -5
((((((((((Andrea))))))))))))
nothing worse than feeling unwell and having doctors without compassion. I hope the dystonia site can suggest different doctors from the ones you have already seen.
My heart goes out to you.
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Post by swedishcook on Feb 28, 2017 13:59:22 GMT -5
I'm so sorry Andrea. Keep looking for another doctor!
Those without compassion should not be treating humans.
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andrea
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Post by andrea on Feb 28, 2017 20:46:36 GMT -5
Thanks again, everyone. I already switched doctors once at this place since the first one was so rude and condescending. Going to have to switch again though. Hopefully, the new one I have in mind will be better.
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Post by Catbatty on Feb 28, 2017 21:35:24 GMT -5
Andrea, what a nightmare! I think I can speak for all of us - we are here to support you and be here for you in any way that we can. I see that several people have responded already and I know you are in their hearts and thoughts, as well as will be any people who read this thread. Please tell us if there is anything we can do and don't hesitate to come here when you want to 'talk' or vent or be with people who care about you. This struggle you are going through is too much to bear alone. Even IF those doctors you are seeing have few answers, the least they can do is be caring AND find answers for you--never give up on you (and stay in touch with you)!! Please demand, you have that right.
Big hugs.
Catbatty
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andrea
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Post by andrea on Feb 28, 2017 22:08:00 GMT -5
Thank you so much, Catbatty. It is great to have such a supportive place to come for help. I have sure missed this board. Unfortunately, cooking is probably the one thing that causes the most pain, so I haven't been able to cook at all. Cooking is my life, so I sure hope I'll be able to get back to it again soon and be able to post about recipes instead of diseases. Sixteen hours until my next treatment. I soooo hope it gives me some relief! Thanks again. |
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cafelatte
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Post by cafelatte on Mar 1, 2017 14:46:48 GMT -5
How did the injection go? Or is it too early to tell? I wouldn't hesitate to keep changing Dr's until you find one that you feel comfortable with. Hopefully you will get some relief to be to enjoy cooking and other activities again.
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Post by emptynestmom on Mar 1, 2017 15:26:00 GMT -5
I hope that the treatment helps...and that the new doctor you planned to switch to is a good responsive one! Positive thoughts/prayers being sent your way... |
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andrea
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Post by andrea on Mar 1, 2017 18:32:16 GMT -5
Had the injections today. It hurt so much this time. On one of the injections I literally jumped out of the chair! I think he hit my esophagus with the needle. Definitely did not feel right. I think he got a good dose in the muscle that was bothering me the most though. Going to schedule next appointment with a different doctor. Meanwhile, I now wait again. Can take days to weeks to take effect. |
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Post by Catbatty on Mar 1, 2017 19:29:42 GMT -5
We will wait with you. Sorry you had to go through that. |
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cafelatte
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Post by cafelatte on Mar 2, 2017 15:18:41 GMT -5
Ouch. I do hope this one helps! Thanks for the update. |
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andrea
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Post by andrea on Mar 2, 2017 16:10:49 GMT -5
Thanks again for your support. It really helps!
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Post by Catbatty on Mar 2, 2017 17:45:58 GMT -5
Andrea,
You can't work because of this condition and you mentioned you can't cook. Do you care to tell us any more? What life must be like for you right now...plus the pain you are in! I feel so bad for you. How do you manage to get through the days? Is someone cooking for you? Are you mostly reclining or in bed? Do you have friends and relatives helping you? Is it painful to use the computer? Is there anything we can talk about that would brighten you days just a bit? If typing is a pain, don't bother...but if you would like to share more, please do.
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Post by wallycat on Mar 2, 2017 18:25:11 GMT -5
(((((((((Andrea))))))))))
I'm hopeful this round of shots gives you some relief, at least until you find a doctor that can be a better partner for this.
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andrea
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Post by andrea on Mar 2, 2017 21:55:46 GMT -5
Andrea, You can't work because of this condition and you mentioned you can't cook. Do you care to tell us any more? What life must be like for you right now...plus the pain you are in! I feel so bad for you. How do you manage to get through the days? Is someone cooking for you? Are you mostly reclining or in bed? Do you have friends and relatives helping you? Is it painful to use the computer? Is there anything we can talk about that would brighten you days just a bit? If typing is a pain, don't bother...but if you would like to share more, please do. My current life is really dreadful. I really can't do anything. I can type on my cell phone while lying down, so at least I can communicate that way. Initially I was lying on my back a lot on the sofa which was actually very comfortable. However, that ended up causing a horrible herniated disc which I am still battling. Between that on the left side, and dystonia on the right side, I can't get comfortable anymore. I am hoping this latest round of Botox will kick in soon so I can regain some mobility. It gets very depressing being home alone all day while my husband and kids are at work/school, and then not being able to do anything. Fortunately, my kids and husband have been very good about cooking and other stuff needing to be done. I have always been super active - working full-time at a crazy busy job, going to the gym every day, cooking tons of stuff, so this has been really difficult to adjust to. I just have to keep hoping the symptoms will improve at some point. I found a Facebook page of people with this condition which has been helpful. No one I know in real life has ever heard of this. |
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andrea
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Post by andrea on Mar 2, 2017 21:58:42 GMT -5
(((((((((Andrea)))))))))) I'm hopeful this round of shots gives you some relief, at least until you find a doctor that can be a better partner for this. I made an appointment at the University of Chicago for 3/24 to see what they recommend. |
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Post by Catbatty on Mar 2, 2017 22:59:19 GMT -5
Andrea, Going to the gym everyday? I wonder if that has something to do with this--as in some strain or pull on something vital. Have you tried back manipulations like with a chiropractor? Massages? They might, at least, help a bit. (I'm guessing you've already gone there...) I haven't had problems in several years, but used to get 'stuck' -- and it was very, very painful...my head or back. My head could not turn. I remember going to work (at Intel) completely bent over for a few days because I couldn't straighten up. But all of these things would last only days. I still have minor problems with neck and back and hips, but nothing as bad as those things...and nothing close to what you are living with. It's good to hear that you have found a Facebook group with folks going through it too. That's got to be such comfort! |
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andrea
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Post by andrea on Mar 3, 2017 7:51:18 GMT -5
Andrea, Going to the gym everyday? I wonder if that has something to do with this--as in some strain or pull on something vital. Have you tried back manipulations like with a chiropractor? Massages? They might, at least, help a bit. (I'm guessing you've already gone there...) I haven't had problems in several years, but used to get 'stuck' -- and it was very, very painful...my head or back. My head could not turn. I remember going to work (at Intel) completely bent over for a few days because I couldn't straighten up. But all of these things would last only days. I still have minor problems with neck and back and hips, but nothing as bad as those things...and nothing close to what you are living with. It's good to hear that you have found a Facebook group with folks going through it too. That's got to be such comfort! Yeah, I initially hoped it was a gym injury or from pulling too many weeds in the yard, but no such luck. I am going to be starting massage and physical therapy, so hopefully those will help too. |
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Post by gobluem82 on Mar 3, 2017 13:46:02 GMT -5
Andrea,
I don't have any advice, but just wanted to say how sorry I am that you're going through all of this. I can't even begin to imagine what the physical pain must be like compounded by the frustration of dealing with your doctors. Hoping you get some relief on both fronts soon.
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andrea
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Post by andrea on Mar 3, 2017 15:24:43 GMT -5
Andrea, I don't have any advice, but just wanted to say how sorry I am that you're going through all of this. I can't even begin to imagine what the physical pain must be like compounded by the frustration of dealing with your doctors. Hoping you get some relief on both fronts soon. Thank you very much. I appreciate your support. |
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andrea
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Post by andrea on Mar 4, 2017 0:35:27 GMT -5
Omg.. all of a sudden tonight I felt a big improvement. Doctor said it could take up to 4 weeks to work, but it has only been 2 days, and I can actually hold my head straight tonight. I even cooked something! Just cornbread to go with chili my husband made, but I'll take it. I really hope this lasts and isn't just a fluke.
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Post by Catbatty on Mar 4, 2017 2:50:47 GMT -5
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Post by swedishcook on Mar 5, 2017 22:16:55 GMT -5
All my fingers are crossed. Sending you as many good thoughts as I can.
Great to hear you have physical therapy and massage prescribed. Hope your therapist has lots of compassion.
Big hugs Andrea!!!
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It is so incredibly scary and frustrating to have a condition that no one has ever heard of, and there is absolutely nowhere to go for help or support. My doctor doesn't seem at all concerned that I have been in absolutely horrific pain, and that my head is completely stuck tilted to the right. He won't even prescribe any pain medication. Seriously? I am just so bitter and upset about why this happened. Often, it is associated with psychiatric meds, but I have never taken even a single dose of any of those. I am adamantly against taking drugs, and I don't even like to take Tylenol unless absolutely desperate. I wouldn't wish this torture upon my worst enemy. 
